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Topic: High Blood Calcium Levels

Forum: Not Diagnosed With a Recurrence or Metastases but Concerned —

Meet others concerned about developing a recurrence or metastases.

Posted on: Jul 23, 2009 01:57PM

EllenFitz wrote:

Hi, I was diagnosed with Stage 2 Breast cancer 5 years ago - completed lumpectomy, chemo and radiation.  Been on Tamoxifen for almost 5 years because I am still pre-menopausal as measured by my estradiol count.   I went to my primary care physician for my annual physical, and she called me back to say that my calcium level was high.   I went back today to retest and to check my parathyroid hormone level, but as I read more on the internet, it seems like high calcium levels are often associated with bone mets.

So, I am terrified now - I have been dealing with my 77 year old mom's diagnosis with breast cancer and flying back and forth trying to help her to deal with chemotherapy.   I'm not sure that I can handle too much more.  

Anyone else have this calcium issues?  I don't think I really have any symptoms.  Thanks in advance! 

Dx 3/25/2004, IDC, 2cm, Stage IIB, Grade 2, 1/9 nodes, ER+/PR+, HER2-
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Jul 23, 2009 02:13PM ICanDoThis wrote:

I do understand where you're coming from - we never quite trust our bodies again.

But, parathyroid testing is an easy blood test, and isn't it better to evaluate for a problem that is more common than mets before getting TOO scared.

I have been diagnosed with parathyroid problems, secondary to high blood calcium, and it's not that uncommon on this board - thre have been multiple posts over the last few months. I've done a little research on BC and parathyroid problems, and evidently there is a significant association between the two - couldn't find anything about cause and effect, though,

Hope this helps, and I certainly would be interested in finding out your results.

Sue - Proud to be Krista's Mom Dx 12/28/2007, IDC, Left, 1cm, Stage IA, Grade 1, 0/3 nodes, ER+/PR+, HER2- (FISH)
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Jul 23, 2009 02:20PM shiny wrote:

Hi Ellen,

Just chanced upon your post and wanted to respond whilst you wait for more specific information from others. For what it is worth, since my diagnosis, I have had 3 proper "scares", 2 to do with bone, due to symptoms which ended up being agravated arthritic like degeneration, probably worse due to chemo.

Also my generalist, family doctor called me back after a few of my test results came back high; I am sorry I forget which ones but in any case, I did worry some as their were the kind that could be of concern bc wise, but nothing came of it. Hang in there, it could be lots of different things. Just get to the bottom of it as soon as you can for your peace of mind and we'll pray her for seriously boring non eventful results.

So sorry about your mother, it must be very draining on you. Hope you are able to get some rest. I am sure that some clever ladies "in the know" will respond soon. Take care, I know as we all do how nerve racking the waiting is. All my best.

Shiny

Dx 5/2007, IDC, 2cm, Grade 3, 1/16 nodes, ER-/PR-, HER2- Surgery Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): SIEA flap; Reconstruction (right): SIEA flap Chemotherapy Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel) Surgery Lumpectomy: Left; Lymph node removal: Underarm/Axillary
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Jul 23, 2009 04:47PM PT6 wrote:

I was first diagnosed with Stage 1 31 years ago. Recently, I had a mastectomy for DCIS in the opposite breast. Yep! 2 parathyroid adenomas (these are almost always benign) with elevated Ca++ levels removed in 2006.

Dx 4/10/2009, DCIS, Stage 0, Grade 3, 0/1 nodes, ER+/PR+, HER2-
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Jul 23, 2009 05:22PM Sig wrote:

Hi, I am curently dealing with high calcium level also. I have problem to adjust my calcium supplement. I was originally taking 1000 mg a day, then my calcium went up then stop the supplement for several weeks, calcium went back to normal. Afterward I started taking only 500 mg a day and every other day I was taking 1000mg/day. Then in april did another test and my calcium was high again. so stop again for a bit then start over again and now it is still high, so stop again. Did the parathyroid test and whole bunch of blood work and everything is normal except my calcium a bit high. So this could only be due to your calcium supplement that your are taking.

Sig

Dx 1/16/2007, IDC, 2cm, Stage IIB, Grade 2, 2/6 nodes, ER+/PR+, HER2+
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Jul 23, 2009 05:32PM Sassa wrote:

I had the same problem as Sig with my calcium supplement.  If I don't stop the calcium for several days before my bloodwork, my calcium levels are high.

 I forgot and took my calcium one time on the day of my blood draw.  I warned the nurse that I had taken my supplement and that the levels would be high (they were and the doctor didn't worry).

Dx 11/6/2006, IDC, 1cm, Stage IA, Grade 3, 0/9 nodes, ER-/PR-, HER2+
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Jul 24, 2009 12:00AM sandilee wrote:

 So sorry about your mom. It really seems like you have a lot on your plate right now.

On my last visit to my onc, he told me that the CBC from the week before showed high calcium. He suspected hyperparathyroidism and referred me to an endocrinologist. The endo found that my parathyroid hormone levels were high, so I went in for a scan which was positive, and I'm having one of my parathyroids out next week!  I have a 1.5 cm tumor that took over one of my parathyroid glands, which is constantly draining the calcium from my bones. After my surgery, the surgeon said that my bone density should continue to improve over the next ten years.

  My onc suspected hyperparathyroidism because I have osteoporosis.  My onc never said anything about possible bone mets-- I think that calcium levels that rise due to bone mets are in very late stages of the disease, and it's obvious that I'm not there.  It doesn't sound like you're there, either.    I did some internet research when I was going through this, too, and remember reading that while high calcium levels show up in late stage cancer with bone mets, bone mets rarely present that way. 

    BTW, my onc said that my blood calcium was not related to the calcium that I take as supplements.  Calcium  that shows up on a blood test is calcium that is pulled from the bones. I don't know how to explain the experiences of the two ladies before me, but I was taking 1200 mgs of calcium a day, and both docs assured me that this had nothing to do with the levels of calcium that showed up on the tests. Maybe the extra calcium is washed out of your system if it's not used rather than stored in the blood, I don't know. But they were right. I have a parathyroid tumor that I've seen on an ultrasound. 

 Hang in there- your results should be back soon, which should help you know what's going on.

   

    

Dx 11/2007, IDC, 1cm, Stage IA, Grade 2, 0/6 nodes, ER+/PR-, HER2- Hormonal Therapy 1/10/2008 Aromasin (exemestane) Dx 6/2011, IDC, mets Radiation Therapy 6/30/2011 Bone Hormonal Therapy 7/15/2011 Faslodex (fulvestrant) Hormonal Therapy 4/10/2015 Femara (letrozole) Targeted Therapy 4/20/2015 Ibrance (palbociclib) Chemotherapy 8/4/2015 Xeloda (capecitabine) Hormonal Therapy 3/11/2016 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Chemotherapy 10/13/2016 Doxil (doxorubicin) Chemotherapy 4/4/2018 Navelbine (vinorelbine) Hormonal Therapy 6/6/2018 Faslodex (fulvestrant) Targeted Therapy 6/6/2018 Verzenio Chemotherapy 4/23/2019 Carboplatin (Paraplatin), Gemzar (gemcitabine)
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Jul 24, 2009 05:45PM - edited Jul 24, 2009 05:58PM by sam52

Another one here! I also have hyperparathyroidism......am scheduled for surgery at the beginning of September.

I was referred to an endocrinologist as I had worsening osteoporosis.My blood tests revealed high serum calcium and high parathyroid hormone levels.The endo suggested stopping the calcium supplements for 2 months and the blood was retested; the calcium levels went back to normal, but the PTH stayed high. Yes, the osteoporosis is caused by the parathyroid adenoma  leeching calcium from the bones and depositing it in the  blood and urine.

There is a very informative website about parathyroid disease: www.parathyroid.com

I hope you will all keep posting as I would like for us to compare notes. It is interesting that there appears to be a link between parathyroid disease and bc.

Sandilee - hope all goes well next week. Check in here and let us know how things went.Are you having minimally invasive surgery? All the best to you.

EllenFitz.....I understand why you are worrying but I think high calcium from bone mets is when the disease is quite advanced; I am pretty sure there will be a more benign explanation for your raised calcium levels.Let us know the results of your PTH test.

dx Oct 2001 IDC 1.6cm, stage II, grade 3, 3/11 nodes, ER+/PR+, HER2-
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Jul 25, 2009 05:00PM EllenFitz wrote:

Thanks for all of the replies!  I don't have my PTH result back yet, but the retest of my calcium was normal after stopping the supplement for a week.   I did have a chance to talk to my onc briefly, and she said that hyperparathyroidism is more common in women with BC - though they don't know which way the causality works yet!  One more thing for us to watch out for.  I will let you know when I get the PTH results - but in the meantime, you have helped to put my mind to rest.   I appreciate all of you!

Dx 3/25/2004, IDC, 2cm, Stage IIB, Grade 2, 1/9 nodes, ER+/PR+, HER2-
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Jul 29, 2009 10:32AM jude14 wrote:

I had hyperparathyroidism with high calcium levels found out because of a kidney stone...(OUCH) and in less then a year found out I had breast cancer.  I had the one parathyroid removed and hopefully that will be all of that.  My calcium also goes up if I take supplements....jude14

Dx 7/18/2007, IDC, 1cm, Stage I, Grade 3, 0/6 nodes, ER+/PR+, HER2-
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Jul 29, 2009 07:19PM Member_of_the_Club wrote:

I had high blood calcium levels as well a few years before bc.  They went down when I stopped taking calcium supplements.  Like a lot of women here, I think there absolutely is a connection.

Dx 9/30/2004, IDC, 3cm, Stage IIB, Grade 2, 1/17 nodes, ER+/PR+, HER2-
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Aug 4, 2009 04:31AM sylviaexmouthuk wrote:

I was very interested in the discussion about a connection between breast cancer and hyperparathyroidism.

 In 2005 I was diagnosed with triple negative breast cancer (ER- PR- Her2-). At the same time as I was diagnosed with the breast cancer I was also diagnosed with hyperparathyroidism. This was picked up through elevated calcium in the blood.

I was told by my oncologist, consultant sugeon (also my endocronologist) that they would get me through my breast cancer, and then think about the hypeparathyroidism. In the meantime they advised me to have regular blood tests to monitor the calcium and parathyroid hormone level. For the breast cancer I had six months of chemo, mastectomy, removal of seven lymph nodes (only the sentinel node affected) and radiotherapy. There was no follow up treatment after this as drugs such as tamoxifen and arimidex are of no use in non-hormonal breast cancers.

To date I have had regular calcium and PTH blood tests. In February 2009 while having a blood test check up, I asked the nurse to measure my height and discovered that in three years since 2006 I had lost two inches off my height. I had a DEXA scan and was diagnosed with osteoporosis. I was told that treatment for osteoporosis (calcium, vit D and bisphosphonates) do not work for osteoporosis if you have hyperparathyroidism.

A few months ago I had a special test to look at the four parathyroid glands and was told that I had one gland enlarged with an adenoma. This adenoma is on my lower right parathyroid gland and I thought immediately there was a connection with the right breast cancer and that the link was calcium. I have now read research that appears to equate breast cancer with hyperparathyroidism, although the experts cannot decide which comes first. I feel that it is the hyperparathyroidism causing the breast cancer, because the consultant cannot tell you how long you have had the hyperparathyroidism. Research also suggests that the cause of both may be mass Xrays carried out on children in the 1950s. However, this cannot explain the cases in younger women.

I have been advised to have surgery for removal of the adenoma, but cannot decide because of the possible side effects. It seems like a no-win situation. There are pros and cons for surgery and for not having surgery. I have read a lot about malignancies following parathyroidectomy.

I would love to hear your comments.

Let your food be your medicine and your medicine be your food - Hippocrates B.C. 390 Preadjuvant chemo 3 months epirubicin, cyclophosphamide, 3 months docetaxel. Mastectomy RB Sentinel node pos Radiotherapy 3 weeks + boosters Dx 6/20/2005, IDC, 6cm+, Grade 3, 1/7 nodes, ER-/PR-, HER2- Chemotherapy 10/31/2005 Cytoxan (cyclophosphamide), Ellence (epirubicin), Taxotere (docetaxel) Surgery 5/16/2006 Lymph node removal: Right; Mastectomy: Right Radiation Therapy 6/14/2006 Breast
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Aug 4, 2009 05:15AM sam52 wrote:

Sylvia...I guess you are in the UK like me?

I am in sort of the same position. I am actually booked for surgery in a couple of months time for the removal of a parathyroid adenoma on the lower left lobe, seen by U/S and Sestamibi scan.(My bc was on the right side, though).Like you, I am scared of possible complications. What have you read about malignancies following parathyroidectomy? Did you see my post higher up referring to the US website on parathyoid disease? IT does not seem to equate with what they are offering or telling us here in UK.

Sam

dx Oct 2001 IDC 1.6cm, stage II, grade 3, 3/11 nodes, ER+/PR+, HER2-
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Aug 4, 2009 06:11AM Ainm wrote:

I was diagnosed with BC last Jan (aged 45), had a mastectomy LB, chemo and radiotherapy. I finished treatment last wednesday and had a visit with my oncologist to be put on tamoxifen. Just as I was leaving his office, (I was actually paying his receptionist) he popped his head around his door and said - by the way get your bloods done before you come in next time. Your blood calcium levels were up on your last two blood tests and I want to see if it's connected to hypercalcemia - I may have to have your parathyroid glands checked.  I didn't have an opportunity to question him about it and my next visit it at the end of this month. I would appreciate any hints as to what I should ask him about it. I am not and have not been taking any supplements except for 50mg B6 daily which is suppose to be helping with peripheral neuropathy. From what I'm reading here it appears there is some connection between BC and hyperparathyroidism. I am also way, way overweight - don't know if that could be a factor. Most of what I have read on the internet, apart from this thread, seems to connect hypercalcemia with bone mets which worried me, so obviously I would appreciate any info from those of you who have dealt with this. Thank You.

Ainm XX Dx 1/16/2009, DCIS/IDC, Left, 4cm, Stage IIIA, Grade 2, 2/16 nodes, ER+/PR+, HER2- Surgery 1/18/2009 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left; Reconstruction (left): Latissimus dorsi flap, Nipple reconstruction, Nipple tattoo; Reconstruction (right) Chemotherapy 2/23/2009 AC + T (Taxol) Radiation Therapy 7/8/2009 Chest wall Hormonal Therapy 7/28/2009 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy 8/16/2012 Arimidex (anastrozole)
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Aug 4, 2009 07:05AM Rufusmama wrote:

Sounds familiar...I was diagnosed with hyperparathyroidism (high PTH and high calcium levels) a few years ago. Now dealing with BC.  Go figure.  Perhaps the FDA (and/or other international health authorities) should examine whether or not these reports have anything to do with what is currently in our food supply.  I've found that when I read food labels there is some form of soy appearing in about 60-70% of the labels....even on white bread.  I don't remember seeing this much soy in our foods 10 years ago....Wow that soy industry is booming. 

I've heard of people experiencing hyperparathyoidism when consuming too much soy protein and other soy products (also hypothyroidism).  My levels came back down to normal after I went on a soy free diet for 6 months and my symptoms disappeared; however, now I have had chemo and a lumpectomy for BC.  I now eat very limited amounts of soy.

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Aug 4, 2009 08:55PM ICanDoThis wrote:

Well, I'm off to a consult with an endocrinologist for hyperparathyroidism tomorrow.

Talk about mushy middles - I'm osteoporotic, and have lots of symptoms, like fatigue, joint and bone pain, depression and anxiety, fatigue, with a parathyroid score just under 100, but a calcium that goes up and down like a yoyo.

The first endocrinologist I saw sad - no 12, so problem. But, I have all these symptoms!

And I'm going to ask about the BC link thing - like - am I going to get it AGAIN!

Sue - Proud to be Krista's Mom Dx 12/28/2007, IDC, Left, 1cm, Stage IA, Grade 1, 0/3 nodes, ER+/PR+, HER2- (FISH)
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Aug 8, 2009 02:54AM sylviaexmouthuk wrote:

Sam52

Yes, I am in the UK and I am in Devon. I was interested to know that you are actually booked for surgery in a couple of months time for the removal of a parathyroid adenoma. Will you go ahead with the surgery? I had the same Sestamibi scan and was advised to have surgery in June, but have delayed it until after the summer. I am still reluctant to have the surgery.

Are you going to have full surgery or the minimal invasive one, such as is available with Dr McLaren privately or on the NHS (see his web site). My endocrinologist/breast cancer consultant surgeon, has told me that she does not do the minimal invasive surgery. She told me she prefers to do the full surgery so that she can have a look at the three other glands to make sure all is OK with them. She also said that the full surgery is better because it will enable her to see if there is another adenoma growing behind the one she is removing. She also said that once the adenoma was removed the other three glands, which are dormant, will spring into action and that within days the calcium and parathyroid levels will be normal and that the osteoporosis will not progress any further. I am concerned that the other glands may not spring into action and that I shall then have hypoparathyroidism, which I think is just as bad as the hyperparathyroidism.

I am also concerned about the possible consequences of surgery, especially damage to the vocal chords, which will affect your voice and make it husky. You have to sign for this possible complication on your consent form.

I have read the article about parathyroid disease on the US website. I think that in the UK the hospitals appear to be in the dark about hyperparathyroidism and breast cancer. I have given copies of a research paper to my oncologist, breast cancer surgeon/endocrinologist, GP and a couple of friends who are nurses. None of them appeared to know about this connection. The paper was "Hyperparathyroidism and Subsequent Incidence of Breast Cancer".

I have been told that primary hyperparathyroidism is rare and that I am the only breast cancer patient at the hospital that also has hyperparathyroidism. However, I think this is because the women have not been tested. Mine was found by accident because of testing for elevated blood calcium. My GP also told me that he has never treated anyone for hyperparathyroidism. This disease needs to be hugely publicised and mass routine blood tests taken, especially in the light of this connection with breast cancer. I do not think hyperparathyroidism is as rare as I am told.

The article I have read about malignancy after parathyroidectomy is entitled "The Association Between Primary Hyperparathyroidism and Malignancy: Nationwide Cohort Analysis on Cancer Incidence after Parathyroidectomy" (2007).

How is your osteoporosis now? Are you having any treatment? I have been told the treatment for osteoporosis does not work if you have hyperparathyroidism. The osteoporosis factor is the one thing that is pushing me towards having the surgery, as it is supposed to stop further deterioration. However, I am wondering if this is true. Also pushing me towards surgery is the thought that if my hyperparathyroidism has caused my breast cancer is it likely to cause cancer in the other breast or to cause cancer to spread or recur?

There are a whole list of complications from hyperparathyroidism. They are kidney stones, corneal calcification, fractures and broken bones, pancreatitus, peptic ulcer, kidney damage.

The aim of treatment for hyperparathyroidism is to lower the calcium level. What kind of levels do you have? These levels fluctuate. My highest have been 3.06 and lowest 2.52. (The normal range is 2.05 to 2.55). My parathyroid hormone level has ranged between 21.6 and 16.3. The normal range appears to be 1.69 to 6.9.

Hope to hear from you with your comments.

Let your food be your medicine and your medicine be your food - Hippocrates B.C. 390 Preadjuvant chemo 3 months epirubicin, cyclophosphamide, 3 months docetaxel. Mastectomy RB Sentinel node pos Radiotherapy 3 weeks + boosters Dx 6/20/2005, IDC, 6cm+, Grade 3, 1/7 nodes, ER-/PR-, HER2- Chemotherapy 10/31/2005 Cytoxan (cyclophosphamide), Ellence (epirubicin), Taxotere (docetaxel) Surgery 5/16/2006 Lymph node removal: Right; Mastectomy: Right Radiation Therapy 6/14/2006 Breast
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Aug 8, 2009 12:29PM jude14 wrote:

Hi Sylviaexmou....I had a parathryoid gland removed about 2 years before my breast cancer.  The surgery was a breeze was not the minimally invasive one and there was no pain after.  My voice was fine also.  Get a good surgeon that knows what they are doing and you will be fine.  I felt so much better after mine until the big BC hit...Now the AI's are doing a number on me, joints hurt all over my body and the weight gain has been horrible.  I had kidney stones which was how they found my parathyroid problem.  I would have jumped for the surgery to avoid that happening again.  Like I said I read all the things you have read and I was scared to death of the surgery but honestly it was not a bad surgery as far as surgery goes.  I stayed 23 hours in the hospital and had no problems at all and my calcium levels were in the normal range immediately following surgery.  Good Luck I hope it works out....jude14

Dx 7/18/2007, IDC, 1cm, Stage I, Grade 3, 0/6 nodes, ER+/PR+, HER2-
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Aug 8, 2009 01:28PM makingway wrote:

I need to know what to ask the doctor to put on my prescription. I told the first oncologist I wanted my hormone levels checked. She put estradiol on the prescription. The 2nd oncologist I went to put estrogen on the prescription. I need to know if it has to be specific. I want to know my Progesterone levels and PTH levels as well as all the estrogen i.e., estrone, estradiol and estriol. Can somebody please advise. I have an appt. Monday with my general surgeon. She's only interested in getting me started on chemo, but I'm going to try and get her to write a prescription. If she wont, I'll go back to the 2nd oncologist I saw. He seemed more helpful.

Visit my website for helpful tips when using cold caps:penguincoldcap.wix.com/help Dx 3/2/2009, ILC, 4cm, Stage IIB, Grade 2, 1/19 nodes, ER+/PR+, HER2-
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Aug 10, 2009 05:40AM sylviaexmouthuk wrote:

Dear Jude14

Thank you for your information about your parathyroidectomy. It is reassuring to have some positive comments, and I am glad that all went well.

What appears to be of concern is that two years later you developed breast cancer. I have read about malignancies after parathyroidectomy, which makes me reluctant to have the surgery in case I develop breast cancer in the healthy breast, or have recurrence or spread from the cancerous one I had removed.

I live in England (UK) and I feel that the US is ahead of us in cancer treatment. However, you seem to be heading for the same standard breast cancer treatment as over here. With your type of hormonal cancer the treatment here would be lumpectomy if the tumour is small and no lymph nodes are affected, followed by radiotherapy and then drugs such as tamoxifen and/or arimidex to keep oestrogen under control.

Since you were diagnosed in 2007, it sounds as though you must have been taking some kind of drugs prior to any other treatment.

I know from friends that tamoxifen does have some nasty side effects. It appears that it does make you put on weight and affects your bones.

It is best to sort it all out with your medical team. I would be interested to know what your consultant thinks about a link between hyperparathyroidism and breast cancer. 

Good luck!

Let your food be your medicine and your medicine be your food - Hippocrates B.C. 390 Preadjuvant chemo 3 months epirubicin, cyclophosphamide, 3 months docetaxel. Mastectomy RB Sentinel node pos Radiotherapy 3 weeks + boosters Dx 6/20/2005, IDC, 6cm+, Grade 3, 1/7 nodes, ER-/PR-, HER2- Chemotherapy 10/31/2005 Cytoxan (cyclophosphamide), Ellence (epirubicin), Taxotere (docetaxel) Surgery 5/16/2006 Lymph node removal: Right; Mastectomy: Right Radiation Therapy 6/14/2006 Breast
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Aug 10, 2009 11:52AM jude14 wrote:

sylviaexmou.....I also had to drink 2 doses of radioactive iodine over the years for a hyper thyroid and I was told by the doctor this could have caused the hyperparathyroid problem, the adenoma on the parathyroid.  I was also told the radioactive iodine could have caused or be a contributing factor to the cancer.  I think they really do not know what causes breast cancer and they just guess.  I know people who did everything right and came up with bc and some that should have it and never get the stuff.  I know people who did chemo and rads and still had a recurrence and people who did not and are fine still.  I myself think it is a matter of luck of the draw.  I guess chemo would help to a degree but it is not a guarantee just like a masectomy versus a lumpectumy is not a 100% guarantee.  I just wish they could find out what really cause bc and any cancer for that matter and find a cure.  I know with the hyperparathyroid though I was more then happy to have the gland removed instead of having the kidney stones as they HURT....Good luck in your decision and I know you will not be sorry you had it removed......jude14

Dx 7/18/2007, IDC, 1cm, Stage I, Grade 3, 0/6 nodes, ER+/PR+, HER2-
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Aug 26, 2009 07:47AM barbe1958 wrote:

I can never believe how this site never fails to help!

I was just at my specialist yesterday who took out my rather large kidney stone a month ago. Now I have to get my calcium levels checked as I am still weak. I have a followup appointment at the end of September and now I have the right questions to ask!

I had another doc send my doc a report that said "she asks interesting, intelligent questions"....thanks to bco!

Dx 12/10/2008, IDC: Papillary, Left, 1cm, Stage IB, 2/5 nodes, ER+/PR+, HER2- Surgery 12/15/2008 Lymph node removal: Left, Sentinel; Mastectomy: Left, Right Dx 2/4/2016, IDC: Papillary, Left, Stage IV, ER+/PR+, HER2- Hormonal Therapy 2/10/2016 Arimidex (anastrozole) Radiation Therapy 2/16/2016 Whole-breast: Lymph nodes, Chest wall
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Aug 30, 2009 04:51PM Ainm wrote:

Was back with my onc 4 weeks after he told me I had high blood calcium levels and it appears that in my most recent blood test everything was normal!!! Gosh and I spent 4 weeks worrying about what was going on!!  Best of luck to anyone else who is going through an uncertain spell.

Ainm XX Dx 1/16/2009, DCIS/IDC, Left, 4cm, Stage IIIA, Grade 2, 2/16 nodes, ER+/PR+, HER2- Surgery 1/18/2009 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left; Reconstruction (left): Latissimus dorsi flap, Nipple reconstruction, Nipple tattoo; Reconstruction (right) Chemotherapy 2/23/2009 AC + T (Taxol) Radiation Therapy 7/8/2009 Chest wall Hormonal Therapy 7/28/2009 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy 8/16/2012 Arimidex (anastrozole)
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Aug 30, 2009 06:26PM - edited Aug 30, 2009 06:48PM by sandilee

In case anyone else is concerned about a parathyroidectomy, I wanted to let you know how I'm doing after having two parathyroid glands removed a couple of weeks ago.

 The surgery was a piece of cake.   I had the minimally invasive surgery and now have a faint scar about an inch long on the right side of my neck. After my surgery, my levels (calcium and pth) normalized immediately.  I'm supposed to go in for calcium level checks in three months and then again in six months to make sure everything continues to work optimally. The surgeon recommended 2000 units of calcium, and 2000 units of vitamin D3 daily.

 What completely surprised me is that the joint pains I was experiencing before my surgery have completely disappeared.  I feel better than normal.Laughing  I have no idea how long I've had hyperparathyroidism, or if it came on before or after my bc diagnosis in '07, although the adenoma was over a centimeter long, so it could have been there awhile. My problem gland was on the right side- same as my bc.  I would recommend that any woman get this surgery if she has an adenoma- especially if she already has bone density issues, as I have.  The surgeon says that my bones now should begin to build up and increase density over the next 10 years.

  My only caution would be to get a very skilled surgeon. The neck has a lot of nerves as well as veins, and you need an expert in parathyroid disease. I also would NOT get the regular surgery when the minimally invasive surgery is completely effective and less damaging or risky. There is no benefit to the full-on exploratory surgery in 2009-- everything can be seen on the ultrasound an in the image guided surgery. I went to UCLA and the entire experience was outstanding.

  Also, I want to mention something many forget, and that is that by the time breast cancer is found, it has been with us awhile-- probably several years. Therefore, I don't think you can draw any conclusions about  having parathyroid surgery and then discovering BC a year or two later as a causal one between the BC and the surgery, per se.   I read the article that Sylvia posted, and take away from that a connection between parathyroid disease and BC, not parathyroid surgery.   There are a lot of possible connections between the two- low vit. D3, exposure to toxins, etc, and both BC and hyperparathyroidism may be caused by the same endocrine or other imbalance within our bodies. I'm very interested in reading about any connections that might be found, however, that might point to a cause of both issues.

   Just want to reassure. Don't be afraid of the parathyroid surgery- it's a win, win. Just be sure to do your homework and go to an expert thryoid/parathyroid surgeon--not a generalist. 

Dx 11/2007, IDC, 1cm, Stage IA, Grade 2, 0/6 nodes, ER+/PR-, HER2- Hormonal Therapy 1/10/2008 Aromasin (exemestane) Dx 6/2011, IDC, mets Radiation Therapy 6/30/2011 Bone Hormonal Therapy 7/15/2011 Faslodex (fulvestrant) Hormonal Therapy 4/10/2015 Femara (letrozole) Targeted Therapy 4/20/2015 Ibrance (palbociclib) Chemotherapy 8/4/2015 Xeloda (capecitabine) Hormonal Therapy 3/11/2016 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Chemotherapy 10/13/2016 Doxil (doxorubicin) Chemotherapy 4/4/2018 Navelbine (vinorelbine) Hormonal Therapy 6/6/2018 Faslodex (fulvestrant) Targeted Therapy 6/6/2018 Verzenio Chemotherapy 4/23/2019 Carboplatin (Paraplatin), Gemzar (gemcitabine)
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Sep 1, 2009 03:59AM sylviaexmouthuk wrote:

I was very interested to learn about Sandilee's successful parathyroidectomy. I am glad that everything went well for you. Unfortunately my consultant surgeon does only the full surgery. I have every confidence in her, as she was also my consultant breast surgeon. I would be apprehensive about having the minimal invasive surgery done in some other part of the UK by someone I do not know. My own consultant has told me that although, after the scans, it has been confirmed that I have one large adenoma on the lower right gland, she prefers to do the full operation to make sure there are no problems with the other three and that there is nothing growing behind the one she is going to remove. Would you go ahead if you were me?

Did you come straight out of the hospital straight after the surgery? I ask this because I have no wish to stay in hospital.

Had you developed osteoporosis due to your hyperparathyroidism and has your consultant now told you it will not progress any further as a result of the surgery?

I was glad to know that your calcium and PTH levels normalised immediately, because no one wants to go from hyper to hypo.

I was interested to read about the levels of calcium and units of vitamin D3 recommended by your surgeon as a daily dose. While waiting to make up my own mind what to do I have been taking 1200 units of vitamin D3 plus some calcium, which I have been trying to obtain mainly through food. I had a vitamin D test and was congratulated on the excellent level of both D3 (a little sunshine and supplements) as well as D2 (obtainable through food). You need to take magnesium supplements with your calcium, as the body cannot absorb calcium without magnesium, You have to take half the dose of magnesium to the dose of calcium.

I have read that calcium carbonate needs to be taken with food, whilst calcium citrate can be taken on its own and is more easily absorbed. I have also read that you should be taking some vitamin K to strengthen your bones.

Has your consultant also prescribed bisphosphonates, such as Fosamax? Osteoporosis here is treated with Fosamax, about which I have read a lot of negative comments. I also know people who take it and they say it makes them feel very unwell.

With reference to hyperparathyroidism and the development of breast cancer, it seems to be a chicken and egg situation. What surprises me is that the medical establishment does not seem that interested. I agree with you that cancer is usually in the body a long time before it presents itself as a tumour, so that you cannot assume that a parathyroidectomy has caused breast cancer which later presents itself.

I do feel, after all my research, and especially after joining this forum, that there appears to be too many cases of breast cancer with hyperparathyroidism for it to be a coincidence. The problem is to know which disease causes which, or is there a third cause, for example mass x-rays in childhood, as one research paper suggests. I have recently read that malignant or benign tumours can upset the entire endocrine system, causing too little or too much of a hormone.

I feel that hyperparathyroidism may cause breast cancer and that it is somehow connected to calcium. However, it could also be that it is the breast cancer that has caused the hyperparathyroidism, and that again the connection is calcium. I was diagnosed with breast cancer and hyperparathyroidism at the same time.

I noticed that Sandilee had a hormonal tumour (ER+) that, unusually, was PR-. I have not noticed many such cases. I was diagnosed with triple negative breast cancer in June 2005 (ER-/PR-, HER2-). This is supposed to be the worst possible diagnosis. If you read the triple negative forum you will see that many of the women say that their tumour appeared as if from nowhere and grew very quickly. This was certainly my case, so I cannot say how long it was there. There is no treatment for triple negatives after the standard chemo, surgery and radiotherapy. Triple negatives do not get as much attention as hormonal tumours, hereditary ones or HER2 ones.

I found your posting most interesting and encouraging. It makes me wonder what decision to make on October 8, when I shall see my consultant surgeon and endocrinologist. October looks like an anxiety-prone month as on October 23 I shall see the same consultant for my 6 monthly breast cancer check-up.

All the best to Sandilee. I am a retired High School teacher so we have that in common.

Let your food be your medicine and your medicine be your food - Hippocrates B.C. 390 Preadjuvant chemo 3 months epirubicin, cyclophosphamide, 3 months docetaxel. Mastectomy RB Sentinel node pos Radiotherapy 3 weeks + boosters Dx 6/20/2005, IDC, 6cm+, Grade 3, 1/7 nodes, ER-/PR-, HER2- Chemotherapy 10/31/2005 Cytoxan (cyclophosphamide), Ellence (epirubicin), Taxotere (docetaxel) Surgery 5/16/2006 Lymph node removal: Right; Mastectomy: Right Radiation Therapy 6/14/2006 Breast
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Sep 1, 2009 06:39AM sam52 wrote:

Sylvia.....Sorry, I have been away so only just seen your PM. I will reply ASAP.

I am very nervous about having the minimally-invasive surgery with an inexperienced surgeon - I think this may be more dangerous than having the classical surgey with someone who knows what they are doing.I am in a total quandry also.

BTW ....I am also a teacher; do you think this is part of the equation also,lol?!

Sandilee - thanks for your post; good to hear you're doing great.

Sam

dx Oct 2001 IDC 1.6cm, stage II, grade 3, 3/11 nodes, ER+/PR+, HER2-
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Sep 1, 2009 06:49AM barbe1958 wrote:

Sam, I am getting all check out over the next couple of months and I know that I would rather go with a surgeon I trust. I've already had surgery on my thyroid which in included the huge substernal goiter so I do know some of the dangers. My scar is minimal and right at the necklace line on my throat. It is the prettiest scar I have on my body and as I age, the wrinkles are gentle hiding it!  Laughing The surgeon even had to do an emergency extra stitch when I started to bleed-out in the hospital bed.

With the mess my body is, I'm not too worried about yet another scar as they've already been in there once!

Dx 12/10/2008, IDC: Papillary, Left, 1cm, Stage IB, 2/5 nodes, ER+/PR+, HER2- Surgery 12/15/2008 Lymph node removal: Left, Sentinel; Mastectomy: Left, Right Dx 2/4/2016, IDC: Papillary, Left, Stage IV, ER+/PR+, HER2- Hormonal Therapy 2/10/2016 Arimidex (anastrozole) Radiation Therapy 2/16/2016 Whole-breast: Lymph nodes, Chest wall
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Sep 22, 2009 04:47PM - edited Sep 22, 2009 05:09PM by PaleRider

Hi-

This is my first post to this forum and I am posting because this thread is the first thing that I have found online that encourages me that the high calcium levels (all three in the neighborhood of 11 mg/dL - not horrendously high) reported on 3 recent blood tests combined with "high end of normal" PTH levels are more likely hyperparathyroidism and less likely a bone met.  I admit I am having a "freak-out" day today (and should probably take my onc's advice about those kinds of days and stay off the Internet).

I had neoadjuvant chemo, followed by lumpectomy and axillary node removal in June that was highly successful - tumor fully resolved, only micrometases left in 3 nodes.  I am not even done with radiation - the last session will be this coming Monday.  Both surgeon and onc believed due to strong response to chemo, recurrence risk for me was around 10% - not bad.  But now this.......4 sessions from finishing radiation - so very not fair!!!!!

Onc is ordering a bone scan to be on the safe side and I am doing the 24-urine collection test today (YAY) and he is referring me to an endocrinologist as well.  He indicated that my "high end of normal" PTH levels rather than low ones are a good sign that it is hyperparathyroid issues rather than a bone met issue.  I have phoned in more questions about this, but my question to all of you is whether you all also had higher than average PTH.  In the meantime, I'll get my testing done and take it as it comes and just like before, make decisions about treatment when I know what particular beast I'm dealing with.

And thanks - I'm so glad I found this forum.   

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Oct 3, 2009 11:28AM mkl48 wrote:

Hi,

How high was the calcium and what is normal for your lab? It sometimes goes down on the next test. Ruth

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Oct 3, 2009 08:59PM - edited Oct 3, 2009 09:05PM by sandilee

Hi everyone.  Sorry I haven't been back to post lately.  Time really does fly. I wanted to answer some questions that sylvia asked, if I can.

I can certainly understand not wanting to be operated on by someone you don't know or trust. Go with your gut on this one. If you like your surgeon and she has done many parathyroid surgeries, and you don't have access to an expert in the mini surgery, then it makes sense to go with her.I am lucky to live in Los Angeles where there is an expert nearby, who does nothing but thyroid and mini parathyroid surgeries daily. In the UK, it may be very different.

 Yes, both my onc and my parathyroid surgeon said that my osteoporosis was most likely caused by my hyperparathyroidism, and that my bones should continue to grow over the next "ten years."  I haven't had a bone scan since my PT surgery, so I don't know, but the Aromasin I'm taking won't be helping, I know that.  The recommended levels of calcium and D (2000) surprised me, but after reading a lot about it, I understand why. I've been feeling very well since the surgery, and try to take all my supplements, but sometimes I forget the evening dose.  I do walk my dog for an hour and a half in the sunshine everyday, so I hope that helps.

  My oncologist wanted me to take Boniva for my osteoporosis last year, before I was diagnosed with hyperparathyroidism. I told him no  after trying one month's worth. It really made me ill. I'm glad that I didn't continue, because apparently if one has hyperparathyriodism, biophosphonates won't help anyway.  I feel very uncomfortable with the way that they work, so I still don't want them. I'll continue to eat well, exercise, and just hope that my bones regrow now that they don't have the calcium leached out of them from the PTH hormones.

 My PTH hormones were in the 98 range- which is fairly high.  After surgery, they were normal, as were my calcium levels. 

BTW, calcium levels can go up and down, but if your parathyroid hormone levels are up, that is an indication in itself that you could have an adenoma. Just because your calcium levels go back to normal after one test doesn't mean they really are normal. I had two apparently normal calcium tests after my BC before this last one that alerted my onc to possible hyperparathyroidism, and I've had it for a few years, apparently. Long enough for a tumor to grow to 1.5 cm. The PTH hormone is key, so I'd definitely have it tested (it's just a simple blood test) if you ever have a high calcium level in your CBC.

 Good luck to you, sylvia, with the decisions you have to make this month! 

I'd say go with the surgery.  Why have a tumor that doesn't belong there and is doing bad things to your body? 

   

   

Dx 11/2007, IDC, 1cm, Stage IA, Grade 2, 0/6 nodes, ER+/PR-, HER2- Hormonal Therapy 1/10/2008 Aromasin (exemestane) Dx 6/2011, IDC, mets Radiation Therapy 6/30/2011 Bone Hormonal Therapy 7/15/2011 Faslodex (fulvestrant) Hormonal Therapy 4/10/2015 Femara (letrozole) Targeted Therapy 4/20/2015 Ibrance (palbociclib) Chemotherapy 8/4/2015 Xeloda (capecitabine) Hormonal Therapy 3/11/2016 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Chemotherapy 10/13/2016 Doxil (doxorubicin) Chemotherapy 4/4/2018 Navelbine (vinorelbine) Hormonal Therapy 6/6/2018 Faslodex (fulvestrant) Targeted Therapy 6/6/2018 Verzenio Chemotherapy 4/23/2019 Carboplatin (Paraplatin), Gemzar (gemcitabine)
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Oct 6, 2009 05:28AM sylviaexmouthuk wrote:

Hello Sandilee
Thank you very much for all the information that you have just posted.
I was glad to know that everything is going well for you after your parathyroid surgery.
I agree that hyperparathyroidism is the most likely cause of osteoporosis in women suffering from hyperparathyroidism. I also think that a lot of women who have been diagnosed with osteoporosis and told it is because of lack of oestrogen at menopause or the ageing process, could well have hyperparathyroidism, and I would advise all women with osteoporosis, with or without breast cancer, to get their parathyroid hormone level tested through a blood test, to find out if it is elevated. I also remain convinced that there is a connection between breast cancer and hyperparathyroidism. In England thyroid hormone level testing is part of a routine blood test, but parathyroid hormone level is not. In fact, my GP told me that I was the only person in all his years as a doctor to ask to have my PTH level checked. In fact, whenever I asked for it, he put it down as thyroid level testing!
I started a forum this year for Breast Cancer and Hyperparathyroidism, but have noticed that nobody has written into it. I hope to hear comments from those of you who have been diagnosed with breast cancer and hyperparathyroidism. At the same time I have noticed that there have been 30 postings for elevated calcium. I would be interested to know out of the 30 how many of you have, or have had, both breast cancer and hyperparathyroidism. How many of you have been told that your high calcium level is due to hyperparathyroidism? How many of you have been told that it has been caused by something else and what is that something else? The only other cause of high calcium level of which I am aware is spread to the bones of a cancerous tumour.
Sandilee, whatever decision I make in the very near future, I shall stay with my own consultant surgeon, rather than go with a complete stranger, even if that means that I have to have the full surgery. I sometimes think I shall leave things as they are, since I am not aware of feeling unwell due to my hyperparathyroidism. Sometimes I think that I must have the surgery because of the osteoporosis that the hyperparathyroidism is causing. With reference to osteoporosis, I do urge caution about not accepting the conventional treatment for it, calcium, vitamin D, and bisphosphonates, such as Fosamax, since they do not work if you have hyperparathyroidism. In this country of England, I feel that there is a lack of joined-up thinking, at least in the NHS. My GP had his pen at the ready to prescribe Fosamax, even though he knew that I had hyperparathyroidism. I think that vitamin D alone may help with the hyperparathyroidism, but I do not have any proof. Even if I have the surgery, and everything reverts to normal, I shall take vitamin D and calcium supplements, but I do not intend to take any bisphosphonates.
I agree with Sandilee that calcium levels can go up and down, and that a normal calcium reading does not mean that your hyperparathyroidism has corrected itself. My consultant told me that variations in calcium blood level readings depend on a person's degree of hydration or dehydration at the time of testing. In this country, all the emphasis is, however, put on your blood calcium reading. At diagnosis, back in 2005, I was told to keep a check on my calcium levels. At the hospital nobody told me to keep a check on the parathyroid hormone level. At the time no one was able to tell me how long I had had the hyperparathyroidism, and no one has been able to tell me since. I cannot make up my mind whether the hyperparathyroidism cause my breast cancer, or whether the cancer growing in my breast caused the hyperparathyroidism. I do not believe the two were coincidental.
I think it would be a good idea for those using the forum for whatever reason, be it triple negatives, elevated calcium, hyperparathyroidism, or breast cancer in general, to consult all forums, so that there is a lapping over and an interconnection, because all these factors do seem to be interconnected.
To Sandilee, at the moment of writing I feel that I am probably going to go with the surgery, primarily because of the osteoporosis. As you say, why have an adenoma on one of my parathyroid glands, that should not be there. In my case, it is on the lower right gland, and I feel again that it is not a coincidence that my triple negative breast cancer was in my right breast. It just seems to me that too many of the pieces of the jigsaw puzzle fit together.
By the way, to all those women, writing on the triple negative forum, just keep your spirits up. I had a very large tumour removed by mastectomy in 2006, after six months of chemotherapy and then post-surgery three weeks of radiotherapy. I am still alive to tell the tale, after four years, three months and sixteen days!
Regards to all.

Let your food be your medicine and your medicine be your food - Hippocrates B.C. 390 Preadjuvant chemo 3 months epirubicin, cyclophosphamide, 3 months docetaxel. Mastectomy RB Sentinel node pos Radiotherapy 3 weeks + boosters Dx 6/20/2005, IDC, 6cm+, Grade 3, 1/7 nodes, ER-/PR-, HER2- Chemotherapy 10/31/2005 Cytoxan (cyclophosphamide), Ellence (epirubicin), Taxotere (docetaxel) Surgery 5/16/2006 Lymph node removal: Right; Mastectomy: Right Radiation Therapy 6/14/2006 Breast

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