If you live near a major city, near major hospitals I think you would be better off with an endocronologist---although I would make sure the endo. has experience with thyroid cancer patients. It is unique to cancers, and they are the specialists with thyroid cancer---I've done well with my endo so far. They work with it in hospitals during their training, and the endocronology associations do research in it.
Sometimes, if you have a stubborn cancer, you might work with a radiation oncologist.
I worked in an oncology practice for 12 years and it was very rare to see a thyroid cancer patient. If we did see one, they were typically referred back to the endocrinologist. I can count on one hand the number of thyroid cancer patients seen.
I just had my surgery on Monday, the 9th of February. They took out my thyroid due to cancer. I'm now on cytemel(I have the bottle upstairs, I probably misspelled it). I take it two times a day. I spent the most of the day throwing up. I now feel better, and I actually have kept down my food. I will take the other cytemel later, so hopefully it will stay down. I will see my ENT next week on Wednesday for a follow-up and then the endocrinologist. I have been told I will need RAI in a few weeks. How did that go for everyone?
Hey Open the Door - glad to hear you're on the other side of surgery. Had a TT March of 08 for papillary cancer (stage 3) and am being followed by an endo. As Reece said, it is most common to be followed by an endo for thyroid cancer vs an oncologist.
I'm actually being followed up by BOTH an endo and oncologist for my thyroid cancer. I think that's partly because it was stage 3 and in lymph nodes, and because it was so "unusual" as they put it. It was throughout the entire thyroid, not just contained in tumors. There was basically NO normal thyroid tissue. Anyway, it's nice to consult with both of them. They usually agree on everything, but once they know all the cancer is gone, I will probably just stick w/ the endo.
As for RAI, I had a double dose and it's really not too bad. Sore throat, feeling bad because you're hypo again, but you start to feel better about day 3. It's all uphill from there.
I am now taking Cytomel 25MCG two times a day. I take one at around 8 a.m. and then one at 20:00 (12 hours later). I have been taking Viactiv(calcium supplement) twice a day. I try to take it 4 hours after my cytomel in the a.m. because of the absorption process.
I have been feeling some tingling in my feet, and headaches. I have been constipated which I never, never had in my life. I still think it is from the anaesthesia, and the Percocet, but it has been a few days. I last took percocet on Wednesday, the 11th of Feb. but I threw it up. I will try to eat fruit today, and move a bit more. I know it takes time to adjust to things. Is it normal to just be on cytomel after a total thyroidectomy? I will probably have blood drawn next week to see what my levels are. How often does a person go in to have blood drawn? I know I have alot of questions, and I know there will be so many more. I am normally a very, very active person. I have been feeling tired, but I'm still keeping active. I seem a bit calm these days. My moods seem to change a bit but I am trying to keep calm, and not make big stinks out of things. I am an exercise guru, and I know that I can't do this now.
Thanks everyone. The reason I am asking is I am seeing an Oncologist Gynecologist for my Bowen's disease and Squamous cell cancer on 3/4. The Bowen's can appear in the thyroid. hmmmm....makes me wonder about my thyroid nodules. Squamous in the thyroid is not common but can happen.
So since I am seeing an Oncology Group I wondered about them checking it out.
I love my Endo and he has been following me for my nodules but now that this Bowen's has appeared I am wondering if I should have the regular Oncologist check me out. Since I have a Bowen's where the sun does not shine it can mean I have other Squamous cancer internally elsewhere. I have been learning alot. It is different than a regular skin cancer. It is considered internal.
Thanks so much for all thoughts and ideas........Oleander
Oleander, I say get as many people you can in your boat! Hopefully your endo and onco can work out the Bowen's cancer together. That is fascinating that it's a skin cancer but considered internal. Applause for learning all you can and staying positive! PLEASE keep us updated on your progress. Big hugs!
Open the door, Viactive might not be enough calcium. I had calcium deficiency w/ my TT and they prescribed Calcitrol. Are you on that? And yes, I was TERRIBLY constipated for almost two weeks (tho I was in the hospital for half of that). It sounds silly but the ONLY thing that "got things moving" was coffee mixed with a hot chocolate packet my nurse found. I tried walking, prune juice, laxatives....one cuppa joe and I had a BM w/in 30 min. Who knows, it could work for you! Kudos for trying to stay calm and giving your body a rest. It's hard to be stationary when you're used to being up and around, but your body will thank you if you take it easy.
Hey Desert Rose and ALL !!!! Good to hear from you......
I have to say my journey through Thyroidville has well prepared me for Planet GyneCancer. I have been through Bootcamp on this board already so I am ready !!! I have spent the last 2 1/2 years with the smartest people here.
Just so everyone knows Gynecologist and Onc Gyne's are just as uneducated as some of our Endos and Docs we have encountered on here. GEEZZZZZ
It is the same crap. We have to be our own Advocates.
The biggest problem was finding others with this cancer. There is very little support and no one wants to talk about cancer "down there". And much misinformation. There is so much written that makes women feel ashamed about it. Some sites list causes as "multiple sex partners", ciggarrette smoking and much on the HPV virus. Which may contribute to some cases but you can see why some will not come forward and talk.......really terrible. Some guilt , shame and embarrassment. Then there is the disfigurement down there from surgery and radiation that no one wants to talk about. It is really heartbreaking. Delayed treatment and crappy care.
So it has been an education for me.
Finding a good Doctor is key. I think I have finally found a support group now.
I have bragged about us on this thyroid board. How smart and active it is. And have found some nice people on the Skin Cancer and Gyne Cancer Boards here on Healthboards.
I will discuss my thyroid issues with this Gyne Onc 3/4 and see what he has to say if anything.......I will let you know..... I am due for my thyroid ultra sounds and labs anyway. I understand I will have to have a PET and CT Scan so maybe that will tell me something too. My Endo who I love is with me every step of the way on this....very supportive and available.
Thanks and Happy Valentine's Day to all....................Oleander
Desert Rose, I laughed when I saw you drink coffee with a packet of hot chocolate. My morning coffee ritual is coffee with a tbsp. of plain cocoa mixed in, a little cafe mocha. It fills my tummy and does the job.
I'm 47 now but didn't start drinking coffee seriously until I was around 40. I have always liked coffee but I live in a hot humid climate and a hot drink in the AM was the last thing I needed. I then noticed how much coffee helped with the bowels. I then decided to experiment and add a tbsp. of plain cocoa, which is a source of fiber. I am telling you, it keeps my bowels regular and the added cocoa keeps me filled up until lunch (I am not a breakfast eater). It seems like only my concoction does the trick, not something like a Starbucks (not a fan anyway...too strong for my taste). I'm not sure what my bowels would be like if this wasn't my morning ritual.
I will see my ENT tomorrow, and they will remove the steri-strips from my neck. Maybe they can prescribe me the calcium since everything is so darn expensive. I blew up alot yesterday. Is it normal to get really ****** after such a surgery. I PMS really bad, and I think it was more intensified yesterday. I am taking cytomel twice a day, and that is it. Is that normal for now? Tomorrow I'll talk to the doctor and ask lots of questions. They will give me RAI in a few weeks from my Endo. They usually take you off the cytomel before the RAI, right??? They do this for two weeks before the RAI, right???? AFter the treatment, they put you on a different med, right???? I hope someone can answer this before I see the doctor, my ENT. Are there other questions that I should be asking?
Last edited by open_the_door; 02-17-2009 at 08:54 PM.
Open the door, yes, they usually take you off of thyroid meds about 2 weeks before the RAI. Be SURE you follow a low iodine diet beforehand, and do NOT take multi-vitamins that have iodine in them. I'm not sure what they'll put you on after the RAI, but generally I think it's more than just cytomel. I would search old threads for RAI, there should be a wealth of info in them.
Sparkie, haha, I actually LOVE Starbucks coffee. The white chocolate mocha is my fave I have always loved the taste of chocolate and coffee, even in ice cream treats, but have not ever had this much to drink so consistently. I've been having about one every other day since December. While I love it, my naturopath sister worries for me because it's a stimulant and might stimulate cancer cells (I'm still not cancer free, yet). Besides, it really is better for my body to not have it. Last night I was up until 3:00 with anxiety, and I think it's because of the large mocha I had at 4:00.