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How I Advocated for Myself When I Was Diagnosed with MS—And How It Changed My Life

Well, I ended up saying no to medication. The potential horrendous side effects (that I found online) paled in comparison to how “normal” and healthy I felt. However, what I did say yes to was doing my own research.

How I Treated My MS Symptoms With Nutrition

A simple Google search of, “MS and vegan” showed me the Swank Diet, a 50-year study on the effects of saturated fat and MS. Why hadn’t my doctor mentioned it? I would later find out it’s because he (and many other neurologists) doesn’t believe nutrition plays that big of a role in altering your disease path.

I had some pretty significant changes that first year post diagnosis. I developed Optic Neuritis after a particularly stressful day at work. I also had hand/feet tingling related to the heat. But I also completely changed my diet and lifestyle to a vegan/Swank diet. I trusted that my diet changes would affect me far more positively than medication ever could.

I got a set of follow-up MRIs almost a year after my diagnosis, and all of my lesions were gone. Food was in fact my cure, and I effectively halted my disease without putting any harmful medications into my body, potentially triggering new health issues. I healed myself essentially without the help of my doctor.

Now, I’m not saying all doctors’ advice is bad, and that all of them don’t have your best interests in mind, but Western medicine can be pretty funky, and sometimes a holistic approach is your very best bet. At the very least, it is an excellent supplementation to your treatment plan. The environment in which doctors are having discussions on holistic methods is changing, and it is slowly getting better, but there are many, many times where it can only help to be your biggest advocate and do your own research.

How to Advocate For Yourself In a Doctor’s Office

1. Take notes during your appointments.

No one will look at you weirdly for bringing a notebook and pen to an important appointment regarding your most precious possession: your health. If possible, take a family member or friend with you to do the task. You can review the notes later, when you are clearer headed, and less anxiety-ridden about being at your appointment.

2. Ask questions!

If your doctor is mentioning something without an explanation, speak up and ask for clarification. They’re there to educate as well, and if something does not make sense to you, they should be more than happy to explain it to you.

3. Know that it’s okay to say no.

If you aren’t comfortable agreeing to a treatment plan without thinking it over, then speak up. Sometimes you need some time to reflect in order to make the right decision.

4. Find online groups (Facebook in particular) for your disease or health issue.

This gives you the chance to discuss it with others in similar shoes. There will be those people who are newly diagnosed, those “veterans” who can tell you what their journey has been like, those on medications, and those who aren’t. The amount of knowledge and support you can receive when you find the right groups is immeasurable, not to mention that these groups will make you feel less alone in fighting for your health.

5. Do your research.

Google can be a scary place, so I definitely recommend only reading articles based on true scientific studies and evidence (not Yahoo question boards). Review your notes from your appointment and search for terms to get a better understanding of the things you talked about and the things your provider is suggesting you do. Create a list of follow-up questions for your next appointment.

I promise you, no one will care more about your health than you, so find your voice. Knowledge is power, so find your strength.

Interested in reading more about how food can be more than fuel? See how this woman used food to manage her endometriosis.

Lymphoma is a group of blood cell tumors that begin in cells of the body’s immune system. In the United States, about 79,990* new cases of lymphoma are diagnosed every year. In lymphoma, cancer cells are found in the lymphatic system, which is comprised of the bone marrow, lymph nodes, spleen, stomach, intestines and skin. Because lymph tissues are present in many parts of the body, lymphoma can start almost anywhere.

Normal lymph nodes are tiny, beanlike structures that trap cells containing poisons and waste materials. They also serve as a reservoir of cells that supply microorganism-fighting antibodies. Tubelike vessels carrying milk-colored fluid called lymph connect lymph nodes to each other. Lymph allows white blood cells (lymphocytes) to circulate. When white blood cells multiply abnormally, they cause masses to form and lymph nodes become enlarged. Some lymphomas may affect the bone marrow and interfere with its making of blood cells. The result is anemia, or low red blood cell count.

*American Cancer Society, Cancer Facts & Figures 2014

Classification of Lymphomas

Lymphomas are graded as low, intermediate and high depending on the kind of lymphoma cells present and how they affect lymph nodes and chromosomes. Some lymphomas grow faster and require specific treatment. Classifying them is complex because many kinds of lymphocyte cells can be involved.

Low-Grade Lymphoma

These grow so slowly that patients can live for many years mostly without symptoms, although some may experience pain from an enlarged lymph gland. After five to 10 years, low-grade disorders begin to progress rapidly to become aggressive or high-grade and produce more severe symptoms.

Intermediate-Grade Lymphoma

This type progresses fairly rapidly without treatment. With treatment, remission can be induced in between 50 to 75 percent of cases. Initial treatment has been so successful that people who stay in remission for three years after diagnosis are often considered cured. Stage I disorders are treated with radiotherapy.

High-Grade Lymphoma

Without treatment, these can progress rapidly regardless of stage. They are treated aggressively. With treatment, between 50 to 75 percent of patients enter remission. Those who stay in remission one year can look forward to a life free from recurrence. Treatment consists of intensive combination chemotherapy, which is sometimes supplemented with radiation therapy. Drug regimens used are determined by a number of factors, the most important being tissue study.

Types of Lymphomas

Based on the course of disease and the kind of lymphocytes affected, lymphomas are divided into two types: Hodgkin disease and non-Hodgkin lymphoma.

Hodgkin Disease

About 75 percent of those diagnosed with Hodgkin disease recover fully. About 90 percent of all people diagnosed with early-stage illness and more than 50 percent of those with more advanced stage are now living longer than 10 years with no signs of the disease coming back. The stage of the disease at diagnosis is critical in planning treatments. Sometimes giving the patient aggressive chemotherapy and then introducing young cells from the bone marrow (bone marrow transplantation) may increase chances of the patient living longer. A bone marrow transplant should be considered for every patient whose disease comes back after undergoing chemotherapy.

Non-Hodgkin Lymphoma

In the past 10 years, this disease has become easier to treat as more procedures are found to be effective. Overall, 50 to 60 percent of patients with non-Hodgkin lymphoma now live five years or longer without a recurrence. While a number of factors determine the best treatment for these disorders, the most significant is tissue classification followed by determination of the disease’s stage.

In my case, my story will begin with how my cancer was NOT diagnosed. I was never one to go to doctors for little things, but in the fall of 1996, I began running a low grade fever, complete loss of appetite, general malaise and pelvic pain that persisted for seven months.

I went to my internist, who despite running a wide range of tests, wasunable to identify the reason, all tests were coming back relatively normal with only slight elevations in WBC and a few others. I had numerous colonoscopies and gastric tests, all coming back normal. My internist early on seemed to have decided that what ever was going on was psychological…yes, I was anxious and depressed, but, when one cant eat, has pain, feels sick and is being put thru test after test with long delays between each one, I don’t think this is out of the ordinary.

After a few months, this internist was going on sabbatical and she essentially fired me as a patient, saying “Your fine, I see no reason for you not to try to get pregnant, and I think its best if you don’t see another doctor in this practice while Im gone.” I responded angrily, “I am not fine and I really don’t think getting pregnant would be the best idea when I can barely eat and have pelvic pain.”
The GI doing all the procedures and tests never seemed to doubt me, and said things like– “They told us in medical school, you NEVER want to be a difficult-to-diagnose-patient,” “Something is definitely wrong, probably something autoimmune that is taking a while to show it self clearly.” In an attempt to alleviate the pain based on a hypothesis that something autoimmune was going on, he put me on a short course of steroids.
I’d lost a total of 35 pounds, looked like a concentration camp victim. Although my doctors couldn’t diagnose me, the mailman at my office was spreading rumors that I had cancer because of the massive weight loss.
I went to another internist, but the chart implying that I was nuts followed. This internist pulled me off the steroids as I was running a fever around 100 degrees. More tests including exploratory surgery. However, a day or two after the steroids were stopped, my pain stopped and gradually my appetite returned. (note: the steroids I was on are
included in lymphoma treatments–that’s why the symptoms stopped)
All throughout this entire episode, a groin node, where the leg meets the body was slightly enlarged- a little over 2 cm. The internists were aware of this but said it was nothing. It seemed to be growing and several months after the pain had stopped and my appetite had returned, I asked the internist to biopsy it. He insisted it was nothing and I had the feeling he thought I was nuts. I persisted and got the biopsy. It came back benign. I felt absolutely fine for two years.
In terms of public opinion, every last doc I saw thru this ordeal was on the published lists of “best docs” in the city. Do I take these lists seriously anymore– NO.
Then a 4cm node popped up on the other leg. This time the Drs were worried, did the biopsy pretty fast. First impression was lymphocyte predominant Hodgkins. The pathologist had compared it with the earlier tissue and told me that an error had been made– both biopsies looked the same. He was not 100% sure of his diagnosis and sent it to other
experts to review– came back as an aggressive NHL lymphoma difficult to classify or grade, either an unusual marginal zone or unusual bcl-2 cd10 neg follicular that looks like its been caught in the act of converting from indolent to aggressive lymphoma.

The third group of docs at the NCI cancer ctr where I was treated decided it was a follicular grade 3 lymphoma with diffuse areas. No other tumors were seen on CT or PET. I was put at stage 2 because the tumor that had been misdiagnosed was on the other leg. From what I heard from one of the docs, the tumor board was pretty outraged at the earlier
misdiagnosis- the cancer had been obvious- the one doc was annoyed as he felt they charted it so as to protect the first pathologist rather than put was actually said in the meeting about how blatant the error was.
The mailman was right, the doctors were wrong. I was not totally crazy, I had cancer. Although I was VERY angry and scared about what the misdiagnosis would mean in terms of my eventual outcome I did not sue for malpractice.
I had 3 rounds of CHOP, pelvic radiation and then rituxan. I had been trying to convince my doc to give me R-CHOP as Id read about it, and he initially refused saying it wasnt proven. Then he and my rad onc went to ASH 99 saw the abstracts and my rad onc suggested I should also have rituxan– I told him, he needed to talk to my onc about it, as Id already asked. After they discussed it, my onc agreed to give me a course of 4 rituxan after the radiation.
So far, its been close to 6 years, and, thankfully, I have stayed in remission.
My advice from my experience– ALWAYS GET SECOND OPINIONS ON BIOPSIES. Dont stay with doctors who get frustrated because they cant make a diagnosis and then treat you like a hypochondriac when your body is telling you something big time is wrong, youve lost 35 pounds, have pain and are running a low grade fever!!!

10 cancer symptoms men shouldn’t ignore

Nagging back pain. Indigestion. Frequent urination. You may assume these are minor health issues that don’t need a doctor visit. But think again.

Cancer symptoms are often vague. In fact, prostate cancer–the most common cancer in men–has some of the least obvious symptoms.

“Men shouldn’t ignore their health,” says Therese Bevers, M.D., medical director of MD Anderson’s Cancer Prevention Center. “It’s vital to stay informed, pay attention to changes in your body and report unusual symptoms to your doctor right away.”

Knowing what symptoms to look for can help your doctor find cancer early when it’s most treatable.

Bevers shares some of the most common cancer symptoms in men.

  1. Abnormal lump. Have you recently felt a mass or lump right below your skin? This may be a sign of cancer. Lumps normally show up in the breast, testicles, lymph nodes and soft tissues, like tendons and ligaments. Here’s what to do: Report it to your doctor immediately, especially if you just found it, or it has grown in size.
  2. Changes in your testicles. Have you noticed changes in the size of your testicles, like one or both have gotten bigger? Maybe you’ve found a lump, or your testicles feel swollen or extra heavy. Any of these signs should send you straight to your doctor. Testicular cancer is most common in young and middle-aged men.
  3. Changes in your restroom habits. Suddenly need to use the restroom all the time? Or have pain when you go? This may be a sign of bladder or prostate cancer. Other signs to look out for are blood in your urine or stool. Changes in your bowel habits, like constipation or diarrhea that won’t go away, matter too.
  4. Changes in your skin. If you work long hours outside or have a history of blistering sun burns, check your skin more closely. What you think are signs of hard work might actually be skin cancer. Look for unusual bleeding, scaling or sores that do not heal. Other signs include warts as well as moles and freckles that change in color, size or shape. Bottom line: If you’ve got a strange spot on your skin, call your dermatologist.
  5. Indigestion or trouble swallowing. A prolonged painful burning sensation in your throat or chest shouldn’t be ignored – even if you suspect it’s from eating spicy food. Don’t think that regular indigestion or trouble swallowing is a normal part of aging either. It can be a sign of esophageal, stomach or throat cancer.
  6. Persistent cough or hoarseness. Do you have a nagging cough? If it lasts more than three weeks, it’s a sign that something’s wrong. And whether you smoke or not, a cough that doesn’t go away can be a sign of lung cancer. Persistent hoarseness, wheezing, shortness of breath or coughing up blood are also signs to call your doctor right away.
  7. Changes in your mouth. If you smoke, chew, dip or spit tobacco, you need to pay close attention to changes inside your mouth. White patches inside your mouth or white patches on your tongue may be pre-cancers. Left untreated, these areas can turn into oral cancer. Sores, unexplained bleeding, numbness or tenderness in the area around your mouth – like your tongue, lips and cheeks – should tell you that it’s time for a check-up.
  8. Unexplained weight loss. Are you dropping pounds without changing your diet or exercise habits? Call your doctor – even if you think they’re pounds you need to lose. Losing ten or more pounds for no known reason can be a sign of pancreatic, stomach, esophageal or lung cancer.
  9. Constant fatigue. Are you too tired to play with your kids? Or hang out with the guys after work? Are you constantly tired no matter how much rest you get? Don’t brush it off. Constant fatigue can be a sign of leukemia as well as some colon and stomach cancers.
  10. Persistent pain. Nagging back pain, a headache that won’t go away, abdominal or stomach pains – your doctor needs to know. “No pain, no gain” doesn’t apply to cancer. And, persistent pain, no matter the location, can be the first sign that something’s wrong.

Remember, having one or more of these symptoms doesn’t mean you have cancer. But if they’re persistent, you need to go in for a checkup.

“See your doctor and get your cancer risk assessed,” Bevers says. This assessment can help you understand whether or not you’re more likely to get cancer. That way you can make better choices to keep your body healthy and cancer-free.

Request an appointment at MD Anderson’s Lyda Hill Cancer Prevention Center online or call 877-632-6789.

Before you discount that persistent cough as just another part of flu season, you might want to ask your doctor to give it a second glance. According to a new study by Cancer Research U.K., more than half of adults have experienced alarm bells that could mean cancer, yet just two percent of them believed cancer could be a possible cause.

Researchers sent questionnaires to nearly 5,000 U.K. residents registered with general practitioners—in other words, men and women who have and visit a primary care doctor. Just shy of 1,800 people completed the questionnaire, and five were eliminated because they indicated they’d already been diagnosed with cancer.

They asked participants if, in the last three months, they’d experienced a host of different symptoms (some of which could be possible signs of cancer), ranging from persistent coughing and unexplained weight loss to having low energy. If they had experienced any of these symptoms, they were asked to write in what they thought caused it and whether it was serious.

“We aren’t sure why, but it seems there is a mismatch between what people know in practice and whether they apply the knowledge to themselves,” says study co-authorKatriina Whitaker, Ph.D., senior research fellow at University College London. “So while awareness of many of these signs and symptoms is quite high, very few people mention cancer as a possible cause when it’s them who is experiencing the symptom.”

Here, we take a look at the 10 symptoms researchers consider to be red flags. While they could be nothing, the researchers say the point is to recognize that they could also be cancer—and to ask your doctor to check your symptoms out.

1. Persistent Cough or Hoarseness
While a cough here and there is nothing to worry about, a consistent cacophony or a cough accompanied by blood is definitely cause for concern. “Most coughs are not cancer,” says Therese Bartholomew Bevers, M.D., professor of clinical cancer prevention and the medical director of the Cancer Prevention Center at the MD Anderson Cancer Center. “But certainly a persistent cough needs to be evaluated to see if it could be lung cancer.” Your physician should recommend a chest X-ray or CT scan to rule out cancer as a possibility.

2. Persistent Change in Bowel Habits
When your bowel movements aren’t as easy as they once were or your stool appears larger than normal or somewhat deformed, this could be a sign of colon cancer, says Bartholomew Bevers. “It could be a sign that there is a mass impeding the transit of the stool from the bowel,” she says. “This is a symptom where a person should go to the doctor and schedule a colonoscopy to see if there indeed is a mass.”

3. Persistent Change in Bladder Habits
“If there is blood in the urine, that could be indicative of bladder or kidney cancer—but more commonly this is a sign of a urinary tract infection,” says Bartholomew Bevers. Check for an infection first, then pursue other treatment options.

4. Persistent Unexplained Pain
“Most pain is not a sign of cancer, but persistent pain must be checked out,” says Bartholomew Bevers. “If you have persistent headaches, for example, you likely don’t have brain cancer—but it is still something that must be looked into. Persistent pain in the chest could be a sign of lung cancer. And pain in your abdomen could be ovarian cancer.”

5. Change in the Appearance of a Mole
While not all moles are indicative of melanoma, spotting a new mark or one that has changed is something you should bring up with a dermatologist who can screen for skin cancer, says Bartholomew Bevers.

Early detection is critical in treating #SkinCancer. Learn how to identify its warning signs http://t.co/ZLj60MVxSD pic.twitter.com/jiM5rwHACx

— SkinCancerFoundation (@SkinCancerOrg) November 20, 2014

RELATED: The New Signs of Skin Cancer You Need to Know About

6. A Sore That Does Not Heal
If you have a sore that’s hanging on past the three-week mark, you should bring it up with your doctor. “We would have expected our body to have healed itself by now,” says Bartholomew Bevers, “and you should absolutely get that checked out.” That kind of sore could be a sign of carcinoma.

7. Unexpected Bleeding
Vaginal bleeding—outside of your normal cycle—could be an early sign of cervical cancer, while bleeding from the rectum could indicate colon cancer, says Bartholomew Bevers.

RELATED: 10 Weird Things That Destroy Your Immune System

8. Unexplained Weight Loss
“As adults, we try very hard to lose weight,” says Bartholomew Bevers. “But if weight is falling off of you without any effort on your part, that is a big concern and can be indicative of a serious medical problem.” One of those problems, she says, could be malignancy or a tumor.

9. An Unexplained Lump
“Any time you have a lump that is new or a lump that is changing, that is something you should absolutely have looked at by your doctor,” says Bartholomew Bevers. While it could be a benign cyst (and likely is), it could also be “a cancer that is in the subterranean tissue. A lump in the breast, of course, is a very common symptom of breast cancer.” See your physician to get more information.

View this post on Instagram

A post shared by Bright Pink (@bebrightpink) on Oct 14, 2014 at 9:02am PDT

10. Persistent Difficulty Swallowing
Two cancers may be behind this symptom, including neck and esophageal cancer. “People who see these symptoms will often start to modify their diets, eating softer foods without thinking there could be a more serious issue.”

“The bottom line,” says Whitaker, “is that if people are experiencing any persistent symptoms, they should go to their doctor for advice.”

RELATED: The Health Symptom You Should Never Ignore

Jillian Kramer Jillian Kramer is a freelance journalist whose work has published in Food & Wine, Travel + Leisure, Martha Stewart Living, SELF, and more.

“Very few people mention cancer as a possible cause when it’s them who is experiencing the symptom.”

They asked participants if, in the last three months, they’d experienced a host of different symptoms (some of which could be possible signs of cancer), ranging from persistent coughing and unexplained weight loss to having low energy. If they had experienced any of these symptoms, they were asked to write in what they thought caused it and whether it was serious.

“We aren’t sure why, but it seems there is a mismatch between what people know in practice and whether they apply the knowledge to themselves,” says study co-author Dr Katriina Whitaker, senior research fellow at University College London. “So while awareness of many of these signs and symptoms is quite high, very few people mention cancer as a possible cause when it’s them who is experiencing the symptom.”

Here, we take a look at the 10 symptoms researchers consider to be red flags. While they could be nothing, the researchers say the point is to recognise that they could also be cancer—and to ask your doctor to check your symptoms out.

1. Persistent Cough or Hoarseness
While a cough here and there is nothing to worry about, a consistent cacophony or a cough accompanied by blood is definitely cause for concern. “Most coughs are not cancer,” says Dr Therese Bartholomew Bevers, professor of clinical cancer prevention and the medical director of the Cancer Prevention Center at the MD Anderson Cancer Center. “But certainly a persistent cough needs to be evaluated to see if it could be lung cancer.” Your physician should recommend a chest X-ray or CT scan to rule out cancer as a possibility.

“Most pain is not a sign of cancer, but persistent pain must be checked out.”

Getty Images

2. Persistent Change in Bowel Habits
When your bowel movements aren’t as easy as they once were or your stool appears larger than normal or somewhat deformed, this could be a sign of colon cancer, says Bartholomew Bevers. “It could be a sign that there is a mass impeding the transit of the stool from the bowel,” she says. “This is a symptom where a person should go to the doctor and schedule a colonoscopy to see if there indeed is a mass.”

RELATED: Why It’s Crucial To Talk About Your Poop

3. Persistent Change in Bladder Habits
“If there is blood in the urine, that could be indicative of bladder or kidney cancer—but more commonly this is a sign of a urinary tract infection,” says Bartholomew Bevers. Check for an infection first, then pursue other treatment options.

Getty Images

4. Persistent Unexplained Pain
“Most pain is not a sign of cancer, but persistent pain must be checked out,” says Bartholomew Bevers. “If you have persistent headaches, for example, you likely don’t have brain cancer—but it is still something that must be looked into. Persistent pain in the chest could be a sign of lung cancer. And pain in your abdomen could be ovarian cancer.”

5. Change in the Appearance of a Mole
While not all moles are indicative of melanoma, spotting a new mark or one that has changed is something you should bring up with a dermatologist who canscreen for skin cancer, says Bartholomew Bevers.

6. A Sore That Does Not Heal
If you have a sore that’s hanging on past the three-week mark, you should bring it up with your doctor. “We would have expected our body to have healed itself by now,” says Bartholomew Bevers, “and you should absolutely get that checked out.” That kind of sore could be a sign of carcinoma.

RELATED: 8 Totally Not-Dumb Period Questions You’ve Been Too Embarrassed To Ask

7. Unexpected Bleeding
Vaginal bleeding—outside of your normal cycle—could be an early sign of cervical cancer, while bleeding from the rectum could indicate colon cancer, says Bartholomew Bevers.

Getty Images

8. Unexplained Weight Loss
“As adults, we try very hard to lose weight,” says Bartholomew Bevers. “But if weight is falling off of you without any effort on your part, that is a big concern and can be indicative of a serious medical problem.” One of those problems, she says, could be malignancy or a tumour.

RELATED: Apparently There Are 7 Types Of Boobs – Which Do You Have?

9. An Unexplained Lump
“Any time you have a lump that is new or a lump that is changing, that is something you should absolutely have looked at by your doctor,” says Bartholomew Bevers. While it could be a benign cyst (and likely is), it could also be “a cancer that is in the subterranean tissue. A lump in the breast, of course, is a very common symptom of breast cancer.” See your physician to get more information.

likes – View Post on Instagram It’s time to #BrightenUp! All women (and men!) should know the signs & symptoms of #BreastCancer. Do you? #KnowledgeIsPower #AwarenessToAction

10. Persistent Difficulty Swallowing
Two cancers may be behind this symptom, including neck and esophageal cancer. “People who see these symptoms will often start to modify their diets, eating softer foods without thinking there could be a more serious issue.”

“The bottom line,” says Whitaker, “is that if people are experiencing any persistent symptoms, they should go to their doctor for advice.”

Source: Women’s Health

Doctors Ignored My Symptoms for Three Years Before I Was Diagnosed with Stage 4 Lymphoma

Eventually, my health started impacting my life as a whole. My friends thought I was either a hypochondriac or was desperate to marry a doctor since I was going in for check-ups pretty much on a weekly basis. Even I started to feel like I was crazy. When so many highly educated and certified people tell you there’s nothing wrong with you, it’s natural to start distrusting yourself. I started thinking, ‘Is it all in my head?’ ‘Am I blowing my symptoms out of proportion?’ It wasn’t until I found myself in the ER, fighting for my life that I realized that what my body was telling me was true.

The Breaking Point

The day before I was scheduled to fly out to Vegas for a sales meeting, I woke up feeling like I could barely walk. I was drenched in sweat, my stomach was in excruciating pain, and I was so lethargic that I couldn’t even function. Again, I went to an urgent care facility where they did some blood work and took a urine sample. This time, they determined I had kidney stones that would likely pass on their own. I couldn’t help but feel like everyone at this clinic wanted me in and out, regardless of how I was feeling. Finally, at a loss, and desperate for answers, I forwarded my test results to my mother, who’s a nurse. Within minutes, she called me and told me to get to the closest emergency room ASAP and that she was getting on a plane from New York. (Related: 7 Symptoms You Should Never Ignore

She told me that my white blood cell count was through the roof, meaning my body was under attack and doing everything in its power to fight back. No one at the clinic caught that. Frustrated, I drove myself to the closest hospital, slapped my test results on the reception desk and just asked them to fix me-whether that meant giving me pain meds, antibiotics, whatever. I just wanted to feel better and all I could think about in my delirium was that I had to be on a flight the next day. (Related: 5 Health Issues That Hit Women Differently)

When the ER doc on staff looked at my tests, he told me I wasn’t going anywhere. I was immediately admitted and sent for testing. Through the X-rays, CAT scans, blood work, and ultrasounds, I kept going in and out. Then, in the middle of the night, I told my nurses that I couldn’t breathe. Again, I was told that I was probably anxious and stressed because of everything going on, and my concerns were brushed off. (Related: Female Doctors Are Better Than Male Docs, New Research Shows)

Forty-five minutes later, I went into respiratory failure. I don’t remember anything after that, except for waking up to my mom next to me. She told me that they had to drain a quarter liter of fluid from my lungs and performed some biopsies to send for more testing. At that moment, I truly thought that was my rock bottom. Now, everyone had to take me seriously. But I spent the next 10 days in the ICU getting more and more sick by the day. All I was getting at that point was pain medication and breathing assistance. I was told I had some kind of infection, and that I was going to be fine. Even when oncologists were brought in for a consult, they told me I didn’t have cancer and that it had to be something else. While she wouldn’t say, I felt my mom knew what was really wrong, but was too afraid to say it.

Finally Getting Answers

Near the end of my stay at this particular hospital, as kind of a Hail Mary, I was sent in for a PET scan. The results confirmed my mother’s worst fear: On February 11th, 2016, I was told I had Stage 4 Hodgkin Lymphoma, cancer that develops in the lymphatic system. It had spread to every organ of my body.

A sense of relief and extreme fear flooded over me when I was diagnosed. Finally, after all these years, I knew what was wrong with me. I now knew for a fact that my body had been raising red flags, warning me, for years, that something truly wasn’t right. But at the same time, I had cancer, it was everywhere, and I had no idea how I was going to beat it.

The facility I was at didn’t have the resources needed to treat me, and I wasn’t stable enough to move to another hospital. At this point, I had two options: either risk it and hope I survived the trip to a better hospital or stay there and die. Naturally, I chose the first. By the time I was admitted to the Sylvester Comprehensive Cancer Center, I was utterly broken, both mentally and physically. Most of all, I knew that I could die and had to, once again, put my life in the hands of more doctors that had failed me on more than one occasion. Thankfully, this time, I wasn’t disappointed. (Related: Women Are More Likely to Survive a Heart Attack If Their Doctor Is Female)

From the second I met with my oncologists, I knew I was in good hands. I was admitted on a Friday evening and was put on chemotherapy that night. For those who might not know, that’s not standard procedure. Patients usually have to wait for days before starting treatment. But I was so sick that starting treatment ASAP was pivotal. Since my cancer had spread so aggressively, I was forced to go on what doctors called salvage chemotherapy, which is basically a curated treatment that’s used when all other options have failed or a situation is particularly dire, like mine. In March, after administering two rounds of that chemo in the ICU, my body began going into partial remission-less than a month after being diagnosed. In April, the cancer came back, this time in my chest. Over the next eight months, I underwent a total of six rounds of chemo and 20 sessions of radiation therapy before finally being declared cancer free-and I have been ever since.

Life After Cancer

Most people would consider me lucky. The fact that I was diagnosed so late in the game and made it out alive is nothing short of a miracle. But I didn’t come out of journey unscathed. On top of the physical and emotional turmoil I went through, as a result of such aggressive treatment and the radiation that was absorbed by my ovaries, I won’t be able to have children. I didn’t have time to even consider freezing my eggs before rushing into treatment, and the chemo and radiation basically ravaged my body.

I can’t help but feel that if someone had really listened to me, and not brushed me off, as a young, seemingly healthy woman, they would have been able to put all my symptoms together and catch the cancer way earlier. When my oncologist at Sylvester saw my test results, he was livid-practically yelling-that it took three years to diagnose something that could have so easily been spotted and treated. But while my story is jarring and seems, even to me, like it could be out of a movie, it’s not an anomaly. (Related: I’m a Young, Fit Spin Instructor-and Nearly Died of a Heart Attack)

After connecting with cancer patients through treatment and social media, I learned that so many younger people (women, in particular) are brushed off for months and years by doctors who don’t take their symptoms seriously. Looking back, if I could do it all over again, I would have gone to the ER sooner, at a different hospital. When you go to the ER, they have to run certain tests that an urgent care clinic won’t. Then maybe, just maybe, I could have started treatment earlier.

Looking ahead, I feel optimistic about my health, but my journey has completely changed the person I am. To share my story and raise awareness for advocating for your own health, I started a blog, wrote a book and even created Chemo Kits for young adults undergoing chemo to help them feel supported and to let them know they’re not alone.

At the end of the day, I want people to know that if you think something is wrong with your body, you’re probably right. And as unfortunate as it is, we live in a world where you have to be an advocate for your own health. Don’t get me wrong, I’m not saying every doctor in the world isn’t to be trusted. I wouldn’t be where I am today if it weren’t for my incredible oncologists at Sylvester. But you know what’s best for your health. Don’t let anyone else convince you otherwise.

You can find more stories like this about women who have struggled to get concerns taken seriously by doctors on Health.com’s Misdiagnosed channel.

  • By By Jessica DeCristofaro as told to Faith Brar

You generally assume that your doctor will listen to your needs and do something about any health concerns you have—that’s their job after all. But, as Sarah Hyland knows, sometimes it can feel like your doctor just isn’t listening, which is annoying at best and terrifying at worst.

The Modern Family star took to Twitter this week to crowdsource some advice for how to handle doctors who just won’t hear you: “For those who are chronically ill and in chronic pain: Have you had the experience of doctors not listening to you? If so, how do you not tear their heads off with your bare hands?”

Hyland, 27, has talked in the past about dealing with kidney dysplasia, a condition in which the internal structures of one or both of your kidneys don’t develop normally, which led to her kidney transplant in 2012. Last year, she also said on Twitter that she was having a rough year, health-wise, that led to weight loss, though she didn’t share the specifics.

She isn’t the only person struggling to get a doctor to listen. “This is very common,” health-care expert Caitlin Donovan, spokeswoman for the National Patient Advocate Foundation (NPAF), tells SELF. And it can cause real harm. “When a doctor doesn’t listen to a patient, an expert is being shut out of the room,” Donovan says. “Even though the doctor has the medical degree, as a patient, you are an expert in your own body, your own experience, and your own outcome goals.”

If a doctor isn’t tuning in to your concerns and really hearing the details of your experience, he or she can’t give you the level of care you deserve. “At worst, you can be misdiagnosed or not diagnosed at all,” Donovan says.

Lots of people replied to Hyland’s tweet, offering their own advice for how to handle this type of situation. Here are just a few of the responses:

1. Come to your appointments armed with extra information about your condition.

Do your online research on credible websites like the Mayo Clinic, CDC, and research universities, as well as any specialized foundations for your condition, if they exist. It’s hard for a doctor to ignore information from prestigious medical organizations with stellar reputations.

2. If you can, check out conferences and support groups for those with your condition.

It may not help you get all the answers, but it should help with some—and an informed patient can press harder for solutions with her doctor and ask the right questions.

3. Don’t be afraid to stress your concerns again and again.

“Advocate for yourself like you would for your child,” Donovan says. “We tend to be shy about speaking up on our own behalf, especially if we’re shivering in a paper gown in front of a doctor. But do it anyway. You need a doctor who understands you as an individual, not just as a collection of symptoms.”

4. Bring someone else with you to appointments.

It can be hard to press for help and answers in the moment, especially if it’s really not in your nature to do it. Taking a family member or close friend with you who can ask the follow-up questions you’re too nervous to bring up can help take the pressure off.

5. Keep a list of your symptoms and treatments.

It sounds basic, but this one is big. Donovan recommends writing down everything you want to discuss with your doctor, including your symptoms. That way, your concerns won’t get lost in the shuffle of the (probably short) conversation. It’s also a good idea to bring up whatever is most important to you at the beginning of the visit. “It’s more likely to be addressed that way,” she says.

6. Make sure your doctor wants to get to the root of your pain.

Sometimes your doctor may be focused primarily on addressing the pain you’re in right now, but that might not fix the underlying issue. If your doctor writes you a prescription without giving you an explanation of what they think is causing you distress, feel free to ask questions—like what else you can do to find the root cause of your pain.

7. If your doctor isn’t taking your pain seriously, it might be time to find a new doctor.

Unfortunately, sometimes it comes down to breaking up with your doctor. If you feel like your doctor is minimizing your concerns, don’t be afraid to seek a different opinion.

8. Know that your symptoms are real and deserve to be taken seriously.

It’s easy for someone else to be dismissive of your pain, but you are the only one who knows what you’re experiencing. Don’t be afraid to speak up again (and again) until you get the answers you deserve.

Related:

  • Sarah Hyland Gets Real About Dealing With Prednisone ‘Moon Face’
  • Why It Was So Crucial For Sarah Hyland to Get Her Kidney Infection Meds
  • The Best Way To Talk To Your Doctor, According To Doctors

Many people do not realize that medical malpractice claims can arise not only over blatant mistakes made during surgery or in the treatment of patients, but also in failing to treat patients. This phenomenon, known as “failure to diagnose” in the medical profession, can technically be a misdiagnosis, or a missed diagnosis. Doctors can be held legally liable for medical malpractice not only when they make an affirmative mistake, but also when they choose to do nothing in response to a patient reporting symptoms to them.

Specifically, the Agency for Healthcare Research and Quality (AHRQ) found that diagnosis errors are frequent and important, but represent an understudied area of patient study. Substantial percentages of patients that were part of the AHRQ study experienced missed or delayed diagnoses. This is arguably a part of a problematic pattern of doctors not listening to patients.

Specifically, failure to diagnose a condition while a patient is pregnant, going through delivery, or has just given birth, is considered medical malpractice if it leads to injuries to you or your infant. However, there are some criteria that first need to be established before a failure to diagnose can be considered medical malpractice.

Physician-Patient Relationship

This element is easier to establish if the doctor who failed to diagnose you is your primary care physician, but this is not required. Providing you with an examination is, arguably, enough to establish this relationship and reasonable expectation that a doctor not acts negligently.

Treatment Falls below Standard of Practice in Medical Community

Your doctor has a duty to act as a reasonable and prudent individual within that profession (i.e. as other doctors would have acted in similar circumstances) when it comes to treating patients. If they failed to do so and this resulted in injury or death to the patient, they can be held liable. The injured patient has the burden of proving this (with their attorney), usually by way of testimony from similar experts.

Action Resulted In Injuries at Issue

The patient also has the responsibility to prove that the doctor’s specific error (failure to diagnose, missed or delayed diagnosis, etc.) is what caused the patient harm in order to win compensation in a case.

Some of the conditions that are most commonly the subject of medical malpractice claims for failure to diagnose include several types of cancer and heart disease, sometimes which are misdiagnosed or ignored as more minor ailments. Sometimes the red flag for a potential failure to diagnose could be a doctor that is reticent to order necessary tests or examinations for a patient, failing to follow through on reported infections, not paying attention to a patient repeatedly complaining about an issue, etc.

Statute of Limitations to Bring Claim

In Louisiana, the statute of limitations (or time limit on bringing your lawsuit after noticing the issue) is one year from the date of the patient realizing that there was medical malpractice (or, arguably, should have known). The ultimate limit on this is three years from the date of the alleged malpractice.

We Can Help

Even if your condition was diagnosed correctly, you may have been harmed by the negligence of your doctor or medical professional for failing to timely treat your disease or condition. Sometimes even a short delay can dramatically affect the outcome of the treatment.

Harrell & Nowak has aggressively represented people who have suffered personal injuries in litigation. We have recovered millions of dollars in settlements and verdicts on behalf of clients, and we are prepared to help you today. If you or a loved one has been injured, contact our New Orleans personal injury law firm today for a free, confidential consultation.

What to do when your doctor ignores you?

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