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Medical Forum / Diseases and Disorders / Cancer / February 2006After the surgery
Can anyone tell me what to expect now. I had a thyroidectomy done last month, was told that I am now cancer free (I had Papillary carcinoma) and the advice my doctor gave me was "live". Seeing as I no longer have a thyroid, what are the chances of this comming back? Please I feel truly alone. This has all happened so fast. Anyones input would be great. Thanks > Can anyone tell me what to expect now. I had a thyroidectomy done last > month, was told that I am now cancer free (I had Papillary carcinoma) > and the advice my doctor gave me was "live". Seeing as I no longer > have a thyroid, what are the chances of this comming back? Please I > feel truly alone. This has all happened so fast. Anyones input would > be great. Hello Stephanie, As far as I know, often, surgical removal is all that is required. I think, if clear margins weren't obtained or there was a suspicion of lymph node involvement, RAI (radioactive iodine therapy) is suggested. Otherwise, lifelong thyroxine therapy is essential. The thyroxine replaces what the thyroid should produce. In addition, slightly higher doses than are necessary for replacement alone appears to reduce the risk of tumour recurrence. In other words, the TSH should be kept as low as possible, by means of the thyroxine dose to ensure a low risk of recurrence. Then you get on with your life and every 6 - 12 months the patient returns to his/her endocrinologist for blood tests to determine if the dose of daily thyroid hormone is correct and to make sure (questions to patient and physical exam) that the thyroid tumor is not coming back. Based on what I've seen here by one patient, one gets used to watching out for signs of trouble and reporting it and eventually, if no problems, the intervals of recurrence rechecks probably space out even further, with possibly only the primary care physician making sure the TSH levels are kept within the optimal low range. Watch for Steph to correct me or reply to you, if he feels differently. He's the expert here. If he does not reply, it means he concurs. Best wishes . May you remain cancer free for the rest of your life. J Thanks for responding, it's nice to know that there is someone out there I can talk to. Steph > Thanks for responding, it's nice to know that there is someone out > there I can talk to. > Steph Hello Stephanie, I'm sorry to bother you; you seem like such a nice person, but would it be possible, if you're going to continue to post your messages here, to please change your yahoo "outgoing name"? In my Yahoo, it's under "options", then "General Preferences". We can't have two persons with the same (screen) name here; it would be too confusing for readers of this newsgroup. Steph (radiation oncologist) has been here for many years, so he gets first dibs. In other words, I won't be asking him to change his screen name. Please? I searched archives and there already is a StephA, so if you can think of a word or name to add to your "Steph" (or a combo of letters /numbers) that would make your screen name distinctive without upsetting or confusing those with whom you email, it would be very much appreciated here.. There doesn't seem to already be a StephXYZ or StephA1 Or maybe if you use Stephanie for your screen name? (unless that causes name confliicts in your internet entourage) I hope you can work it, so each of you is distinctive, on this newsgroup. Meantime, BJ may be around to invite you to a thyroid cancer list. Steph and I often encourage those who are cured by surgery to get on with their lives; else cancer recurrence "paranoia" can set in, by hanging out in this newsgroup. They often do move on and come back, during the :roll calls" to let us know how they're doing. That works as well, because I rarely forget a poster and am usually pleased to hear from preivous posters again. It's also encouraging for the lurkers to know that there are treatment successes, so I'll leave that up to you. If you decide to stay, though, please "screen name change". Thank you. J > Can anyone tell me what to expect now. I had a thyroidectomy done last > month, was told that I am now cancer free (I had Papillary carcinoma) [quoted text clipped - 6 lines] > > Meantime, BJ may be around to invite you to a thyroid cancer list. Sorry for lollygagging, been off getting injured, repaired, resting up, deciding if I'm more hurt than thought, etc. -- and watching the Olympics (thank goodness for DVR's & fast forward buttons!). The web site is www.thyca.org The main email support group is at http://health.groups.yahoo.com/group/Thyca/ with >4000 members; it's *very* active. And it's rare that a "new" question gets asked. Steph -- if you don't mind, would you share more of your history -- such as -- size of nodule(s), followup plans, medication maintenance plans/goals, etc. Are you seeing an endo with a lot of experience treating thyroid cancer? If you have had no further treatment beyond surgery, what was the basis for that decision? e.g. (why) were you deemed low risk, no need for RAI, etc. Thyroid cancer does have a high "cure" rate, the most common forms have excellent prognosis -- but that kindof assumes good & adequate surgery & treatment. Also, in case you are worrying about this aspect, plenty of women have gone on to have babies after thyca (but there are some special considerations as to timing and hormone monitoring during pregnancy). BTW, thyca *can* recur decades later, so you need to have some kind of regular monitoring. Some people need more than one radioactive iodine treatment in the first go-round (6-12 months apart), then never have any further problems; others have treatment, then no probs, then have recurrence & more surgery &/or RAI treatment years later (& no further probs). I had one treatment & have had no indication of any recurrence or mets after 5 years -- but I still have regular checks and will have a scan this year. If you are anywhere near a "live" local support group, you may find it very informative & comforting to go. And there are several spring workshops planned -- one-day events with several expert speakers at each. These, and the annual 3-day conference (this year in Orlando, end of October), are highly recommended as great places to get information & support & meet lots of fellow-travelers (aka "cut-throats"). Best wishes. bj Hi bj thanks for writing. Here's my history. Last December my family doctor found a bump on my thyroid. He sent me to an endocronologist who sent me to have some tests. (Ultrasound, x-rays etc...) My endocronologist told me the results showed that I had a multi-nodular goiter. He explained that in some cases taking synthroid shrinks the nodules, so that's what I did. I started taking a small dose, 0.025, and then the nodules actually started to grow. You could see it sticking out of my neck. With that my endocronologist decided it would be best to have the thyroid removed. I saw a surgeon, and he said he would only do a partial thyroidectomy, and schedule a second surgery if needed. So far 3 doctors, all with different opinions. No biopsy has been done. The day of the surgery is getting close and I start to get nervous. I see my family doctor and let him know what's going on. He hasn't been informed on anything so he calls the hospital and gets my files, calls me in and explains that 4 cold nodules have been found, and that in his opinion there was a slight possibility of cancer. This is the first time the word cancer has been used. 2 weeks befor the surgery. I call and make another appointment with my endocronologist to discuss this and he actually got angry with me. Saying that this is very routine for him, and the chances of cancer are so small, and even if it is it is very treatable. Sure enough the durring the surgery my surgeon decided on a full thyroidectomy, and it ended up that 3 tumors were not cancerous. The last tumor to be found was inside the thyroid, very small, only 5mm, and that tumor was cancer. Pappilary carcinoma is what I was told. I saw my surgeon a few weeks after the surgery and he said it was up to my endocronologist to decide on my treatment. Well, my endocronologist cancelled my appointment so I went to my family doctor once again. I am now waiting to see a new endocronologist, but my appointment is in April. My family doctor said that was fine because looking at my results, he said that the tumor looks like it has not spread. Anyways, you can see why I came to this web site. I'm sure I'm fine, but at the same time I would like to know what's going on. What's routine for someone is completly new to another. Thanks for listening, Stephxyz >Hi bj thanks for writing. Here's my history. Last December my family >doctor found a bump on my thyroid. He sent me to an endocronologist [quoted text clipped - 31 lines] >another. Thanks for listening, >Stephxyz Cold Nodules can be cancerous, but frankly 'Hot' nodules are far more likely to be cancerous. The difference is whether they take up the Radioactive iodine used to image the gland. A cold nodule does not take up the Iodine, and consequently is probably NOT thyroid tissue. The bottom line is that there no reason to be overly concerned about 'cold' nodules. 'Hot' nodules there is good reason to be concerned over. >>Hi bj thanks for writing. Here's my history. Last December my family >>doctor found a bump on my thyroid. He sent me to an endocronologist [quoted text clipped - 35 lines] > Radioactive iodine used to image the gland. A cold nodule does not > take up the Iodine, and consequently is probably NOT thyroid tissue. Matt, your slip is showing. Cold nodules are likely to be malignant, not hot ones. > The bottom line is that there no reason to be overly concerned about > 'cold' nodules. 'Hot' nodules there is good reason to be concerned > over. You need to get a bit of a grip before posting "advice" > You need to get a bit of a grip before posting "advice" Looks like I blew it as well and she should be having RAI.. But then again, the BC Cancer Agency (web page) said that surgery alone is often all that is needed. I thought that was why the endocrinologist cancelled her post-op appointment. The mystery continues on that, then. J >> You need to get a bit of a grip before posting "advice" > [quoted text clipped - 7 lines] > > J For a very small well diff ca, the iodine is controversial. It's just our policy to do it. It was the nonsense about hot and cold nodules which I objected to > Hi bj thanks for writing. Here's my history. Last December my family > doctor found a bump on my thyroid. He sent me to an endocronologist [quoted text clipped - 31 lines] > another. Thanks for listening, > Stephxyz A 5mm nodule of well diff thyroid cancer has a 100% 10 year survival rate. We normally advise total thyroidectomy plus radioiodine, but the prognosis is almost as good as someone who has never had cancer Hi Steph, Thanks for taking the time to write back. Can you please explain the 10 year survival rate. Does that mean that after 10 years, if the cancer hasn't come back, it most probably never will? > Hi Steph, > Thanks for taking the time to write back. Can you please explain the > 10 year survival rate. Does that mean that after 10 years, if the > cancer hasn't come back, it most probably never will? Correct. Occasionally thyroid cancer can recur many years later, but the chances of that happening for you are very slight indeed. The cure rate for small well-diff thyroid ca in women is close to 100% Thank you everyone for all the information. I will see my new endocronologist in April. I will let you know what he says. Thanks again for listening xo Good Morning, Sorry to have caused any confussion with the name. I'm not to good with a computer, so I THINK I have changed my name. Anyways, thanks for listening, your right on the paranoia part. Everything has happened so fast. I was really looking for a thyroid cancer support group. I know I'm better, I just wanted to talk to someone who has gone through what I have. So, thanks again Stephxyz(I hope) > Sorry to have caused any confussion with the name. I'm not to good > with a computer, so I THINK I have changed my name. Anyways, thanks > for listening, your right on the paranoia part. Everything has > happened so fast. I was really looking for a thyroid cancer support > group. I know I'm better, I just wanted to talk to someone who has > gone through what I have. So, thanks again Good morning, Stephanie That worked very well. :) Thank you for changing your screen name. Based on your further clarification and Matt's replly sounds like there wasn't cancer. (but I'm not an expert on that). I would ask for a copy of the post-op pathology report, to see what it says. There's also alt.support.thyroid, since there's not a lot of thyroid patients here. They'll likely tell you the same, about getting the final pathology report. Best wishes. J |
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