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Mumsnet Discussions: General health : Cancer of the Thyroid, and it has spread. Any survivors here? (50 messages)
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Contact the poster See this person's profile Contact mumsnet about this post By QuintessentialShadows on Wed 14-May-08 16:27:42
Just had a phonecall from my sister. She went for a check up as she has had some thyroid problems. Turns out she has cancer, and it has spread. She was on the bus and on the way home, so couldnt talk much. She was half hysterical, what is usually the prognosis? The tumours in her neck are many, and large as grapes, and in clusters, much like grapes. sad

God I wish she was here and not in Spain, and I would just hold her close. sad
Contact the poster See this person's profile Contact mumsnet about this post By Martianbishop on Wed 14-May-08 16:30:51
I can't help with specifics I'm afrain.

Don't start googling, it is seldom helpful.

If you want online information look at the macmillan and cancer bacup sites, as these give good, level headed information.

Remember that the stats are retropectivem, and that survival rates now tend to be higher as treatments have improved. Whatever the outcome everyone is an individual. They gave dh 3-6 months in Dec 2006. He is still with us.

Hugs to you and I hope that things go well for your sister
Contact the poster See this person's profile Contact mumsnet about this post By QuintessentialShadows on Wed 14-May-08 16:37:21
I have read some of your posts MP, cancer is not so unknown to our family, as my mum has a rare form of bone marrow cancer, had had the last 15 years (though it is now starting to get progressive). But does your dh have cancer of the thyroid (or did it start that way?)

Actually, you mentioning MacMillan is scaring me shitless, as I thought they were for the final stages....
Contact the poster See this person's profile Contact mumsnet about this post By QuintessentialShadows on Wed 14-May-08 16:38:29
My sister lives on the Canary Islands though, not sure if she will receive great treatment there. She had a biopsy 2 years ago and was diagnosed with goitre, but no cancer.
Contact the poster See this person's profile Contact mumsnet about this post By cmotdibbler on Wed 14-May-08 16:40:26
Thyroid cancer is really treatable, and the radioiodine treatment is pretty straightforward (small drink, then sit around in hospital for a few days whilst the tumour takes up the radioactive iodine)
Contact the poster See this person's profile Contact mumsnet about this post By Martianbishop on Wed 14-May-08 16:41:11
Oh no, dh has pancreatic cancer, I really don't know anything about thyroid cancers.

Macmillan will help in the late stages but they also provide information for all stages of cancer, and it was in this latter capacity that I was thinking for your ds. Sorry to have scared you!
Contact the poster See this person's profile Contact mumsnet about this post By QuintessentialShadows on Wed 14-May-08 17:02:53
Thanks MP, I will go have a look at their site.

And thanks for reassurance cmotdibbler.
Contact the poster See this person's profile Contact mumsnet about this post By bundle on Wed 14-May-08 17:04:13
do you know what kind of thyroid cancer?
Contact the poster Contact mumsnet about this post By fruitcorner on Wed 14-May-08 17:05:35
My friend had thyroid cancer last year and had her thyroid removed and radioiodine treatment. She is fine now although she will be monitored each year and must be on tablets forever as a result of her thyroid being removed. So don't panic presumably your sister will now have a further consultation at which she can ask some more questions?
Contact the poster See this person's profile Contact mumsnet about this post By bundle on Wed 14-May-08 18:11:11
Contact the poster Contact mumsnet about this post By sagacious on Wed 14-May-08 18:19:19
Tenerife has excellent hospital facilities IIRC (my parents live there) they boast (constantly) about how much better they are compared to the English ones.
HTH
Contact the poster See this person's profile Contact mumsnet about this post By Desiderata on Wed 14-May-08 18:31:27
Blimey, Quint sad

I've no advice for you, but I hope you're OK. It's so difficult when you're far away.

Apart from the phone, can you email her regularly?
Contact the poster See this person's profile Contact mumsnet about this post By QuintessentialShadows on Wed 14-May-08 21:29:59
I just came off the phone with her. She is trying to be rational about it, a trained scientist by heart and mind. She is very scared, a single mum, and her dd is of course beside herself.

We will have to work out what is better, for her to stay in Spain and get treatment, or for her to come home where she has the support of her family. In spain she has nobody, and will need to hire a mothers help to be with her around the time of the op and following treatment, and it will mean she cannot come home with her dd for summer holidays. She has no GP here, and is not a member of the national health service, so she may not even be eligible for treatment here. I am going to get an appointment with our family doctor to talk to him about the options, if she can get treatment here, how long waiting list etc....

I just cant believe this is happening. She has so much other crap to deal with in her life, she has concluded dying might even be better for everybody concerned. sad Now that is not the best attitude to take to battle!
Contact the poster Contact mumsnet about this post By ssd on Wed 14-May-08 21:33:02
I'm so sorry quint, for you and your sister and her child

sad

just sending all my very best wishes

ssd x x x
Contact the poster See this person's profile Contact mumsnet about this post By lilyloo on Wed 14-May-08 21:34:05
so sorry sad
Contact the poster See this person's profile Contact mumsnet about this post By cmotdibbler on Wed 14-May-08 21:44:12
If she is a UK citizen, with a UK passport, she can get treatment here on the NHS. Virtually no waiting list for cancer treatments - where (roughly) would she be moving back to ? I can try and find out exactly what things are like in that area if that would help

In her circumstances, I'd think that it would be better for her to have as much support as possible.
Contact the poster See this person's profile Contact mumsnet about this post By QuintessentialShadows on Wed 14-May-08 21:49:08
We are in Norway. The national health has fantastic looking facilities, with steel and glass and marble floor, arts on the walls. But what does that matter when there are not enough nurses, not enough doctors, and waiting lists are normally from 6 months and up...
Contact the poster See this person's profile Contact mumsnet about this post By QuintessentialShadows on Wed 14-May-08 21:49:09
We are in Norway. The national health has fantastic looking facilities, with steel and glass and marble floor, arts on the walls. But what does that matter when there are not enough nurses, not enough doctors, and waiting lists are normally from 6 months and up...
Contact the poster See this person's profile Contact mumsnet about this post By cmotdibbler on Wed 14-May-08 22:01:58
I forgot you were in Norway. And its one of the few european countries that I don't have good contacts for cancer treatment too, although could ask some of my Swedish radiotherapy physicist friends what the cancer lists are like.
Contact the poster See this person's profile Contact mumsnet about this post By QuintessentialShadows on Wed 14-May-08 22:24:25
Thanks cmotdibbler smile
Contact the poster Contact mumsnet about this post By neolara on Wed 14-May-08 23:00:20
My cousin had thyroid cancer a year ago. It was completely removed and now she is fit and healthy, although she will have to take thyroxin for the rest of her life. I really hope your sister will be as easily treated.

At the time, I remember reading that if you were going to get a cancer, it was a "good" one to get, because it can be dealt with relatively easily and because the prognosis is generally good.
Contact the poster See this person's profile Contact mumsnet about this post By QuintessentialShadows on Thu 15-May-08 08:17:58
Thanks neolara. I will make sure to tell sister.
Contact the poster See this person's profile Contact mumsnet about this post By PortAndLemon on Thu 15-May-08 08:50:59
There are four types of thyroid cancer. I dn't remember the names, but basically one is a doddle to treat, rarely any long-term consequences, one is a bit nastier but normally responds well to treatment, one is quite a bit nastier and more aggressive and one is really very nasty (note use of brilliant technical language there).

My brother has recovered fine from thyroid cancer, but he had the second type. If your friend's has spead then there's probably a good chance that she has one of the nastier forms (which are rarer). Her chances, and what to do, will probably depend on which form it is and how far it's spread.
Contact the poster See this person's profile Contact mumsnet about this post By PortAndLemon on Thu 15-May-08 08:52:16
sister, sorry, not friend blush.
Contact the poster See this person's profile Contact mumsnet about this post By QuintessentialShadows on Thu 15-May-08 08:59:16
Thanks Portandlemon (good to hear your brother is doing good), she has her next meeting with her consultant on the 5th of the next month, when the result of some further tests are due. I guess we will be on tenterhooks till then. I read there is one form that spreads to the lungs... keeping the fingers crossed.
Contact the poster See this person's profile Contact mumsnet about this post By onlyjoking on Thu 15-May-08 09:05:19
so sorry to read this, afraid i know nothing about this kind of cance, i know a bit about radio and chemo if i can be of help.
Contact the poster Contact mumsnet about this post By MummyDoIt on Thu 15-May-08 09:10:40
So sorry to hear this, Quint. I'm afraid I don't know about your sister's specific cancer but DH has oesophageal cancer so I know quite a lot about chemo and radiotherapy. Plus I know an AWFUL lot about worrying about a loved one with cancer! Just shout if you want to know anything or just want a shoulder to cry on.
Contact the poster See this person's profile Contact mumsnet about this post By QuintessentialShadows on Thu 15-May-08 09:12:11
Yes OJ, I guess you do. sad I might pick your brains on a later stage, though I hope I wont have to. How is Steve today? I read the other thread so know his breathing was not great last night.
Contact the poster See this person's profile Contact mumsnet about this post By QuintessentialShadows on Thu 15-May-08 09:15:56
Thanks MummyDoit. We have been living with my mums cancer for nearly 12 years now, I had forgotten how worrying it is the beginning when you have no information. Hopefully it will be like with my mum, where chemo is keeping it in check and she can have a relatively normal life.

You, Oj and and MB are truly inspirational with your courage. You have so much on your plates, yet you still find time to be there for others.
Contact the poster See this person's profile Contact mumsnet about this post By bristols on Thu 15-May-08 11:25:05
I was diagnosed with follicular thyroid cancer in 2003, at the age of 25. I had surgery to remove the thyroid gland and then radioactive iodine treatment to see off any remaining cells. Thankfully there was no spread.

Since then I have had two children and am doing very well. As someone else said, it it very treatable indeed, especially the papilliary and follicular types.

Feel free to ask me anything and I'll do my best to answer. It might be worth looking at www.thyca.org/ but only after you have some more information about which type of cancer she has, how it has spread etc etc.

I can totally understand how she feels. It's such a frightening prospect. If she'd like to get in touch with me, let me know.

Thinking of you all x
Contact the poster See this person's profile Contact mumsnet about this post By anorak on Thu 15-May-08 11:47:01
My mother didn't have cancer, but she had her entire thyroid gland removed for thyroid disease and lived perfectly well for decades without it. It's an expendable organ.
Contact the poster Contact mumsnet about this post By Offa on Thu 15-May-08 12:02:38
I had treatment for papillary (follicular variant) thyroid cancer 2 years ago. I had the complete thyroid removed and followed by radioactive iodine treatment to kill any remaining cells. It worked very well and I am fit and well with just regular checkups to keep an eye on things.

I would recommend the British Thyroid Foundation website for good, clear patient information when she is ready.

Best wishes
Contact the poster See this person's profile Contact mumsnet about this post By QuintessentialShadows on Thu 15-May-08 21:20:52
Thanks guys, and glad to hear you are doing well. I shall check out those sites.

My sister has been craving fish her entire adult life. Actually, she just thought about it, since she took a summer stroll in the rain, which contained radiation from Chernobyl. She now thinks there is a link. Have any of you heard about cancer after exposure to radioactive radiation?
Contact the poster Contact mumsnet about this post By NurkMagiggy on Thu 15-May-08 21:23:26
Yes Quint, lots of children in Russia developed it after the accident. sad
Contact the poster See this person's profile Contact mumsnet about this post By fakeblonde on Thu 15-May-08 21:30:21
Sorry haven`t read all of it but just wanted to say that from my limited knowledge of thyroid cancer the prognosis is usually very good.
Contact the poster See this person's profile Contact mumsnet about this post By QuintessentialShadows on Thu 15-May-08 21:31:28
Two years after Chernobyl my sister developed her first cancerous mole. She has had 4 taken in total. And now this. She is worried it is just the tip of the iceberg. But, she is a worrier. sad
Contact the poster Contact mumsnet about this post By NurkMagiggy on Thu 15-May-08 21:41:17
I am ignorant about the real facts but I believe there were many cases of thyroid cancer following it because it is the organ that processes things coming into the body, ie it's kind of front line defence, so that's where the radioactive buck stopped in many people.
I think...
Contact the poster Contact mumsnet about this post By NurkMagiggy on Thu 15-May-08 21:42:48
Contact the poster See this person's profile Contact mumsnet about this post By QuintessentialShadows on Thu 15-May-08 21:43:18
Does not surprise me. The border to Russia has the highest percentage of thyroid cancer in Norway, due to the nuclear testing in the Kola Peninsula. angry
Contact the poster See this person's profile Contact mumsnet about this post By TinaStratford on Fri 16-May-08 07:26:47
Was diagnosed 2 years ago,had surgery and 3 treatments.The treatments in themselves are OK it's only the isolation thats a problem.
Thyroid cancer is called the god cancer, if thats possible,as it has a great prognosis
Contact the poster See this person's profile Contact mumsnet about this post By QuintessentialShadows on Fri 16-May-08 07:41:01
Isolation?
Contact the poster See this person's profile Contact mumsnet about this post By WanderingTrolley on Fri 16-May-08 07:52:05
I believe you have to be in isolation for a few days following radioactive iodine treatment. As I understand it, you're in a room in a hospital for a few days, with a tv and a huge pile of magazines, waving to people through a window.

My friend had thyroid cancer and radioactive iodine treatment about ten years ago and been fine ever since. She has no thyroid gland and is on thyroxine, but never had any problems. She's had two children in that time.

Hope your sister finds out exactly where she stands very soon. I think knowing a bit but not all is a horrible situation to be in.
Contact the poster See this person's profile Contact mumsnet about this post By QuintessentialShadows on Fri 16-May-08 08:08:13
Thanks. I think she will hate isolation. As a single mum living abroad, I think then it might be better if she comes home, for who will look after her dd while she is in isolation?
Contact the poster Contact mumsnet about this post By Offa on Fri 16-May-08 10:08:51
The period of time you have to be in isolation is variable depending on your dose and on how quickly you get rid of the radioactivity. You have to drink a lot and shower often because it comes out in your urine and sweat. If you have very young children you are advised to stay away from them for a little longer to safeguard their health. I was out of hospital within 2-3 days and on my own at home for a few more days. Your sister will need someone to look after her daughter during that time.
Contact the poster See this person's profile Contact mumsnet about this post By QuintessentialShadows on Fri 16-May-08 10:53:38
Do you know if you get the radiotherapy right after the op, or is that spaced out a little?
Contact the poster See this person's profile Contact mumsnet about this post By TinaStratford on Fri 16-May-08 13:13:33
You are usually scehuled about 6-8weeks after.becasue you need to come off drugs and often do an iodine free diet for 2weeks before and also because they need to find space for you as there are v few rooms and only one or two can be done at a time.
I did wait about 12weeks for mine after my honeymoon though.Individual case I think, depends on spread,size,type,etc
Contact the poster Contact mumsnet about this post By Offa on Fri 16-May-08 14:40:35
My radiotherapy was nearly 3 months after surgery. I did find that there was a LOT of waiting in between treatments and waiting for results, so you have to be prepared for that too.
Contact the poster See this person's profile Contact mumsnet about this post By TinaStratford on Fri 16-May-08 22:49:42
I generally find they say,we'll retest in 3 months everytime I see thwm. I go private for it,completely by luck,so it's a bit easier to get treatment quicker.I think it depends on your local facilities
Contact the poster See this person's profile Contact mumsnet about this post By TinaStratford on Fri 16-May-08 22:53:29
You are given a piece of paper when you leave the hopsital which states the amount of time you have to be away from adults/children/public transport etc. From adults it's only a couple of days after release,for children up to 2weeks in some cases.The more water you drink and the more showers, the less time you are away from people as yo eliminate radioactiviy quicker.I was away from my son for a week all 3 times,I was v quick at getting rid of it due to my age and that I didnt sleep because I wanted to get out so drunk loads!
Contact the poster See this person's profile Contact mumsnet about this post By bristols on Sun 18-May-08 19:43:23
How's your sister doing, Q? And what about you?


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