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Geri is the thyroid cancer specialist nurse on the Macmillan Support Line.
She checks this group and responds to medical or factual questions where members could benefit from an expert answer. You can also post questions specifically for her - she'll aim to reply within three working days.
Im new to the forum and after a very confusing and unimaginable rollercoaster of a few weeks I am now in waiting for treatment for Thyroid cancer. Iv had a thyroidectomy and left neck dissection which discovered a tumour on the left throid lobe, a tumour in one lymph node and cells 10 out of 82 glands which had been removed.
Knowing all the medical details of what has happened to me I think covers some of the severity of whats happening and the future that lies ahead for me, and the feeling that I am too young for this.
This feeling of being too young has also been supported by a variety of people I have spoken to, one who today when I asked for information seemed extremely shocked when she asked 'who has the condition' and I simply replied 'me' and in disblieve she asked whether I had been diagnosed I would like to have given her a more smart answer but politely replied.
This diagnoses comes at an unbelieveable time too as my mum is in her fourth cycle of chemotherapy for ovarian cancer and although we are extremely close already this diagnoses has made an even stronger bond between us, but I would just like to know whether there are any other families out there in the same predicament as ours?
Once again relating back to the woman in disbelief I simply asked her about the link of cancer in families in which I was bombarded with her knowledge and the reply seemed that my question was some how obsured because they were two different cancers.
Well I hope this first post is ok I feel better now I have shared a little of my story.
Good for you Kimbers, and certainly TC's can affect young women (papillary being the usual tumour), so don't panic about the age issue. I'm a 49 year old man and got a papillary & a follicular(usually affecting women same age as I). Thyroid cancer is rare but very treatable, and there are many friendly people in this group who will give you lots of support and friendship. Mind you, you seem well up on the info re the hystology of your post op. Most of us here have had TT's, did you? - and we all went through RAI, which I imagine you are being lined up for if you had the thyroid out?
I'm very sorry to hear your mum has ovarian cancer which I know can be difficult. I have a friend here who has battled/worked with the same branch of the 'cancer family' and i would hasten to say in a way we are all part of that family now. But we will overcome, and so you will. TC sufferers have amongst the best and most effective treatments. Yeah! Oliver.
A lot of thyroid cancer sufferers are young - I'm guessing from your user name that you're 24 or 25. Some are in their teens. It's hard at any age but I think some of the younger people diagnosed with TC take it even worse than those of us who are older. I'm 46 - I still think I'm young!
The reaction you got is typical of the ignorance about TC. In the UK something like 2000 people a year get diagnosed, making ours one of the rarer cancers and most people know very little about it.
On the plus side, statistically if you are under 45 you have an almost zero chance of dying from TC in the next 20 years. I don't say your life won't be massively impacted by the cancer, just that you've got a fantastic prognosis.
Your mum's and your cancers are most likely just bad luck rather than a linked phenomenon. With Macmillan saying the 42% of us will get cancer, it's not unlikely that it crops up in families. If you both had breast cancer or both had thyroid cancer, then the links might be genetic (esp. the BC) but two different cancers are unlikely to be connected.
Welcome to the site and I hope you don't mind hanging out with a bunch of old fogies!
Hi, your story sound similar to mine, my mum had been diagnosed with breast cancer in November 05, she had her mastectomy, as she was recovering i was beginning to feel unwell, for 6 months i was back and forth to the GP office with septic throat. He sent for all manner of test, all of which came back normal, including the TFT. in the end i paid privately to go and see a ENT specialist, he just said yes we need to get the tonsils out. I went in the next week and had my tonsils out, 2 weeks later i was having pain when swallowing, i went back to the GP who gave me antibiotics he said it would be an infection form my tonsilectomy, after 5 days of taking them i was getting woprse, so i called the ENT specialist secretary and explained, i went to see him the day after, he was just feeling my neck when he said i think you have a lump in your thyroid, i was sent for an ultrasound scan followed by a FNA, the following week i got a call to say i needed to see the ENT. I went to his office and he told me the results had come back as suspicious, i was re admitted and had a TT in May 06 and was told i had thyroid cancer. This was followed by RAI in Aug 2006, i had been having 3 monthly check ups with bloods, i had a WBS 6 months after my initial one, and was never given one again, i was having my bloods done every 3 months and they were TSH 0.01 and my TG was undetectable, so i was told they had got everything. I had my usual routine check in October 09 the Oncologist felt around my neck as he always does and said no everything is fine see you in 6 months. In the November, i felt a lump in the right side of my neck, i went to the GP who sent me back to the Oncologist, i say the oncologist on Christmas eve in 2009 he told me the lump moves so i don't think it is anything sinister, but he sent me for an ultr sound, he said it wasn't urgent. The appointment camr through for the end of January, so i went for the scan, as i was being scanned, i was asked if i had only had a particial thyroidectomy, when i said no i had a TT and asked why, i was told there was tissue in the thyroid bed. He did a FNA on both the lump and the tissue in the thyroid bed, i was called 3 days later and asked to go into the office, i was told both had come back as the papillar cancer, i was sent for a MRI and CT, went back 2 weeks later to be told althought the MRI had not shown anything they did not suspect the CT had shown multi nodules in both lungs, i was sent for a huge dose of RAI in March 2010 went for the results of the WBS and was told there was no uptake, i was RAI resistant and they think i had been resistant in 2006 too. I had a right neck dissection in June 2010 followed by EBRT in September 2010.
Sorry for the long post, was getting carried away.
Nice to meet you. I was new to the forum under a week ago and I'm 31 ( is that young?!) sorry to hear what you are going through. It must be hard dealing with everything and being worried for your mum too. I had my TT 3 1/2 weeks ago and waiting for radioactive iodine.
Just wanted to say there are great wonderful and kind people on here who are happy to listen and share. If you want to be RAI buddies give me a shout :0)
Many hugs for you and everyone who is on the journey,
Yeah I had my TT three weeks ago today you wouldnt think it the scar is healing so well! Im just in waiting too for my RAI but by the sound of things it won't be anytime soon people seem to be having a long wait!
I have an appointment for another check up on tuesday but I think this is for the endocrinologist (what do they do?) I know its all linked to hormones and stuff but what else do they ask?
Another question to add to the pile are you having any trouble with your shoulder out of everything this hurts the most! I'v got reduced strength and control and if I do too much I know about it!! The doctor was a bit casual when he said oh it'll be fine in a few weeks!
Yeah I know the scar is amazing isn't it? We got new kittens a week after I came out of hospital and you'd almost think it was a really bad cat scratch. I have had all sorts of aches and pains. I did have shoulder pain but (and this may seem a bit random and gross) but i had problems with being able to burp properly! Which resulted in trapped wind in my chest which felt like shooting pains in my shoulder? Is that the type of pain you mean?
Otherwise I know when they take the thyroid out they have to wriggle you about a lot and stretch your neck excessively so I guess it could be an upshot of that, but i would say if it's causing you trouble get back to the doc so they can help with the pain?
I've not seen my endocrinologist since I was diagnosed, but I'm guessing it will just be a follow up for you? Have they put you on a drug called liothyronine? Maybe it's to check your dose is ok? Especially if you have to wait a while?
When you say about strength do you mean I general? I've not gone back to work yet. Quite tired and if I do (what i consider not much) like a bit of gentle housework I get really hot and weak.
I guess we have to remember we've been through a little bit 1) the shock of the diagnosis 2) major surgery 3) new drugs 4) for you the added worry of your mum
I don't know if that's of any help at all sweet, but feel free to ask if there's anything else,
Lucky enough I haven't had any trouble burping just a very snotty nose ha ha we're mingin'!! The pain in my shoulder is mostly muscle pain but when I try to reach for things or lift things I have to support it with my other hand as I start to shake and think I'l drop what Im holding. Im going to give it a few more days and see if it improves which it has a little, but I work with children and I really don't want it to be a long term thing as it might effect what I do. My voice isn't the same pitch either I went back into work today to visit and never realised how high pitched I speak to the children until I wanted to say something and it ended up a wisper!
Yea Im on Liothyronine, been really worn out today with it, I asked the doctor about keep flushing hot and he just said it's my body adjusting to the thyroid levels
When in work I asked how my pay would work out and because I havent been there very long well two years Im only entitled to two months full pay and two months half so I'm hoping the treatment gets a wiggle on, but I've looked though all the books that you get given but nothing seems to apply to me! I know this sounds bad but Im either not ill enough for financial support or earn too much I don't seem to fit in any brackets and I know money is probably the last thing to worry about but when you have bills to pay and no money to cover them it becomes another thing to a long list of worries :(
I have to say the smile of the day came from a lady who works in the setting but not with me, came and asked me how I was and said how well I looked and then finished the compliment with 'I was expecting you to look pale and really poorly' ha ha Oh thanks!!
Hi Kimber, I had the shoulder pain and still get it when i'm tired. Ask your gp about physio. I had this and acupuncture. This was a great help Its caused by the neck dissection to remove the lymph glands as there are so many nerves and muscles in this area. It does get easier and I hope you feel the difference soon
Flushing is a side effect of thyronine and is probably a sign that you are on too much. Sounds as if your doc (GP?) swept that one under the carpet!
Still on thyronine?...and still struggling with it? Me too. I've heard of people who pre-empt how much energy they are going to be using in the day and dose accordingly - another 5 mcgs here or there, or maybe more in your case.
I've been feeling pretty well and normal on T3 for the last month (35 mcgs), but I still have days where I get a thumping heart and weak legs and it's difficult to assess why. I've read that it's crucial to have an efficient adrenal system readily producing enough cortisol to enable the tissues to use the available T3 effectively. If your adrenals are even a little under par then the T3 (or T4) can build up unused in the body and become toxic - which could very well be what happened to me on thyroxine (nobody has given me an explanation, but that fits my experience). I've decided, after reading up, to try splitting the dose still further (5 mcg every couple of hours) because apparantly that helps the available cortisol to cope with the strain.
Still on thyronine?..
Still on thyronine?..
Yes afraid so, feeling washed up lately, no contact from Onc yet, I hav'nt even had an endo appointment, apparently its delt with by oncology(???)
so just sit back, take the T3 until I keel over probably
I thought that normally you are given T4 to come away from hospital with.
Exactly- my shortest post ever
j4solwayI thought that normally you are given T4 to come away from hospital with.
Yes, so did I !
Ive talked to who ever will listen till im blue in the face, and been summarily fobbed off by everyone
I was that miffed , today I called the onc secretary and explained it was 'some time' since they'd bothered to actually talk with me, guess what? a 'magic' appointment appeared. I really hacked off with the lack of follow-up and the lack of continuity in this. I will give him an earful when I have my appointment so I will keep you all posted on how it pans out. Not till next month so its T3 for another week or two.
I never heard anything like it Dean. I was given the programme before I went to surgery, and straight on 200mcg Thyroxine straight after op(next day I think although I was deep in Linda Blair country- maybe you have mini head symbol for her!). Do you get access to an SCN at your hospital, as it might help to give him/her a version of your troubles. They do appear to make things happen if your getting stonewalled. One of the side effects of being on the cancer network org is seeing a Cancer Centre working well, and that gives me lots of confidence as a patient(or user which always sounds a bit weird to me). Ol.
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