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Newbie Apologises in Advance

clutterbuggles
Posts: 2
Joined: Apr 2011

Hello to all,
A quick intro - I'm the child of someone recently diagnosed with thyroid cancer and I am struggling (as is my mom) to come to grips with things and I am still at the stage of feeling overwhelmed by not only the diagnosis, but the disease and treatment options.

So my apologies for any dumb questions and my 'intrusion'. I want the best for my mother and want to help her make educated decisions and already I'm concerned that she might be 'along for the ride' rather than pro-active. She's not taken the news well and has a history of cancer in her family - it seems to me that she's already expecting the worst.

I haven't had a chance to read all of the topics in the discussion forums - so I'm sorry if this is covered already - but my mom has had concerns about osteoporosis for years (related both to genetics and medication that she has been on.) She had a bone density scan years ago and planned to have another one this year - but now that cancer has cropped up - she wants to hold off on the scan. If one of the possibilities is that her thyroid cancer (two 3cm+ tumours that may also require her parathyroid being removed) could metastasize to her bones and if she loses her parathyroid as well - wouldn't it be prudent to see about being checked for osteoporosis as soon as possible to have some sort of idea if she's losing bone density? I mean, bone cancer hurts and so does osteoporosis... how is she meant to know the difference? My main concern isn't that she'll go running in thinking she's got bone cancer every other week. My main concern is that she'll spend another 6 months silently thinking 'I wonder if I have bone cancer?' (Just like she spent 6 months silently wondering if she might have thyroid cancer before even speaking to the doctor...)

Baldy's picture
Baldy
Posts: 225
Joined: Mar 2011

Hi,

There is a web site my ENT surgeon recommended the first time I saw him after my diagnosis. It's been very informative and helped me know what to expect and why to expect it. I don't remember if it addresses your combined concerns of thyroid, parathyroid and osteoporosis or not. It is the National Cancer Institute's web site and here are two links. The first is to the first or home page for thyroid cancer and the second is titled "What You Need to Know ..."

http://www.cancer.gov/cancertopics/pdq/treatment/thyroid/Patient/page1

http://www.cancer.gov/cancertopics/wyntk/thyroid

I hope this helps out, good luck to you and your mom.

Alan

PS If the thyroid cancer has spread to her bones, she'll have thyroid cancer that has spread to her bones, not bone cancer. This is a common mistake and I made it too when I first started thinking about metastasis. It may seem like I'm picking nits, but it makes a big difference to the kind of treatment she'd receive if it has progressed that far. For instance, if she undergoes RadioActive Iodine [RAI] Therapy, there's a chance {probably a very good chance} that it will destroy any metastasized cells.

PPS But, of course, she needs to ask her doctors these questions. Make a list before she goes so she doesn't forget anything. It would probably be a big help if someone went with her to make sure she asks the questions and understands and notes down the answers.

clutterbuggles
Posts: 2
Joined: Apr 2011

Thanks Alan, I've bookmarked those sites and passed the links on to my mom. Thanks for setting me straight about the possible metastasis to her bones. They're not sure if they'll be doing RAI after her surgery or not. I live several thousand miles from my mom, so I'm in a bit of an awkward position as I'm not there to be with her - and that makes it a bit scary for me as well because I have to rely on whatever I hear secondhand. It makes it hard to not be the 'supportive but overwhelming' type of person. I have a chronic condition myself, so I do know that sometimes bombarding people with 'helpful advice' isn't really what they need. But until we know more from the doctors, I think it's a good idea to at least be familiar with what's to come.

I'll make sure that she's got a list of questions ready, and I'm sure she will have another family member with her for her appointments.

Thanks again for the input, it's greatly appreciated.

nasher
Posts: 507
Joined: Apr 2010

Do not be afrade to ask a question that has been asked before

as far as the parathyroids (normaly you have 4 and only 1 needs to be functional)

myself when they took out my thryord they also removed 2 of my 4 parathyroids.

yes i can definatly understand your concerns with bone density and loosing a parathyroid or more than one. even if they are removed they can give suppliments that will basicaly do the job the parathyroid normaly dose.

...

I do wonder why she wants to hold off on the bone density scan.. I can see she may need to do another one more frequently but ...

and do not be afrade of asking a stupid question or haveing your ideas wrong... this is how we all learn here

some questions for you (and or your mom)
1)what is the treatment option she is going for and what fears do you have of it?
2) do you know what type of thyroid cancer and what stage?
3) do both of you know how to read and interperate lab results so you can be on the same page as the doctor?

you mentioned that you were not sure if she would do RAI or not...
Most of us here are probably going to say she should get it but she should also know all about it pro's and con's

another site
www.thyca.org

a very informative site.

the only concern I have seen about thyroid (and thyroid replacement) and bone density is hyperthyroidism or over thyroid replacement increasing the risk.

as for the silently thinking I wonder if i have (insert type here) cancer... I think most of us have worries about that now and then.

I am glad you are supporting and helping your mom in any way you can... It is amazing how much a little support goes. Does she have anyone local to help her with support?

I am about to go to my 1 year out scans and I’m worrying about did they get it all or not... or what next.

The doctors will normally not tell you a lot of the information you should or need to have... I mean they told me i had cancer but didn’t mention it was 2 separate types of thyroid cancer in separate areas of the thyroid. they told me some of my blood tests were a little low one time but didn’t tell me why it was important.

As for my advice
1) Push for the RAI unless there is a good reason not to.
2) Extra scans do not hurt
3) Learn lab results so when labs are taken you can get a copy and review it as well and come prepared to ask the doctor questions
4) ask questions of the doc, nurse as well as on boards like this one.
5) don’t be afraid to ask a stupid question
6) Find a nutritionist after surgery to check for vitamins/minerals and other issues.
7) Printouts always help I have a full copy of my labs at work and at home so I can reference them when I ask questions
8) BOTH OF YOU find a local cancer support group to each of you. They will be happy to answer your questions as well and I am sure they will be happy when you say you are support for your mom and want to know more.
9) I found a daily blog or word doc or notebook being useful to sort my mind and help me remember

...

Ok sooner or later i am sure i am going to make a post that is less than one page....

Craig

LBlackman
Posts: 113
Joined: Mar 2011

I think you are awesome caring and being there for your mom. Family is the most important thing. One side effect is brain fog, so don't worry about repeating questions, we may all need them repeated at sometime. The most important thing I have noticed is to be your own advocate, or be one for your mother, nobody else will. Endocrinologist deal with several different types of cancer and it's important to follow up and question everything. Always bring a list of questions, something I have never done, but after the good advice and topics on here I have found I have two pages for my Dr. when I see her next.
Best wishes to your mother and her angel which is you...:)
Lynne

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