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Thyroid cancer

  • 15-07-2019 3:50am
    #1
    Registered Users Posts: 488 ✭✭


    Hi,

    A little over a year ago my pregnant wife learned that there was a suspicion that she had a cancerous nodule growing on her Thyroid.

    Since then she has given birth to a beautiful girl and had a successful operation to remove the Thyroid which was confirmed to have cancerous cells. She also seems to have little issues with the replacement medication Eltroxin.

    After months of confusion over whether the local endocrinologist department sent a simple referral letter to St. Luke's to continue on to the next step of getting radio-iodine treatment she finally has an appointment this week with a consultant to discuss her options.

    I am trying to support her in the best way I can but I find I am having a real issue with getting my head around the use of radio-iodine treatment.

    My wife and I have two different concerns about it:

    - My wife is worried about the harm the radiation may have on our baby even after spending a week in isolation and an additional week away from the baby.
    - My main concern is articles suggesting at the very least radio-iodine treatment presents an increased risk of contracting a second primary malignancy somewhere else in the body at a future point.

    Sorry for reaching out here but we both feel we've been fobbed off in relation to these questions at the endocrinology department at our local hospital and I would like to get some advice on these concerns or know what other questions we should be asking at the appointment Thursday?


Comments

  • Moderators, Social & Fun Moderators Posts: 4,267 Mod ✭✭✭✭TherapyBoy


    Any (and I mean literally ANY) questions or queries you have about this treatment, write them down & bring them to the meeting with you. Go through them one by one & take your time. You probably will feel rushed or that the medical staff are being dismissive with you but explain your fears about the procedure & don’t leave until all your questions are answered. It can be overwhelming dealing with the information especially when it’s new or your first time in such a meeting so it can quite often be beneficial to record the meeting (on your phone for example) or ask for a nurse or other member of the medical staff to sit in on the meeting to help you digest the new information afterwards.

    Ask them directly about the risks to do with feeding/infant care/contact etc with young children. They’ll tell you exactly what’s safe & for how long to avoid contact. From reading about the treatment they advise limited contact (with everyone) for 2-3 days after, so leaving it a week would probably be safe enough. I’m unsure about the risks regarding feeding but they will be able to advise you on this directly themselves.

    Regarding the treatment causing a second primary malignancy somewhere else in the body I don’t believe this is true. With any form of malignant cancer, having it appear afterwards in another part of the body is always a major risk but I do not believe that any doctor would put forward any option that would increase this risk. From in excess of 30 years now dealing with all manor of doctors, radiotherapists, endocrinologists & medical staff to do with my own health problems the one consistant thing I could say about them is they do not take unnecessary risks with their patients healthcare, and are almost cowardly about stuff like this. They want you to stay alive & healthy as long as possible & will not propose any treatment which would put you at risk unnecessarily. If there is a risk associated with a particular type of treatment it’ll be either the one that is least risky compared to other treatments for the same illness/condition or the one that has the greatest chance of success. They won’t take unnecessary risks!

    Honestly, I know very little about this type of treatment or your wife’s condition, just my own dealings with medical people over the years. I’ve had brain surgery for recurring (benign) brain tumours 12 times & been through 2 courses of radiotherapy. They removed my pituitary gland in ‘95 & I’ve been taking eltroxin ever since without any significant problems.
    The best advise I can offer is writing down your questions, explain your fears and don’t leave the appointment without your questions being answered.

    Good luck! (and good health!!)


  • Registered Users Posts: 32,634 ✭✭✭✭Graces7


    Hi,

    A little over a year ago my pregnant wife learned that there was a suspicion that she had a cancerous nodule growing on her Thyroid.

    Since then she has given birth to a beautiful girl and had a successful operation to remove the Thyroid which was confirmed to have cancerous cells. She also seems to have little issues with the replacement medication Eltroxin.

    After months of confusion over whether the local endocrinologist department sent a simple referral letter to St. Luke's to continue on to the next step of getting radio-iodine treatment she finally has an appointment this week with a consultant to discuss her options.

    I am trying to support her in the best way I can but I find I am having a real issue with getting my head around the use of radio-iodine treatment.

    My wife and I have two different concerns about it:

    - My wife is worried about the harm the radiation may have on our baby even after spending a week in isolation and an additional week away from the baby.
    - My main concern is articles suggesting at the very least radio-iodine treatment presents an increased risk of contracting a second primary malignancy somewhere else in the body at a future point.

    Sorry for reaching out here but we both feel we've been fobbed off in relation to these questions at the endocrinology department at our local hospital and I would like to get some advice on these concerns or know what other questions we should be asking at the appointment Thursday?

    Op commiserations. Have you seen any of the online support groups there will be online for folk in the same situation? Have a google? You are not alone in this situation,
    Years ago I did this for a friend with thyroid problems and it helped .. just folk like you who need to understand and make decisions.


  • Registered Users Posts: 488 ✭✭the-island-man


    TherapyBoy wrote: »
    Any (and I mean literally ANY) questions or queries you have about this treatment, write them down & bring them to the meeting with you. Go through them one by one & take your time. You probably will feel rushed or that the medical staff are being dismissive with you but explain your fears about the procedure & don’t leave until all your questions are answered. It can be overwhelming dealing with the information especially when it’s new or your first time in such a meeting so it can quite often be beneficial to record the meeting (on your phone for example) or ask for a nurse or other member of the medical staff to sit in on the meeting to help you digest the new information afterwards.

    Ask them directly about the risks to do with feeding/infant care/contact etc with young children. They’ll tell you exactly what’s safe & for how long to avoid contact. From reading about the treatment they advise limited contact (with everyone) for 2-3 days after, so leaving it a week would probably be safe enough. I’m unsure about the risks regarding feeding but they will be able to advise you on this directly themselves.

    Regarding the treatment causing a second primary malignancy somewhere else in the body I don’t believe this is true. With any form of malignant cancer, having it appear afterwards in another part of the body is always a major risk but I do not believe that any doctor would put forward any option that would increase this risk. From in excess of 30 years now dealing with all manor of doctors, radiotherapists, endocrinologists & medical staff to do with my own health problems the one consistant thing I could say about them is they do not take unnecessary risks with their patients healthcare, and are almost cowardly about stuff like this. They want you to stay alive & healthy as long as possible & will not propose any treatment which would put you at risk unnecessarily. If there is a risk associated with a particular type of treatment it’ll be either the one that is least risky compared to other treatments for the same illness/condition or the one that has the greatest chance of success. They won’t take unnecessary risks!

    Honestly, I know very little about this type of treatment or your wife’s condition, just my own dealings with medical people over the years. I’ve had brain surgery for recurring (benign) brain tumours 12 times & been through 2 courses of radiotherapy. They removed my pituitary gland in ‘95 & I’ve been taking eltroxin ever since without any significant problems.
    The best advise I can offer is writing down your questions, explain your fears and don’t leave the appointment without your questions being answered.

    Good luck! (and good health!!)


    Thank you very much for this very considered and thought out reply. I really appreciate the time it took you to go through this response.

    Also I suppose if there is one good thing to come out of this is that it has made me far more sympathetic towards the plight of others. People always say when you are young that there will be nothing that will teach you more than life experience. Pity you have to live it to realise what is meant by that saying!

    I am sorry to hear all the pain you have suffered but I am glad you are through it. :)


  • Moderators, Social & Fun Moderators Posts: 4,267 Mod ✭✭✭✭TherapyBoy


    Ah..unfortunately I’ll never be through it. Although the tumour itself won’t kill me it always grows back. Neurosurgeon has told me that I’ve had so much brain surgery now & there’s so much scar tissue inside they can’t safely do anymore surgery for tumour removal so it’ll be interesting to say the least whenever it does reappear! Fun & games! :pac:

    I’m happy to be able to help in any small way I can, any problems or questions you think I might have an answer for don’t hesitate to fire them my way.


  • Registered Users Posts: 488 ✭✭the-island-man


    TherapyBoy wrote: »
    Ah..unfortunately I’ll never be through it. Although the tumour itself won’t kill me it always grows back. Neurosurgeon has told me that I’ve had so much brain surgery now & there’s so much scar tissue inside they can’t safely do anymore surgery for tumour removal so it’ll be interesting to say the least whenever it does reappear! Fun & games! :pac:

    I’m happy to be able to help in any small way I can, any problems or questions you think I might have an answer for don’t hesitate to fire them my way.

    At least it's something that you seem to be getting access to healthcare needed. I hope it goes well and that there are advances in Neurology in the mean time.

    I have two questions:
    1) Unfortunately to add to the mix we were just about to move back to Ireland after 2 years away when we learned of the Thyroid growth meaning that we had no health insurance in Ireland at the time. We are both looking forward to the 5 year pre-existing condition clause lapsing so that we can access private healthcare for ongoing checkups.
    Is this something that has been a help for you?
    2) Is there any nice things that stick out that people did when you were going through the worst of it? I am obviously trying to support my wife as much as I can. I've been sleeping in a seperate room with the baby at night since she was born to ensure my wife gets plenty of rest. but outside of the mundane day to day help I would like to surprise her.


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  • Moderators, Social & Fun Moderators Posts: 4,267 Mod ✭✭✭✭TherapyBoy


    Luckily, my parents had started us on a VHI private health insurance scheme about a year before everything kicked off & they always kept it going. It’s never really increased in price beyond the usual yearly up & downs. It has been helpful, mostly with regard to hospital stays for surgery where I normally end up post-surgery in a single or semi-private room and for consultant visits where there’s almost no waiting compared to the public hospital clinics as well as you’re sure to be meeting the actual neurosurgeon/endocrinologist/radiologist etc rather than someone from his/her team. In saying that, I don’t think the level of care provided would be any less without it. Someone with the same condition as me but without insurance will be treated in the same ward by the same doctors at the same time, they’re just in a 6 bed ward next door instead of a private room. It does take the pressure off the ongoing check-ups, meeting on a private basis tends to be much more relaxed in my experience.

    I can’t think of anything that sticks out particularly as people being nice, I’m sure there has been but I’ve been seriously ill for so long that I think anyone who knows me treats me a certain way. My parents are & always have been absolute warriors to do with everything, always looked after me brilliantly in every way possible & made things as easy for me as they could. My sister & all my close friends always looked after me when I was out, especially post-surgery.

    With regard to your wife, things like taking the baby so she can get a proper rest is perfect. Fatigue is a massive problem for all after any major surgery & being able to get a good sleep makes a huge difference to your quality of life. Honestly, helping out with the mundane day-to-day stuff is without a doubt one of the best things you can do, make life easy, restful & stress free for her. You’d know her best as to what sort of surprise she’d appreciate, but if it was something like going out for a meal/event or going away for a weekend I’d be sure to give her plenty of notice & depending on how she was doing coming up to the time half-expect her to want to cancel it. I know it kinda takes the ‘surprise’ out of the surprise but telling her about it first & having a chat about what she’d be up for would I think be a good idea. As I said though, you know her best! ;)


  • Registered Users Posts: 9,893 ✭✭✭Canis Lupus


    I've had RAI treatment due to a thyroid condition they couuldn't control. I honestly can't remember the exact analogy the doc gave me as I talked about isolating myself from the GF but it was along the lines you could literally glue yourself to her and she'd be fine it's just a case that if someone is radioactive it's simply best practise to not expose someone else to it regardless of dose.

    As for the second point any treatment like that does raise future cancer risks but you need to ask the doc what's the real chances here as I can't remember but the number is really low. The fact is that the RAI is taken in by any stray remaining thyroid cells and destroyed which is important because if any of these remaining stray cells are cancerous they'll start growing again. What you have to weigh is the risk of treatment vs non treatment and 'curing' cancer on your first go is always the best chance.

    Anyway I hope it all goes well whatever happens.


  • Registered Users Posts: 312 ✭✭Abba987


    Hi,

    A little over a year ago my pregnant wife learned that there was a suspicion that she had a cancerous nodule growing on her Thyroid.

    Since then she has given birth to a beautiful girl and had a successful operation to remove the Thyroid which was confirmed to have cancerous cells. She also seems to have little issues with the replacement medication Eltroxin.

    After months of confusion over whether the local endocrinologist department sent a simple referral letter to St. Luke's to continue on to the next step of getting radio-iodine treatment she finally has an appointment this week with a consultant to discuss her options.

    I am trying to support her in the best way I can but I find I am having a real issue with getting my head around the use of radio-iodine treatment.

    My wife and I have two different concerns about it:

    - My wife is worried about the harm the radiation may have on our baby even after spending a week in isolation and an additional week away from the baby.
    - My main concern is articles suggesting at the very least radio-iodine treatment presents an increased risk of contracting a second primary malignancy somewhere else in the body at a future point.

    Sorry for reaching out here but we both feel we've been fobbed off in relation to these questions at the endocrinology department at our local hospital and I would like to get some advice on these concerns or know what other questions we should be asking at the appointment Thursday?

    I'm sorry I can't help but I'm getting thyroid removal soon and thought that would avoid the radiation treatment ?
    How is your wife now


  • Registered Users Posts: 488 ✭✭the-island-man


    Abba987 wrote: »
    I'm sorry I can't help but I'm getting thyroid removal soon and thought that would avoid the radiation treatment ?
    How is your wife now

    I suppose it depends on what they find when they remove the Thyroid. Hopefully in your case it will not be needed.

    My wife is in a gray area so they are not sure. She is due to do something called an iodine uptake scan in St.Lukes in the coming weeks which will determine whether or not she needs the radio-iodine treatment.

    We are both much happier since transferring to St.Lukes. They seem very competent there. The staff also seem to have the right approach towards patients, they are sympathetic and calming.

    We were really happy with the surgeon who done the operation at our local hospital but the endocrinologist really upset us. It took 6 months for her to send a simple referral letter and once that happened we received an appointment within two weeks for St.Lukes.

    However we still both feel really lucky in life and it's important to remember as one doctor strangely put it Thyroid cancer is the best cancer you can get. I hope all goes well for you.


  • Registered Users Posts: 32,634 ✭✭✭✭Graces7


    I suppose it depends on what they find when they remove the Thyroid. Hopefully in your case it will not be needed.


    We were really happy with the surgeon who done the operation at our local hospital but the endocrinologist really upset us. It took 6 months for her to send a simple referral letter and once that happened we received an appointment within two weeks for St.Lukes.

    However we still both feel really lucky in life and it's important to remember as one doctor strangely put it Thyroid cancer is the best cancer you can get. I hope all goes well for you.

    Makes me think re Chernobyl where thyroid cancer is all but epidemic among children. They call the surgery scar the "Chernobyl necklace". Seems indeed easier to treat than many others.


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  • Registered Users Posts: 1,884 ✭✭✭SlowBlowin


    Hi OP

    I really feel for you. Cancer impacts both the patient and family, permanently, it introduces huge amounts of stress and anxiety to your life. Although you dont specifically mention it, with Thyroid issues, relationships often are the first thing to suffer as hormones are kicked from one extreme to the other. Having a new baby to care for at the same time must seem overwhelming at times, we adopted a young lad with ADHD 6 months prior to diagnosis.

    Being the partner of a cancer patient with thyroid involvement is very hard, not just my experience, but well documented.

    Your post does not really mention any of the above issues but If you need help or advice from me, even if its just "did you feel like that, and how did you cope with that", I am happy to help.

    Unfortunately cancer currently has to treated in an aggressive way, radiation, chemo, PET scans etc ALL give rise to secondary cancer risk. When the cancer is everywhere, as my wife's was, the subject of secondary cancer seems irrelevant at the time (my wife's untreated thyroid produced a stage 3B Lymphoma cancer).

    My personal advice, (no expert just based on my experience) on how I would approach it, would be as follows:

    If you have time try and find a thyroid cancer talk/seminar, many UK hospitals run these. They will be hosted by one or two experts surgeon or consultants, and attended by a dozen or so cancer patients and their partners. Fantastic advice can be found from both attendees and speakers, and there is a bit of a "off the record" atmosphere.

    Internet research is dangerous, stick to official trial results, and verifiable sources of information (Macmillan is great).

    Gather the facts you can find regarding the statistics and patient experiences, and sit down with your wife, keeping it simple weigh up the maths. Try and ignore "but I will always be worried about the risk of secondary cancer", if that maths is saying to do it. You will always be worried about cancer returning, forever, whether you have the treatment or not, secondary or primary.

    I am glad you are now more comfortable with the help you are getting, we had great help too.

    Sorry my post is not full of sunshine and happiness, believe me I feel for you and wish you the very best. As I am sure you are finding out, its a bit of a slog, but work at it, business like, and having a new baby will help you find/make times where there is happiness and sunshine, both through treatment and beyond..

    One final point, I now treat "the best cancer you can get", as a throw away comment. I have heard it about several cancers, and while it induces a smile in many newly diagnosed patients, its not very constructive and trivialises what is a very serious condition.


  • Registered Users Posts: 488 ✭✭the-island-man


    SlowBlowin wrote: »
    Hi OP

    I really feel for you. Cancer impacts both the patient and family, permanently, it introduces huge amounts of stress and anxiety to your life. Although you dont specifically mention it, with Thyroid issues, relationships often are the first thing to suffer as hormones are kicked from one extreme to the other. Having a new baby to care for at the same time must seem overwhelming at times, we adopted a young lad with ADHD 6 months prior to diagnosis.

    Being the partner of a cancer patient with thyroid involvement is very hard, not just my experience, but well documented.

    Your post does not really mention any of the above issues but If you need help or advice from me, even if its just "did you feel like that, and how did you cope with that", I am happy to help.

    I am really sorry you have had a tough time. I feel that I have had a different experience though. Definitely has been very stressful no doubt about that. I read all about the potential for the removal of a Thyroid to cause mood swings and erratic behaviour but my wife has not shown any sign of this. Of course we still have arguments now and then but she has been stronger than me a lot of the time.

    Other things have helped also. Both our families have been a great support. Our daughter has been very placid and easy to mind. Also, we both have good jobs. It's times like this you realise it pays to put your education first when you're younger.
    SlowBlowin wrote: »

    Unfortunately cancer currently has to treated in an aggressive way, radiation, chemo, PET scans etc ALL give rise to secondary cancer risk. When the cancer is everywhere, as my wife's was, the subject of secondary cancer seems irrelevant at the time (my wife's untreated thyroid produced a stage 3B Lymphoma cancer).

    My personal advice, (no expert just based on my experience) on how I would approach it, would be as follows:

    If you have time try and find a thyroid cancer talk/seminar, many UK hospitals run these. They will be hosted by one or two experts surgeon or consultants, and attended by a dozen or so cancer patients and their partners. Fantastic advice can be found from both attendees and speakers, and there is a bit of a "off the record" atmosphere.

    Internet research is dangerous, stick to official trial results, and verifiable sources of information (Macmillan is great).

    Gather the facts you can find regarding the statistics and patient experiences, and sit down with your wife, keeping it simple weigh up the maths. Try and ignore "but I will always be worried about the risk of secondary cancer", if that maths is saying to do it. You will always be worried about cancer returning, forever, whether you have the treatment or not, secondary or primary.

    I am glad you are now more comfortable with the help you are getting, we had great help too.

    Sorry my post is not full of sunshine and happiness, believe me I feel for you and wish you the very best. As I am sure you are finding out, its a bit of a slog, but work at it, business like, and having a new baby will help you find/make times where there is happiness and sunshine, both through treatment and beyond..

    One final point, I now treat "the best cancer you can get", as a throw away comment. I have heard it about several cancers, and while it induces a smile in many newly diagnosed patients, its not very constructive and trivialises what is a very serious condition.

    Sorry again to hear you have gone through a lot of difficulty. Up to now we have been told that the cancer has not spread even to any of the Lymph nodes. It seemed to be confined to the Thyroid and all we can do for now is to continue to work under this assumption.

    Although the length of time it has taken to get to this point is always a worry.


  • Moderators, Society & Culture Moderators Posts: 7,458 Mod ✭✭✭✭CathyMoran


    I am a 13 year oesophageal cancer survivor (and had severe thyroid issues treated as a young child with radiation) and mum of two young children - my husband has always said that your statistics are unique to you - yes the fear never goes and after it has entered your life it is always the 'new normal' but you move forward. It was and is harder in my spouse than me. Best wishes.


  • Registered Users Posts: 488 ✭✭the-island-man


    Just thought I'd post back here in the hope that if anyone has a similar misfortune in the future this final reply will provide some hope to them.

    My wife is a bit over two months past her radio-iodine treatment. She got a low dosage in the end based off the results from the scan. In total she spent one week in complete isolation in a specially designed room in St. Luke's and then she spent the following two weeks in a hotel to ensure our baby wasn't exposed to any radiation.

    She had a review with the consultant this month and everything seems fine. She has to do another scan in 6 to 9 months.

    She still shows no symptoms of fatigue or other ill affects from taking Eltroxin.

    I would say there is truth in what other contributors to this thread have said. You will likely feel more anxious in life about a raft of "what if's" but you do just have to get on with it and hope for the best.

    Thanks for all the replies.


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