Mar 22, 2012 03:45AM jgbartlett wrote:
I had a thyroidectomy in 2006 due to a benign tumour the size of an egg. I agree that diseases of the thyroid & BC are linked.
Posted on: Mar 18, 2012 04:10AM - edited Mar 18, 2012 04:12AM by sam52
I keep on seeing posts that people have had these dual diagnoses; sometimes the parathyroid disease pre-dated the bc and sometimes the other way round.
I am becoming convinced that the two are causally related, so am interested to see just how many of you have been affected. Many of us are getting osteoporotic and blaming it on chemo and/or AI therapy; hyperparathyroidism causes osteoporosis too, and many people are unaware of this and undiagnosed. This is seriously an issue that needs to be researched.
I was diagnosed with a parathyroid tumor (benign, as 99% of them are) in 2009, eight years after my bc dx - only because I eventually presented at the endocrinologist after ever-worsening osteoporosis, despite taking bisphosphonates.I had the adenoma removed, along with the gland, exactly two years ago, and as far as I know, the disease has now been halted.
Please add your coments to this thread, as I believe there are very many of us with these two diagnoses.
Posts 1 - 30 (285 total)
Mar 22, 2012 03:45AM jgbartlett wrote:
I had a thyroidectomy in 2006 due to a benign tumour the size of an egg. I agree that diseases of the thyroid & BC are linked.
Mar 22, 2012 04:10AM sam52 wrote:
Thanks for your reply,jgbartlett, and glad you got your thyroid tumor sorted.
However, I am talking about PARAthyroid disease - the 4 parathyroid gland have a very diffrent function from the thyroids, and are essentially the calcium thermostst for the body.
Hyperparathyroidism is a very under-diagnosed disease, but seems to be strongly linked with bc.
Mar 24, 2012 07:52AM sylviaexmouthuk wrote:Hello sam52
Thank you for starting this new thread. As you know, I also had a parathyroidectomy in 2009 and was cured. I was diagnosed with parathyroid disease in 2005 at the same time as I was diagnosed with breast cancer. My breast cancer surgeon was quite sure my parathyroid problem preceded my breast cancer. She decided this on the size of the benign adenoma she removed from my parathyroid gland. However, I am not convinced I had problems with osteoporosis before the treatment for breast cancer. It was not until about 2008 that I discovered I had lost some height and then later had a DEXA scan which confirmed osteoporosis. Until then my height had remained the same. Of course I cannot be sure I did not have any problems and the osteoporosis could be a combination of both the disease and the cancer treatment.
I am convinced there is a connection between parathyroid disease and breast cancer, but, as research shows, it could be that both were caused by something else. It has been suggested that this could be mass X-rays as a child.
Apr 22, 2012 06:03AM croceau wrote:
I had a parathyroidectomy last week and stumbled onto this forum while looking for post-op care information. What caught my eye is that my parathyroid problems were diagnosed at the same time as I was diagnosised with breast cancer in 2009. We had to wait to do some of the scans until after I was through with radiation and at that time there was a shadow on one parathyroid gland and I had elevated blood calcium levels but not PHT levels. We kept an eye on it and did another scan about 6 months ago and sure enough a small tumor had developed and hence the parathyroidectomy.
Because there is a strong family history of osteoporosis in my family I elected not to take Arimidex and in fact decided against taking Tamoxifen as well to avoid the side effects (and my chance of cancer recurrence was very low). Does the correlation include people post breast cancer who took Arimidex? And is there any research on this dual diagnosis occurance?
Apr 22, 2012 07:03AM financegirl wrote:
Never read this but ironically I had two parathyroids removed in 2009. Diagnosed April 2011 with BC. As for Arimidex - I am on it and had to have a DEXA scan as baseline before beginning Arimidex b/c of thinning bones. But I have a large chance of recurrence so I am willing to balance and exchange osteoporosis against the chance of a recurrence.
Apr 22, 2012 08:58AM 37antiques wrote:
Very interesting. I am just awaiting surgery for the parathyroid, but it took a very long time to diagnose it. If doctors were more aware, I wonder how many of us would have it?
I just feel crappy and my vitamin D dropped to 8, no matter how much I took it stayed there, so that's when they started checking my calcium and PTH levels. Oddly, the onco didn't know why, it took a routine follow up with my BS, who is also an endocrinologist, to find out. I was diagnosed as stage IV in the same time period. So was it already in my bones, or was it caused by the calcium being depleted from my bones for a couple years making them an easy target?
I don't know that we ever will know, but it does seem there are signifigant links between thyroid, parathyroid and vitamin D in BC patients. They say BC can take something like 12 years to form after being triggered, so I'd have to think that comes first, and maybe it triggers a hormone in the parathyroid? It would be interesting to see how many are affected with hormone positive vs. hormone negative.
Oh, yes, I did take arimidex, but not for any great length of time - probably just a couple months until they found this (I want to keep my bones as long as possible). And I never took tamox or any other hormone therapy.
Very interesting thread, thank you for starting it. It will be interesting to see what comes up.
Nov 28, 2012 03:51AM - edited Nov 28, 2012 03:52AM by Mona88
I'm glad I've stumbled on this forum. My daughter mentioned to me that she found out there was some correlation between breast cancer and parathyroid hormone working 'overtime'. In 2006, during a routine blood test, I found out that there was too much calcium in my blood, and from then on, I started having blood tests, DEXA scans, etc., and last month, I was told I had breast cancer - so the two might really be connected. My oncologist mentioned that my late father's cancer of the pancreas might be connected with my breast cancer. So, I need to do some research in that direction too. I know that taking calcium tablets, which I might have to when I start hormone therapy, is not the best, but then, osteoporosis has to be fought against too, so we are in a nowin situation. Low vitamin D is also connected with the parathyroid glands not doing a proper job.
When I looked out of my window in the morning, I thought to myself that one should be grateful for being able to enjoy being able to see, also being able to hear, to taste food; we should be grateful for what we are still able to enjoy. I've been told by friends to keep being positive, so lets look "on the bright side of things".
Nov 30, 2012 08:00AM sylviaexmouthuk wrote:
Hello Sue and mona88
I have just read your posts and found them most interesting. I was diagnosed with hyperparathyroidism and triple negative breast cancer (IDC) in June 2005. My consultant said that she thought the hyperparathyroidism preceded the breast cancer. I had a parathyroidectomy in November 2009 to remove a non-malignant adenoma and that is supposed to cure the problem.
You might want to look at posts in the past between me and sam52 on the High calcium thread in the forum Not diagnosed with recurrence or mets but concerned. We have also spoken about it on Calling all triple negative cancer patients in the UK.
I am convinced there is a connection between the two. You might want to look at parathyroid.com for more information.
I think hyperparathyroidism is under-diagnosed because your PTH (parathyroid hormone level) does not form part of standard blood tests. It should do because of the problem it causes with calcium leaching from the bones into the bloodstream and causing osteoporosis.
I have also read that problems with the thyroid are also a risk factor with breast cancer.
It does not seem to matter with breast cancer whether you have positive or negative receptors.
Nov 30, 2012 08:05AM sylviaexmouthuk wrote:
I have just been reading your details and am so sorry to hear all you have been through. I do hope you will be alright.
Dec 4, 2012 09:22AM sylviaexmouthuk wrote:
Please bump this thread up.
Have a look at www.parathyroid.com. There is all the information there that you may need.
Dec 5, 2012 02:36AM sylviaexmouthuk wrote:
I thought you might be interested in this post that I have just posted on the High Calcium thread in the forum Not diagnosed with recurrence or mets but concerned.
I know that you have to be careful about websites on the internet, but in my own case I really listened to my breast cancer surgeon who is also an endocrinologist and has a lot of experience. She will always go that extra mile and I really trust her.
She diagnosed my hyperparathyroidism at the same time as my triple negative breast cancer back in 2005. She told me that by the size of the non-malignant adenoma on my upper right parathyroid gland (same side as my breast cancer), that it had been there before my breast cancer started. She told me that after my breast cancer treatment was over and that I was fully recovered that I would need to have surgery to remove the adenoma and that then I would be considered cured of my hyperparathyroidism and that the parathyroid hormone and calcium would normalise, and that this would be quick.
I had general anaesthetic and full surgery in 2009. She explained to me why she did not do minimal invasive surgery. I had the surgery one day and left the hospital the next and my parathyroid hormone and calcium were already normalising. I had no bad effects whatsoever and everything has remained normal to date.
I had a DEXA scan before this surgery and osteoporosis was confirmed. Four months later I had another DEXA scan and there was a slight improvement. In our health system I have not been allowed to have another DEXA scan since then, but I am going to push for one now. Apparently osteoporosis caused by hyperparathyroidism is reversible in most cases. I am not sure what will happen in my own case as my osteoporosis has probably been compounded by the chemotherapy and radiotherapy from my breast cancer treatment.
I do believe my endocrinologist and parathyroid.com when they say that the only way to treat and cure hyperparathyroidism is through surgery. All the time you delay, as I did for a while, the adenoma will continue to grow and the parathyroid hormone will increase or be variable as it tries to deal with the calcium that is leaching from the bones into the blood stream. The only function of the four parathyroid glands is to control the level of calcium in the body, and once one or more of the glands gets an adenoma the parathyroid gland can no longer control the parathyroid hormone. Often the other three have gone dormant, but start to function once the adenoma has been removed.
I had a sestamibi scan before surgery which enables the endocrinologist to know exactly where the four parathyroid glands were located. My endocrinologist did the full surgery because she liked to look at the other three as well. I have no scar on my neck where the surgery was done and my voice was not affected.
By the way, apparently if you have osteoporosis as a result of hyperparathyroidism, bisphosphonates are of no use. I would not take them anyway. I am dealing with my osteoporosis with calcium supplements, magnesium and vitamin D. I am cautious about the calcium supplements as I think they may do more harm than good.
I do not know if you measure parathyroid hormone in the same way as in the UK, but here the normal range of PTH is 1.2 to 7.6. Mine was way above that before surgery. My calcium was only slightly elevated but that is just as bad as it being high.
It is interesting to read together the High Calcium thread and the Parathyroid Disease and Breast Cancer thread (in the IDC forum). You might also like to compare to parathyroid.com the following link to Medscape – Hyperparathyroidism: http://emedicine.medscape.com/article/127351-overview#showall
Dec 7, 2012 02:56PM jude14 wrote:
I had graves disease and had to do 2 rounds of radioactive iodine in 1990. In 2005 I came up with a kidney stone which brought on test and found out I had a bad parathyroid gland. They said it was probably from the radioactive iodine. Had surgery got all that taken care of then in 2007 my mammogram found the breast cancer. I have read that the radioactive iodine could have also caused the breast cancer. Maybe the parathyroid caused the Bc. I feel there is definetly a relation between the 2 or 3. No one else in my family had thyroid...parathyroid...or breast cancer.
Dec 9, 2012 05:53AM sylviaexmouthuk wrote:
I was really fascinated to read your post and to learn that you had a bad parathyroid gland after radioactive iodine treatment for a thyroid problem. I think Graves disease is an over-active thyroid. My niece had an over-active thyroid when she was just a teenager and her parents would not allow her to have the radioactive iodine treatment but she was on medication for a long time. It looks as though your parathyroid problem could have caused the breast cancer. I think my over-active parathyroid caused my breast cancer and that it is connected to excess calcium being leached out of the bones and into the blood and elsewhere. I was diagnosed with both at the same time, but the consultant said the parathyroid problem had preceded the breast cancer.
You might like to read the thread High calcium (Forum Not diagnosed with recurrence or mets but concerned).
Wishing you well.
Dec 12, 2012 10:07AM sylviaexmouthuk wrote:
Please keep this thread going. I am sure there are a lot of people with undiagnosed parathyroid disease.
Dec 14, 2012 10:20AM sylviaexmouthuk wrote:
I have just looked up about Prolia (denosumab - a monoclonal antibody). My medical team has never mentioned this to stop bone loss in osteoporosis. Please check out the side effects.
Is anybody having injections of this to deal with osteoporosis from whatever cause?
The link is:
Dec 14, 2012 11:56AM - edited Dec 16, 2012 12:34PM by ICanDoThis
Hi there - was just diagnosed with hyperparathyroidism yesterday, so I am new to this thread. Sylvia asked me to post here as well.
I have had osteopenia/osteoporosis for the last several years, and nothing seemed to make it better. I was on Fosamax for several years, and it stabilized, but then my PCP noticed the fatigue and bone pain and tested my D levels - they were 7. My parathyroid was always high-ish, but my calcium was high-normal, so we kept treating for low D.
But the reading I did here about low D and BC led me to wonder what the heck was going on - I went off Fosamax because I had stomach pains during DH's bout with esophageal cancer, and then last year's bone scan was a disaster - lost 12% at my hips, lost 3% in my back, and my forearms are osteoporotic.
At the next blood work, my parathyroid hormone was really high - 117, but my calcium was normal, again. Did a 24 hr urine, and came up with high numbers, so doc agreed to a scan.
But, I had just had my first Prolia injection - no side effects - the nurses are really high on this at the endocrinologists - they are getting wonderful results, very few side effects. So we are going to put off surgery for a while - redo numbers in a few months - we just don't want to crash too many things into the same set of bones at once.
Dec 14, 2012 01:16PM - edited Dec 14, 2012 01:17PM by ICanDoThis
And this is one of the papers about parathyroidism and BC:
Dec 15, 2012 02:21AM sylviaexmouthuk wrote:
Hello sam52 and Sue
I have just read the link that Sue provided and must say I found it somewhat wordy and feel that it is about time the medical profession started writing out research in ways that are easily understood by most people, especially with so many using the internet for information.
It seems to me that what they have established is simply that women who have hyperparathyroidism (and remember there will be many who do not know they have it) and then develop breast cancer have the same survival rates from their cancer as those women who do not have hyperparathyroidism and develop breast cancer.
What the study does not show is whether there is a link between having hyperparathyroidism and developing breast cancer and why hyperparathyroidism should cause breast cancer. Is this your interpretation?
I know, if I believe my breast cancer consultant/endocrinologist, that my hyperparathyroidism preceded my breast cancer, even though they were diagnosed at the same time. She told me that she was deciding this on the size of the adenoma that she removed from the upper right parathyroid gland. She said that the size of that adenoma showed her that I had had hyperparathyroidism for some time. She told me that the breast cancer tumour had probably started about 2002 and it was removed in 2005. By the way, the adenoma that was removed was 2.5 cms in size.
If we refer to the Swedish research I seem to remember it said hyperparathyroidism and breast cancer development might be connected but it could be an unknown factor causing both, such as x-rays in childhood.
I am still thinking about the Prolia injection and whether it could do more harm than good. What do you think, sam52? If you have a look at it on the internet and read what it does and the side effects, I think you might be concerned.
My own humble opinion is that somehow my undetected hyperparathyroidism and what it was doing to my calcium was somehow connected to my breast cancer. The other factor seems to be low vitamin D. Since we are not regularly tested how do we know what the levels are? All I can say is that I did ask at the hospital to have my vitamin D level tested, and I think that was after the breast cancer treatment and before the surgery to remove the adenoma, and I was told my level was excellent and even had a letter from the consultant saying that the person who had tested it had told her I should be congratulated on my excellent level of vitamin D!!! In the words of Alice, things get curious and curiouser.
Dec 22, 2012 07:49AM sylviaexmouthuk wrote:
I see this thread is slipping off the front pages.
Please try to keep it going.
Dec 28, 2012 08:09AM sylviaexmouthuk wrote:
I was just wondering how you are getting on.
I hope all is well.
Feb 20, 2013 10:54AM sylviaexmouthuk wrote:
This important thread has been inactive for too long.
What has happened to all you people with parathyroid problems? We need to keep this thread going and the High calcium thread.
Apr 13, 2013 11:09AM sylviaexmouthuk wrote:
I was sorry to see this thread is lying dormant,
What is happening.
Apr 13, 2013 08:26PM Michele2013 wrote:
I have to have my thyroid removed before I get radiation. Maybe next week. Pet scan in November lit up in my thyroid.
Have done a lot of searching and have not found mets to thyroid. Has anyone found this to be true.
Apr 15, 2013 06:14AM sylviaexmouthuk wrote:
I was interested to read your thread. Why do you have to have your thyroid removed before starting radiotherapy?
Warm thoughts, Sylvia.
Apr 15, 2013 06:42AM Michele2013 wrote:
This is what my bs told me last week. Petscan lit up(in november) and I went to see an ENT. He did a biopsy, then referred me to a thoracic surgeon. Originally they were going to take my thyroid at the same time as my bmx, but I developed a PE and now on lovenox.
Maybe they don't want to wait after 6 weeks of radiations to remove it.
Hopefully this answers your questions:)
Apr 15, 2013 09:23AM sylviaexmouthuk wrote:
Thank you for your post. You do seem to have been having a difficult time. Looking at your details I can see that you have been through a lot. I do hope things will get better for you. I was sorry to hear that you had developed a pulmonary embolism and that you are on medications for that. Have you any idea what caused the embolism?
You say that you had a PET scan which lit up. Am I right in assuming that it lit up the thyroid and does this mean that there is cancer there? Has it spread from the breast cancer? When are you due to have your thyroid removed? What will happen to the four parathyroid glands that sit on the thyroid and control calcium levels in the blood? I do know that they can put a parathyroid gland to function elsewhere in the body. Does this mean that you will have to be on thyroxine medication because you will not have a thyroid gland and if the four parathyroid glands are removed as well, I presume you will need synthetic parathyroid hormone to deal with calcium control. Perhaps your BS has already answered these questions for you.
I do hope everything will go well and that the thyroid surgery and the radiotherapy will soon be behind you.
I do not know if you have read the five pages of this thread, but you will see posts from me and sam52. We both had breast cancer and we both had over active parathyroid glands and we went through all the build up to having one of them removed together. We looked at a lot of research about the connection between hyperparathyroidism and the development of breast cancer. Problems with an over active parathyroid cause osteoporosis, as do problems with an over active thyroid. Breast cancer treatment also causes osteoporosis. Sam52 and I both have osteoporosis. If you want more details look at the High Calcium thread in the forum Not diagnosed with mets or a recurrence but concerned.
Wishing you all the best and keep in touch.
You are welcome to post on Calling all triple negative breast cancer patients in the UK, if you wish. I had IDC triple negative and sam52 had the same as you, IDC, ER+, PR+, HER2-.
Apr 15, 2013 05:04PM Michele2013 wrote:
Thank you for your kind encouragement.
My onc said my PE was related to my chemo combo AC.
Yes, the pet lit up in my thyroid. My ENT did an ultrasound and biopsy. It is cancer, but do not know if it is b/c mets. From what I hear, it is very rare. I do not know what the parathyroid is, however I will ask at my appt. I do know that I will stay overnight and my calcium level will be checked.
You have so much knowledge, I really need to get up to date with this thyroid thing. It has been really difficult just absorbing bc. Before I see my thoracic surgeon Wednesday, I see an ob/gyn so i can have a hysterectomy due to being brca 2+. This will be done after rads.
Apr 16, 2013 05:06AM sylviaexmouthuk wrote:
I just wanted to say thank you for your post and to say that I hope all goes well when you have the thyroid surgery. The very fact that you will stay overnight and that the calcium will be checked makes me wonder whether the parathyroid glands will be removed as well. These parathyroid glands are very tiny, there are four of them, about the size of a pea, and they actually sit on the thyroid and, as I said, regulate calcium. When I had one of them removed in a parathyroidectomy operation, I had to stay in overnight and the calcium level had to be checked. On the one removed I had a benign adenoma that had caused the other three to shut down. Everything normalised after surgery.
It is good to go your appointments armed with knowledge and information. You could use the following.
B – What are the Benefits?
R – What are the Risks?
A – What are the Alternatives?
I – What does my Intuition tell me?
N – What happens if I do Nothing?
Apr 18, 2013 08:59PM alcb70 wrote:
Interesting that this thread is here & so many have parathyroid issues. I was diagnosed w/hyperparathyroidism a few yrs ago. Had a negative sestamibi scan, so no tumors. My MD asociated it to low Vit D levels. If I keep my D level around 80, my PTH stays near normal. My calcium levels have always been normal,but my MD felt it may be bc my body was stealing it from my bones to keep my serum levels normal. My MO wants me to start Zometa. Between bc tx and hyperparathyrtoidism, he thinks it will head off osteoporosis. It's also shown to reduce bone mets. VERY interesting about this link! Hmmm....