I Knew... If Only the Doctors Had Listened to Me

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I Knew I had Lymphoma Cancer and The Doctors Did Not Listen

As I approach the one year anniversary of the end of my chemotherapy treatment for what was Hodgkin's Lymphoma, I feel compelled to educate others about the signs of Hodgkin’s Lymphoma so that I might raise awareness and hopefully help someone out there who could be harboring the same disease and not know it. Perhaps I chose today to go public with my horrid story, or complete medical failure by the best of the best at all the world class hospitals, in a city known for world-class medical care, to get to a quick and proper diagnosis, because today I had my first official haircut after losing it all to chemo last year. I have sat on my story for a year wondering how to share it and when and with whom. Today is the day.

For a year, prior to my diagnosis, I struggled with a terrible, body-wide, intractable itch. It is often referred to as "The Hodgkin Itch" since 30 percent of people harboring this cancer also have severe itching. It’s the kind of itching that has no rash, other than the scabs and scars you give yourself since you feel like you are being attacked from the inside out and outside in. It often worsens with triggers such as being outdoors in the heat and sun or eating high histamine foods, since the mast cells are basically degranulating when reacting to the cancer in this way. Nothing would make it better and nothing would make it stop, until the first night of chemo when the itching came to a sudden near halt. It felt like a miracle, as I had gotten to the point where I was unable to sleep as the itching flared at night. It had gotten to the point where I had lost any quality of life.

I Knew I had Lymphoma Cancer and The Doctors Did Not Listen

For a year, I researched my own case. For a year, I consulted doctor after doctor, asking almost everyone, "Could this be Lymphoma? I think this is Lymphoma! Over 30 percent of patients present this way!" Initially, each meeting with each new doctor would go the same way. They asked me if I was a doctor after listening to my detailed, educated and articulate presentation of my medical case, my endless blood tests, skin tests, and various diagnoses (ranging from Mast cell disorders to Small Fiber Neuropathy to possible Lupus; all of which were wrong). Once the doctors found out that I was not a doctor myself, they stopped listening. I was fired by several for not fitting into their business model of "diagnose within ten minutes or get out of my office." I was put on over 15 medications and creams, none of which made me better. All had negative side effects. I told those same doctors, "I have been getting worse not better since you put me on xyz medication. Did you see that last blood test? It is borderline low. It is another example of possible Lymphoma. Are you sure it isn't Lymphoma?" Alas, I was dismissed as were my theories.

Six months after a  world-famous, Harvard-affiliated doctor diagnosed me with a "Mast Cell Disorder," I found an enlarged lymph node in my neck. It was close to my clavicle bone and apparently an ominous sign. My primary care doctor freaked the moment she was shown what I had found. She started pummeling me with questions: "When was your last colonoscopy? When was your last mammogram? You need this biopsied ASAP. We do not like enlarged lymph nodes in this area."

I had dismissed it as a side effect of one of the meds I was on, even though Google pointed to it being yet another sign of Lymphoma. But since 25 doctors told me emphatically that cancer was not possible, I let it go for two months before showing the bump on my neck to my doctor. I had also begun coughing non-stop every time I drank or ate anything. I figured it was GERD but without the acid. Nope. It was masses pressing on my lungs and all over my chest cavity.

I woke up choking in the middle of the night. I thought maybe I had developed some sort of minor sleep apnea or snoring disorder in my "old age." Alas, nope, it was the masses that had developed near my trachea that were pressing on it. My skin tone had changed to a grey ugly pallor that no makeup could help, no matter how much I applied. I thought that this might just be what happened as you aged. A neighbor even stopped me to ask if I was anemic. Turns out I was, but I have come to find out that the grey skin tone seems to be a common subtle sign of cancer. Halfway through chemo, my skin tone reverted by to normal. Many commented on it.

I Knew I had Lymphoma Cancer and The Doctors Did Not Listen

Eleven months after the itching began, I found myself lying on an operating table with the head of Oncology surgery at the Brigham and Women's Hospital in Boston, as she attempted to remove the lymph node and send it for biopsy to determine if it was cancer and, if so, what kind. She escorted me to get a CAT Scan, horrified that not one doctor had ordered one in the year of my begging each one to consider my case and to consider that it could be cancer. I saw more than 25 doctors across three states, repeatedly asked them if I could have Lymphoma, and not one ordered a CAT Scan. Instead, they dismissed me, interrupted my analysis, halted my efforts to explain to them what I found online.

Six hours after the CAT Scan was done I found myself in front of the Mast Cell doctor as she sheepishly told me I had Lymphoma. It was not a Mast Cell disorder after all. She told me that I had five years to live.

My first reaction was total disbelief. "I asked you six months ago if this could be Lymphoma and you said no?" My eyes scanned the CAT Scan report, lingering on the word Masses, which littered the page. My doctor's eyes avoided mine, in favor of the computer screen separating us. "So you can go eat a Lobster roll now as you do you not have a Mast Cell Disorder. It was the cancer making the mast cells act like that." I thought to myself, "Seriously? All she can think to say is go eat a God damned Lobster roll? And how does she know I only have five years to live?" Not the things you say to a cancer patient and not accurate, thank God.

I worried about how I would tell my mother. She had lost everyone, including her granddaughter. I could not be yet another burden to her endless inventory of early family deaths.  

Luckily for me, I "only" had Hodgkin's Lymphoma, the most curable of cancers. Most of us will get to an 85% cure rate, usually with the help of 12 grueling rounds of ABVD chemotherapy (that is four different chemo agents given one after the other on chemo infusion days) and another month of Radiation.

After finally being diagnosed, one oncologist told me that I was the "poster child for Lymphoma" in terms of my symptoms: itching, night sweats, coughing and an enlarged lymph node ultimately, along with mild anemia, elevated SED rate, and absolute lymphocytes that were dropping like a rock over several years. She stated, "You could have had drive-through chemo if that had been caught earlier." In other words, four maybe six rounds of chemo, not 12, and no radiation.

Unfortunately, by the time it was accurately diagnosed, I had stage four Hodgkin’s Lymphoma, and it had spread to my sternum. Therefore the need for radiation. Having heard and read about the horrid side effects of radiation, I opted for something called Proton Radiation which does much less damage to the body, since it hits the cancer target and falls off. Traditional radiation, on the other hand, goes through you while damaging everything in it's path. For those of you who might be facing certain cancers (breast, prostate, brain and Lymphoma), I urge you to seek out proton radiation as a better alternative.

Fast-forwarding to post-treatment: I had a great six month CAT Scan and continue to be "cured". I am lucky. But I still wish I had been diagnosed earlier. I suffered dearly for the full year leading up to the diagnosis, and now I continue to deal with the impact and side-effects of the chemo and radiation daily.

Unfortunately, the demise of our health care can be partially attributed to the demise of proper reimbursement of office visits by insurance companies. And to the increasing pressure the hospitals put on their doctors to see ten times the number of patients than they can possibly diagnose and treat properly. Doctors have hit burn out. Favoring "business models" over patient care and time to diagnose. The only answer is to demand to be heard and, if you ever think you have cancer, get yourself to a doctor that is affiliated with a cancer hospital ideally. Alas, the catch-22 here is that cancer facilities demand that you already be diagnosed with cancer prior to being seen. I keep asking myself what I could have done differently to have gotten anyone to hear me. No one seems to be listening. At least none of the doctors I went to. What could I have done to have gotten diagnosed earlier? Early diagnosis is half the battle in curing cancer.

What is the moral of this story besides learning the signs of Hodgkin's Lymphoma? Trust yourself. You know your body and you will do ten times the research online than any doctor will do on your behalf (and if you are smart, you will look up the information on the correct reliable websites such as Mayo Clinic, for example, and not some blogger's site). In my case, all I had to do was Google "causes of chronic itch". The Lymphoma answer was on the first page of every Google search. Shame on the doctors that failed to even do this to rule in or out my own concerns. Alas, their lack of knowledge and clear lack of curiosity prevailed. For reference, most of my medical consults and doctors were in Boston – a city widely hailed as the top city for medical care in the country.

All that is now behind me. Luckily, one fabulous cancer facility does exist in Boston, called Dana Farber. They saved my life and did so with a kindness and compassion that I have never witnessed at any other medical facility anywhere. The first day I walked into Dana Farber, I was still in shock. I saw so many sick people in line for registration, in line to check in, in line to get bloodwork done. My reaction was immediate: "I am not a member of this club, I am not a member of this club." Seven months later, as I had learned I was cancer-free, I entered the elevator and without realizing it, I said out loud, "Thank God for this place". The 11 other people behind me piped in in unison with a chorus of "Amens."

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What do you think?

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Diana Shoolman
By Diana Shoolman
100 - Explorer
1 month ago

By some strange luck, I had gained a few pounds by the time I was diagnosed but that was due to perhaps a side effect of the medications I had been put on that did nothing for the itching. (gabapentin).

Diana Shoolman
By Diana Shoolman
100 - Explorer
1 month ago

It took a year from the time the itching started and progressed until diagnosis. The itching started April 2015, the lymph node developed on my neck in Feb of 2016. In December of 2015 I had lost a lot of weight. I had night sweats, fatigue, etc. No fever. SED rate was high at 33. I forget how low the Lymphocytes went but they just kept creeping lower. It should not take a year to diagnose this issue especially if your itching gets worse with medications. If in doubt, ask for a cat scan.

deedee
By deedee
15 - Community Member
1 month ago

How long from the first symptom (itching?) to diagnosis?

After the itching, was it then weight loss...fever...lymph node?

How low did the absolute lymphocytes go?

Knittymom
By Knittymom
15 - Community Member
4 months ago

Hi I have been tormented my this intense phantom itch on my scalp next and back for a few months. I wake up scratching. I have tried all the OTC meds for itching. But for almost a year I have had a terrible cough that just doesn’t get better. I have asthma so the doctor has been trying to adjust the meds. But no chest X-ray even with all the itching. It’s terrible. Last week I found two neck lumps and finally a doctor took notice. I had the ultrasound this morning.

Diana Shoolman
By Diana Shoolman
100 - Explorer
1 month ago

I am sorry I just saw this post. I am concerned about your symptoms. The coughing combined with the itch. Get a cat scan. If it has continued. Though more common for the itching in Lymphoma is for it t begin on the legs. Ore recur on the lower limbs. My itching was everywhere by the time I was diagnosed. But not on the head/scalp. Perhaps your shampoo is in need of swiping out for one that is fragrance free, and organic? Assuming your X-ray and cat scan are all clean.

Diana Shoolman
By Diana Shoolman
100 - Explorer
1 month ago

I hope you got the nodes biopsied. Did you? Are you ok?

James Prazak
By James Prazak
15 - Community Member
5 months ago

My wife has H.L. stage 2B due to her 10cm tumor in her medial steinem. Her itching is really bad. She had her first treatment of AVBD four days ago and her itching is not any better. How long did it take for the itching to stop? Thanks.

Diana Shoolman
By Diana Shoolman
100 - Explorer
1 month ago

I am so sorry I just saw this post. I would have replied much sooner. It can take a while for the itching to totally disappear. I was lucky that night one of chemo it was 75% gone. The last 25% took many more months to resolve. The lower limbs itched off and on for almost a year. Freaking me out when it returned post treatment. Then resolved completely. How is your wife doing now? Feel free to contact me directly for more advice. deedeedrums@me.com. Happy to help any way I can.

Diana Shoolman
By Diana Shoolman
100 - Explorer
6 months ago

https://moffitt.org/cancers/hodgkin-lymphoma/faqs/what-does-a-rash-from-hodgkin-lymphoma-look-like/

The above website page from Moffit cancer Institute also does a good job describing the Hodgkin Itch and reasons why this symptom appears and how it presents itself.

Diana Shoolman
By Diana Shoolman
100 - Explorer
6 months ago

https://www.verywellhealth.com/what-is-the-hodgkin-itch-2252417

this link might help explain the Hodgkin Itch associated with the cancer...

Olivia Donato
By Olivia Donato
15 - Community Member
6 months ago

Hi Diana, I am having the same problem with the chronic itch, it has been going on for about six months now. Did over the counter anti-histamines provide any relief for you?

Diana Shoolman
By Diana Shoolman
100 - Explorer
6 months ago

No. I was on six different forms, OTC and prescription. And gabapentin. Nothing worked because it was the cancel cells causing the itch and mast cells degranulating as a result of the cancer.

Diana Shoolman
By Diana Shoolman
100 - Explorer
6 months ago

Happy to discuss your case off line if you like ie: shoolmanadvisors@me.com

Jennifer Bauman
By Jennifer Bauman
20 - Community Member
7 months ago

Who do you suggest someone who has had a chronic itch for months now and night sweats see first? A dermatologist, GP, Oncologist?

Diana Shoolman
By Diana Shoolman
100 - Explorer
7 months ago

An oncologist ideally. But it is catch 22 as you generally need a positive cancer diagnosis to get into see a oncology hematologist. You should at a minimum see a non oncology hematologist. And have bloods run. However most doctors missed the obvious in the labs. A Hematologist MIGHT have figured it out. Best way to rule out this cancer: CT scan, PET Scan. Dermatologists are idiots when faced with this issue which is shocking to me. How old are you?

Diana Shoolman
By Diana Shoolman
100 - Explorer
7 months ago

Feel free to contact me directly. deedeedrums@me.com

Diana Shoolman
By Diana Shoolman
100 - Explorer
7 months ago

I have a few other comments: Look up symptoms of Lymphoma, especially the B symptoms: Listed as night sweats, weight loss, coughing (for me due to masses on lungs), fever, etc, If you are near menopause that could be reason for the night sweats. IE Hot flashes. If not, and no dermatologist noted a rash with a direct cause to the itching, and you don't think you are allergic to something be it laundry detergent, food, etc, then read up on the symptoms.

Diana Shoolman
By Diana Shoolman
100 - Explorer
7 months ago

The marks on my legs in the photos are from my own scratching which caused the scabs and scars and blood. Not from any rash that appeared. You could not get at the itch. Are you more itchy after a shower or after eating high histamine foods?

Jennifer Bauman
By Jennifer Bauman
20 - Community Member
7 months ago

I sent you an e-mail

Laura Grayson
By Laura Grayson
15 - Community Member
11 months ago

Dearest Diana - I had no idea... I send you hugs and perhaps we can have a Skype call.

We will always have Aspen xoxo
Laura

Carol Cal
By Carol Cal
15 - Community Member
1 year ago

Amen. To a smart angry and. Courageous women like Diana

Jamie Ferrell
By Jamie Ferrell
940 - Ambassador
1 year ago

This is an incredible story. I'm so sorry you had to suffer for so long before getting diagnosed, but am so glad you're healthy now. Blessings to you!

Katy Silb
By Katy Silb
15 - Community Member
1 year ago

This is my second time reading this and again my eyes well up with sadness for what you have had to go through. Thank goodness you never lost your will despite the frustrations and despair of being denied the courtesy of being listened too. With all the strides in medical research, I truly feel we have taken a step backwards, in may ways. Diana, so glad your story has had a happy ending. May you continue to enjoy a long life being Cancer-free, and may your wisdom continue to serve you well. Hugs

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