Hi. I am 28 and and was diagnosed with hurthle cell carcinoma Wednesday. Is there anyone here that has had a positive outcome with this type of thyroid cancer. I know it is more aggressive and doesn't respond well to RAI. I also know that being so young increases my chances but my nodule was 7.5cm which worries me.
On 2-20-08 my Dr removed my left nodule and isthmus. My final diagnosis says "Hurthel cell carcinoma. 7.5cm in dimensions, appearing limited to the thyroid gland."
That "appearing limited" sounds great to me. But my Dr says he's going to be "extremly aggressive" with treatment. Is this good or bad?
Also I now not only have one surgeon but two! (My surgery was pushed back a week so this guy could be there) I am scheduled to meet with the second surgeon next week and the Endo the day before surgery.
Maybe I should be flattered that they are being so careful with my case, but it scares me. Especially since I have been given the worst case senario, which includes possibly removing part or all of my STM's if the cancer has spread there! How will I move my neck if that happens?! (I couldn't form the words to ask this question at my preop"
As for now the plan is to remove the right lobe and surrounding lymph nodes which will be tested during surgery. If the lymph nodes are cancerous they will remove all the lymph nodes from my neck and test the muscle and remove that if necessary. Which "cosmetically" could leave me deformed he said. Has anyone heard of such agressive treatment? I don't recall him saying anything about vascular invasion which is why I'm asking. But I will ask next week since I now have a ton of questions.
I did manage to ask about chemo and was told "we are going to take this one step at a time but we can't rule it out." So we haven't dicussed RAI but I will request it.
I am really nervous and trying my best to be positive. I was applying to nursing school for the fall but will hold off on my application for now. Most of my teachers are willing to work with me so I can finish this semester. Everything is moving so fast it's hard to stop crying and concentrate on anything other than cancer.
Any information, comments, prayers, or support will be greatly appreciated. The post from other members have been more helpful than you can imagine and I plan to keep my posts updated to help others.
Thanks and God Bless.
Hurthle cell thyroid cancer is really a variant of follicular thyroid cancer. Yours is on the larger side, so they are being agressive surgically, which is great. They don't want it to spread, and it's usually treated with RAI, and chemo. isn't really effective for hurthle cell, and RAI is more effective. The other therapy they rarely use is regular radiation, but they will likely try RAI first.
I had pappillary that spread to the muscle in front of the thyroid---they removed the muscle along with the thyroid, on the left side where the nodule was, and there's absolutely no deformity in my neck, function wise, and cosmetically---it looks the same on both sides, no issue there whatsover. I would ask the next surgeon about that as well.
Just make sure you have the best thyroid surgeons---if you have any hesitation, try to find another for a second opinion.
You can also have your pathology sent for a second opinion---I would choose a cancer hospital, like Sloan Kettering, or MD Anderson, or any real quality cancer hospital---because it's strange that they didn't say if they got all the margins or not, and I would want to know that (that is the vascular invasion, etc.)
Definitely send in your application---thyroid cancer especially, but any cancer shouldn't make you put off your life plans----you will beat this, you just have to take this day by day, and if that's too hard, hour by hour, but you have to look beyond this, because you are really going to be alright once this is over.
Ashley
I havent posted on here for about a year but after reading your post i thought i would respond.I had a 2.6cm nodule that was hurthle cell carcinoma.I had surgery on Dec 12th of 06 and RAI just a couple of weeks later on thw 27th.I was 43 at the time.I was diagnosed as stage 1 with no spread or lymphnode involvement.I recovered quickly from the surgery and all of my subsequent blood tests and WBS have been negative.Today.15 months later i feel great.I have totally revamped my diet and the way i excersise and i am in the best shape of my life.I am on 187mcg of synthroid and my last TSH was 0.22.I take my synthroid every night at 10pm(its easier with all the supplements i take)and i actually sleep better taking it at night.I used to take it at 5am every morning.Your nodule is big as was mine but you will do fine.You are young so keep a positive attitude and dont believe everything you read on the internet or get caught up in statistics or you will drive yourself crazy.If you have any questions i will do my best to answer them
To your good health
Roman
Thank you Roman and Reese for replying to my post. It's a geat relief to hear how well you guys are doing. I guess that's probabaly why I'm on this board in the first place. It really makes me feel better. I know I have a long road ahead of me and I'm hoping for the best.
Any advice on how to prepare myself for treatment? Should I change my diet? Right now I eat alot of grilled and baked fish, chicken and veggies. I don't eat much pork or beef. I've deprived myself of cofee also . I know the fish will have to go. Roman how have you revamped your diet? Was it pre or post treatment?
I want to do everything I can to beat this. I'm sure I'll have more questions after I speak to the other surgeon.
Hi Ashley
The revamping of my diet came after my surgery.My main concern was to keep the cancer from coming back now that it was out.I became extremely interested in nutrition and why i had gotten cancer in the first place.I truly believe my cancer was caused by my excessive drinking of coke(sometimes 6 or 7 per day)I ate a fairly balanced diet and did not smoke or drink.I now know that 1 can of coke has 7 tablespoons of sugar in it and can supres your immune system by as much as 50 percent.
After my surgery i immediately stopped drinking sodas.I now only drink purified water and herbal teas.I cut out almost all sugar,dairy,white flour and animal protein.(every now and then ill have some fish or organic beef).i eat alot of organic fruits and vegetables and sweet potatoes.My wife owns a restaurant and is a great chef and has taught me alot about preparing healthy tasty meals,
Every morning i start my day with a glass of warm lemon water to flush out the liver.I then have a superfood smoothie with various superfood powder mixes with some yougurt,fresh ground flaxseed,ground apricot kernels(for B17)
various fresh berries.VIT C powder,brazil nuts(for selenium)a scoop of chlorella powder,a little almond milk,a dash of cayenne pepper(to purify the blood)and some aloe vera juice(only thing that has all 8 glyconutrients),some times i will throw in a banana and some grapes as well....this is very filling and keeps me going until about 11am.I then usually snack on things like walnuts,carrots and celery.
I also try to juice a couple of times a day>i bought a juicer that slowy grinds so you dont lose any enzymes.I juice 3 carrots,2 green apples and some kale with a little bit of garlic,ginger and cilantro thrown in.
I have found that my diet gives me tons of energy.I realize my switch was kind of extreme but i was very motivated to stay healthy...Since then i have met several people who have beaten serious cancer by using various natural methods(mostly Gerson Therapy).Its amazing what your body can do to heal itself given the proper nutrition.
Before my surgery i was 195lbs at 5'9.Now i am at 168lbs and 4% bodyfat.My blood pressure went from 139/80 to 115/70.
I also supplement with co-q10.beta glucan,vitamin d3,quercetin,Vit C just to name a few..
I lift weights 4 times per week and do various cardio 3 times per week at 45 mins each time..Basically my cancer to me was a wake up call and i consider it a positive thing and not negative
Almost forgot i also take a yoga class now and do rebounding on a mini trampoline(cleans out the lymphatic system)
Anyway hope i didnt drag on to much..Be proactive in your health and stay positive and you will be just fine.This board was very helpful to me when i was first diagnosed and freaking out,
God Bless
To your good health
Roman
Wow!! Thanks Roman. That's alot to soak into my brian taking into consideration all the other info being thrown at me. But I will try. I know organic is the way to go whether you have cancer or not. I was already in the process of switching things in the cabinet to organic (have to sneak them in to trick my daughter) and buying organic fruit from Wholefoods. I gave soda's up for lent almost six years ago and haven't been able to tolerate them since. Is chicken ok? Have you gone almost completly vegitarian? I will check into Gerson Therapy also.
One more question. Should I exercise more until my next surgery to help me recover faster? Or does that not matter at this point. I do 30 mins of cardio 2-3 times a week. Thank you so much Roman. You have been a tremendous help.
God Bless
My name is Tina and i am having my surgery in about 10 hours...They are doing a total thyroidectomy. I have 2 tumors 1 in the left lobe and a small one in the isthmus. I also have hurthle cells but don't know yet if it is cancer or not I think that you have come to a good site to talk to people...There are alot of people who have experienced all this stuff and they have a way of calming a person down and helping them learn along the way...
I hope all goes well with you...
Tina
Thanks Tina. I hope all goes well with your surgery. The recovery of my partial was a breeze. My voice is still a tad off but not very noticable at all. My only advice is pillows...lots of them. I slept on my back until my follow up and I was allowed to stretch my neck (about two weeks). I barely took any pain meds. I'm sure everything will be fine and I will keep you in my prayers.
God Bless
Ashley
Good for you on giving up sodas!
I shop at whole foods myself..its a great store.
I try to keeep my diet around 80-20...80 percent vegetarian
I mainly try to stay away from pork and red meat>They are very hard to digest.look into taking digestive enzymes as a supplement they are very important..
Keep doing the excercises you are doing but give yourself a little time(week or so)after the surgery to recover and then ease back into it..
Check out gersondotorg
This is only for extreme cases of cancer but i do part of it because its a great preventative and healthy for you...i try to juice 2 or 3 times per day.
I doubt very seriously that you will need it because after your surgery and RAI you will be fine
Have a Great day
To Your good health
Roman
Thank you so much Roman for all of your advice. This is still very new to me and I want to do everything right.
I'm a little more comfortable with my diagnosis but i'm still nervous about wat will happen after the surgery. I meet with surgeon #2 Friday and surgery on Tuesday. I'm ready to get it over with so I can start recovering and continue with my life.
Thanks you guys for all of your support and advice. It has been a tremendous help.
God Bless
Thank you so much Roman for all of your advice. This is still very new to me and I want to do everything right.
I'm a little more comfortable with my diagnosis but i'm still nervous about wat will happen after the surgery. I meet with surgeon #2 Friday and surgery on Tuesday. I'm ready to get it over with so I can start recovering and continue with my life.
Thanks you guys for all of your support and advice. It has been a tremendous help.
God Bless
I am now 18 days post surgery. The surgery itself went great except it was more painful than the first one but not unbearable. The Dr said I should heal faster than the first time which was true with the exception of the extension of the original incision. It's taking it's time to heal. My calcium levels dropped while i was in the hospital which caused some concern about the function of my parathyroids but they are back to normal.
My pathology report showed no signs of spread to either my right lobe or the lymph nodes, which is great. I feel like I can breathe again.
I am taking Cytomel 25mg twice a day for right now. We plan to schedule my RAI treatment when I go back to the endocrinologist at the end of this month. I have stared to watch my salt intake already and switched to noniodized salt. Also I am eating mostly fresh raw fruit and and steamed vegetables with a small amount of carbs, chicken, turkey and fish. I have to start now becasue I'm from Lousisana and my diet originally consisted of alot of seafood.
I am so glad the first part of the journey is over. I am adjusting to the Cytomel. It seems that it makes my energy levels fluctuate and I tire very quickly. But after a short rest i'm ready to go again. I know i still have a bit of road still ahead of me but I believe the worst is over. I will keep praying and let God guide me. I'm hoping the body scan comes back clean as well when that time comes.
This experience has changed almost every aspect of my life. I believe eveything happens for a reason whether u know it or not. This has really forced me slow down and take a look around me and at myself. Something I never had the time to do before. I never noticed all the little miracles happening around me. I'm happy that I have been given the opportunity to appreciate them and the opportunity to continue to experience them.
God Bless all of you and thank you for your support and kindness and for sharing your stories. I will continue to post until this is all over. Love Ya!
Thanks for the update....congrats on being almost at the end of this.....wishing you much success with the rai and your little trip to hypo world----i hope you get all clear!
Hi Tina
I just read your post. How did your surgery go? I have just been diagnosed with hurtle cell on a nodule 7.5cm on the left lobe. I will need to have surgery to remove the nodule and like you I am uncertain until then if it is cancer or not. With the research I have done so far I am wondering about a thyroidectomy as opposed to just the lobe being removed. How was the decision made for you? I hope all has turned out well. Best wishes. Debbie
As far as I know Tina's surgery went well. I am replying because I don't think she will get a notice to this thread to respond and I know how it is to be in search of answers and eager to hear from other people. If you click her user name it will give u some options to find her latest posts. There is alot of information and support here. I think i would have pulled my hair out if it wasn't for this board. I wish you the best.
Thanks Ashley- Yeah, I'm pretty much wading through all the information out there and not real confident with my doctor, so searching through specialists at least relatively near me, as well.
Thanks so much for your reply. I read through so many messages on this board yesterday and gained so much information. Peolpe seem very supportive and it is nice to hear from people who have/are actually going through this! A board of angels I would say! Debbie
Hello everyone. I am so glad I found this site. I have been able to find out so much information. I want to thank everyone for that.
Ashley, I want to say...you are so very strong! I guess I should start at the beginning. I went in for some blood work in Jan 07 they found that I was Hyper not Hypo. I was sent for a US. They found 3 nodules. I in both lobes and one of the isthmus. they were all about 2.5cm. I had a FNA on only the bigger one in the right lobe. They said it was begin Hurthle Cell. So they told me to come back in 6 months and watch it.
2007 was a bad year for me. My 28 year old sister had a very rare and deadly form of cervical cancer...small cell carcinoma. She had been on every treatment out there for the last 2 years. She was losing her fight. I also married in July 07.
In Oct. 07 I noticed the lump in my neck was just a little bigger, and told my DH that I need to go back and have it checked out. Well Meredith was not doing well at all and was in the bed all the time now. So I spent all my time with her and did not worry about these nodules.
Meredith died Nov. 24, 2007. My world fell apart. This was my baby sister. I did not do anything until about the end of Dec and had another US, all the nodules have grown 1 cm. So now they are all about 3.5cm. Went to a new endo and he said that I need a TT. I am scheduled to see 2 different surgeons next week. I know that is very important.
I have dealt with cancer fo rthe last three years and watched my sister die form it at 28 years old. I just don't know if I can take anymore. I am so scared of this surgery. I can't tell you how scared I am. I try not to be and think about everything Meredith went through, but I am still so scared! I don't know what to expect during and right after and a week after. I was wondering if you can tell me about your experiences. Thank you.
Kerri
I am so sorry for your loss.I cant imagine the grief you must feel from losing your sister at such a young age.Im sure your sister would want you to fight on with everything you have.Please stay strong and positive.You need to take care of yourself now.Use your sisters love and memory to help get you well again.
Roman
TT for Hurthle cell carcinoma Dec 06
Mom died of breast cancer in 92
Father a prostate cancer survivor
Sister a cervical cancer survivor
. I know the fish will have to go. Roman how have you revamped your diet? Was it pre or post treatment?
I think that you have come to a good site to talk to people...There are alot of people who have experienced all this stuff and they have a way of calming a person down and helping them learn along the way...
