Hello Yoyo30

I had a lumpectomy and axillary lymphnode clearance in May followed by 20 sessions of radiotherapy. I too was recommended to take the bisphosphonate alendronic acid but decided to reject it because I have digestive issues and feared the possible side effect of taking yet another tablet along with Letrozole which initially gave me indigestion and stomach pain. The offer of a bisphosphonate via injection also did not appeal because my dentist thought this carries more risk to the jawbone than the oral tablet...

After a dexa scan which showed osteoporosis in the left hip (score -2.6) but none in the spine I asked my GP for a blood test for calcium and vitamin D3. My results were normal so I am concentrating on trying to ensure I have a calcium rich diet and food containing vitamin D3. This is my personal decision because I am 81 and do not want to jeopardise probable dental treatment in the future, even though my teeth are in good condition at the moment.

I understand that I am taking a risk by refusing this treatment and I am sorry that I cannot be more helpful. Many people have no issues when taking this drug but it has to be something you feel confident in accepting. Perhaps your rheumatologist can give you some reassurance but finally it is just a matter of choice.

Hi afd, thankyou for your reply. 
I havnt spoke to rheumatologist yet, my appointment is in a couple of months time. My GP requested blood tests & they have been done just waiting on the results . I too have stomach problems  and it has already been suggested the IV form of medication, I think I am just as scared of the thought of this as I was when I received the  cancer diagnosis. It’s effecting my sleep, the thought of my teeth becoming loose & having mouth problems. I wake during the night and the first thing that comes into my head is this then I can’t get back to sleep. I keep thinking that if I don’t take the letrozole then the osteoporosis won’t worsen as quickly. Then I think do I take the letrozole and not the bisophonate and risk breaking bones, which I consider better than loose teeth , it’s a constant battle in my head . I am 57 .

Hello, Yoyo

I fully understand your dilemma concerning the osteoporosis. Have you found out your score on the dexa scan? If not, I would certainly ask for it. At -2.6 in the left hip I did not think it was serious enough to warrant the risk associated with a bisphosphonate. Osteoporosis is diagnosed at -2.5 and above and since I have never broken a bone and hope to avoid doing so in the future despite having difficulty with walking due to fibromyalgia I decided to decline this medication. My oncologist pointed out that the thinning and porosity of the bones could make cancer cells more liable to invade their structure and warned of the possibility of breakage. When I asked my GP if bone thinning and worsening of cholesterol were inevitable when taking Letrozole he said they would not necessarily happen. I think we are given the worst possible scenario because the medical establishment are duty bound to spell out the possible side effects. On balance I think Letrozole is necessary to keep cancer at bay so I shall persist with it (given the spread to the lymphnodes and dubious clearance factor in the breast) but you must judge whether you can omit it in your case.

Don't lose sleep over this. Just weigh up the pros and cons and when you have come to a decision you will feel less stressed. Wishing you all the best.

Anne 

Thankyou for your response Anne

I don’t know my score yet, I only know what my consultant radiographer told me . I had a call with her end of July so she could discharge me from radiotherapy . During the call I asked her if there was any news of my dexa scan that I’d had in May as I hadn’t heard anything. She checked my record & said that I was recording on osteoporosis chart & that they were recommending bisophanates , calcium & vitamin D. She  old see on my records that I already have Barrett’s oesophagus & said that the tablets would not be good for me & IV would be better & that she would get in touch with my oncologist to refer me to rheumatology. I now have that appointment & waiting to see them . I had a letter to see my GP& he arranged blood tests , I’ve looked on my NHS app today & can see the results of the blood test are back & they all look fine . I feel like this small lump has turned my life upside down & it’s not going away , just when you start to feel a bit better you get another hurdle to climb .
Thankyou for taking the time to respond  x 

Hi Anne

I don’t know  what my score is yet. My radiotherapy consultant told me that she could see my dexa scan result when she discharged me from radiotherapy . I had the scan done in May & hadn’t heard anything back from it & my oncologist 6 month check up isn’t till November . So she said she was going to get in touch with him as the dexa scan showed osteoporosis & they were recommending bisophonates , calcium & vitamin D . But I have Barrett’s oesophagus so she said that it would mean I needed the IV method rather than tablets . I saw mg GP who requested blood tests & I can see on the NHS app that the result all seem fine but I havnt had that confirmed by the GP yet . I feel it’s just one thing after another , a small lump has affected my life so much , just when I feel a bit better you get another knock back .

Thankyou for taking the time to reply . 

Hello again Yoyo

Our experience is very similar.I was precribed Letrozole and Adcal-D3 by my oncologist two weeks before my Dexa scan. I had been given no blood tests to show I was deficient in calcium or vitamin D3 so I presume this is just routine. At this point there was also no evidence of me having osteoporosis so it confirms what I suspected that if you are given a hormone blocker the Adcal-D3 automatically goes with it! I was also offered a bisphosphonate and an immunotherapy drug which I was reluctant to take. My Dexa results were not given to me for weeks on end so I asked the radiographer if she had any idea when they would be available. This was towards the end of my radio sessions. She rang the breast team and I was told my T score.

You are right in saying it is one thing after another but the final decision is in our hands! I have severe fibromyalgia which has caused unstable legs and I have to use a walking stick both inside the house and outdoors to get around. I also have to look after my husband who is very unwell so I need to have the minimum hassle with further medication.

I hope you manage to get more details soon. Your oncologist's appointment seems a long way away. Can you get an earlier date because this dilemma is not good for your health. Perhaps a call to your breast team might result in some action.

Best wishes

Anne

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