Don't underestimate Hashimoto's disease- my story

cherrycutie

Hello everyone-
I am a thyroid cancer survivor. At age 43, I began feeling sluggish and noticed my hair was falling out. One day, I slept for 20 out of 24 hours, you couldn't have woken me if the house was on fire! That night, I woke up startled and felt a golf-ball sized lump in the front of my throat. After much rigamoroll w/ the medical community ("you're going thru menopause", "you're depressed about gaining weight") and other such BS from doctors, I finally pushed hard enough to be tested & biopsied. Lo 'n behold, I was dx with papillary thyroid cancer. Later I was re-diagnosed w/ diffuse sclerosing variant of papillary thyca, a rare but stubborn form still in the papillary dx of thyca. Long story short, I am now 3 years and 3 months out. I live in a rural area of Western Massachusetts (USA) and was misdiagnosed, ignored, and when finally dx with thyca, told that my symptoms "couldn't have presented the way that I say" and almost went thru surgery that would have greatly diminished the quality of my life. I also JUST learned (3 years and 3 months out) that when my cancerous thyroid was removed, I had advanced Hashimoto's! I was never given this info before, so I looked into it. I saw some reports that up to 53% of thyca survivors are found to have hashimoto's when they are having their thyroids removed, and most of them don't know it! My endocrine doc said she believes I had hashimoto's for a "very long time", that my mother also had it, and other female relatives too. I want to tell all of you to not let any doctor treat your hashimoto's like a "minor" illness, it CAN lead to thyca! I also want to urge all of you facing thyca and other serious thyroid issues to get yourself to a major cancer/thyroid center FAST! If I had not gone to Dana Farber Cancer Institute in Boston, I would't be here today, or I would be seriously disfigured and still battling with these boondock docs!
I'm sure you can sense the bitterness in my post- my family and I were literally making arrangements for "when I wasn't here", and the reason I was initially told by local docs that my symptoms couldn't be as I said was because I had a rare, agressive type of thyca that was misdiagnosed. PLEASE consult with a cancer center that has experienced ALL types of thyca and thyroid diseases-it literally saved my life.
You CAN get thru this!
Love, cherry

miladyx

thank you for sharing your story
Hi Cherry -

How are you doing now? are you "cured"?

nasher

thank you for shareing
I
thank you for shareing

I have also posted my story a few posts down and it makes me feel good that someone else posted as well...

Glad i didnt have Hashimoto's

I really lucked out that I had a hearing condition that was repairable and sent me to an ENT who noticed the enlarged thyroid and removed the thyroid finding out it was cancer.

I agree alot of doctors do that minimilazation of alot of diffrent things and i would not consider any condition similar to any of these to be small.

good luck

hope to hear more of your story and how you are doing

cherrycutie

miladyx said:

thank you for sharing your story
Hi Cherry -

How are you doing now? are you "cured"?

from cherry
Hi Miladyx-
Thanks for asking about me. Currently I am "cured". My initial surgery (Sep '07) followed by RAI missed some of the thyca due to the local docs not treating it agressively. With papillary thyroid cancer, the docs have this idea that it's not an "emergency" and it's "slow growing".....WRONG! I don't remember the exact size, but my tumor more than doubled in 9 weeks because I had the unusual subtype of papillary thyca (diffuse sclerosing variant). The local docs weren't vigilant and failed to remove cancerous lymphnodes. So I had a recurrance in March '08. I don't feel this was an actual recurrance but rather a result of cancer left inside of me, but in order to cover their @$$es, the docs labeled it "recurrance". Strange as it may sound, I "felt" the cancer form in June '07, I still "felt" it in my body after the initial thyroidectomy (Sep '07), and I "felt" it until June '08 when I had a second surgery at Dana Farber. This surgeon removed approx 30 lymph nodes, of which I think 19 were cancerous.
Now, 3+ years out, I feel I am very lucky and blessed. For anyone who may not have read my initial post, I would probably be dead by now if I hadn't gone to a major cancer center. I have some problems with energy, the glands in my neck are enlarged, and my seasonal and skin allergies are worse than ever. My endocrine doc says that's normal for someone who's had thyca, mainly due to the RAI. But I'm HERE, telling you my experience. Yes, it is difficult, but you WILL get thru it. If you don't feel your docs are taking your concerns seriously, PLEASE seek another opinion. It could be the difference between life and death.
Love, cherry

kasday

same history
appt with dana farber on tues, hashimotos with spread. From western ma. Misdiagnosed for over 10 years. I can give dates that things changed for me and can explain where and when I felt things spread to. It is nice to hear 3 years, It is hard to find long term stage 4 scenarios. I alternate from being so angry at my doctor to scared this cant be caught and maintained so that I can be here for my kids. I am 43 female at diagnosis. 2.5cm. variant

miladyx

kasday said:

same history
appt with dana farber on tues, hashimotos with spread. From western ma. Misdiagnosed for over 10 years. I can give dates that things changed for me and can explain where and when I felt things spread to. It is nice to hear 3 years, It is hard to find long term stage 4 scenarios. I alternate from being so angry at my doctor to scared this cant be caught and maintained so that I can be here for my kids. I am 43 female at diagnosis. 2.5cm. variant

kasday Stage 4?
Hi Kasday - i am sorry to hear about your diagnosis? May I ask what makes it Stage 4? Do you have distant metastasis? do you have diffuse sclerosing variant?

researchdiva

cherrycutie said:

from cherry
Hi Miladyx-
Thanks for asking about me. Currently I am "cured". My initial surgery (Sep '07) followed by RAI missed some of the thyca due to the local docs not treating it agressively. With papillary thyroid cancer, the docs have this idea that it's not an "emergency" and it's "slow growing".....WRONG! I don't remember the exact size, but my tumor more than doubled in 9 weeks because I had the unusual subtype of papillary thyca (diffuse sclerosing variant). The local docs weren't vigilant and failed to remove cancerous lymphnodes. So I had a recurrance in March '08. I don't feel this was an actual recurrance but rather a result of cancer left inside of me, but in order to cover their @$$es, the docs labeled it "recurrance". Strange as it may sound, I "felt" the cancer form in June '07, I still "felt" it in my body after the initial thyroidectomy (Sep '07), and I "felt" it until June '08 when I had a second surgery at Dana Farber. This surgeon removed approx 30 lymph nodes, of which I think 19 were cancerous.
Now, 3+ years out, I feel I am very lucky and blessed. For anyone who may not have read my initial post, I would probably be dead by now if I hadn't gone to a major cancer center. I have some problems with energy, the glands in my neck are enlarged, and my seasonal and skin allergies are worse than ever. My endocrine doc says that's normal for someone who's had thyca, mainly due to the RAI. But I'm HERE, telling you my experience. Yes, it is difficult, but you WILL get thru it. If you don't feel your docs are taking your concerns seriously, PLEASE seek another opinion. It could be the difference between life and death.
Love, cherry

Hashimotos
Cherry,

Where do u live in Western.MA? I live in Franklin CT. I have been struggling to find an endo that i can work.with. I was diagnosed with hypothyroidism 3 yrs ago along w Hashimotos. Now in the last 3 months I have developed a pervasive itch and terrible eczema. I have gaigained 25 lbs in the last 6 weeks, with no change in my eating and excercise.habits. I have finally found a new endo that I will b seeing on Wed. in Springfield. My blood tests are worrysome now...showing hi inflammation...cud b lymphoma or lupus. Auto.immune diseases run in my family. I am trying not to freak...but not doing a good job