ER+ve BC treated in 2011.
Given 8 years of Tamoxifen/Letrozole.
Wish I had insisted on 10 years.
Now have likely bone Mets in shoulder.
Waiting for CT scans and oncology appointment but no capacity in clinic.
Waiting is unbearable!
Do you think it’s worth asking GP to prescribe Tamoxifen or Letrozole so that I can feel at least something is being done while I wait?
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Dear Hope,
Waiting time, is endless, I think it would be a good idea to speak with your GP to put your mind at rest.
Thinking of you and wishing you well at the moment take one day at a time be kind to yourself all very easily said by me, hopefully things will get sorted for you as soon as possible.
We are all here for you please keep posting and let us know how you’re getting on.
With the biggest hug Tili 
Dear Tili,
Thank you. I know I am only one of many in the NHS queue but the waiting is horrendous.
I have sent a KliniK request in to my GP practice this morning on your kind advice.
I just can’t stand waiting while nothing is being done and this thing could be eating into my already weakened humerus and anywhere else in my body that this horrible disease might be attacking.
I’m also scared I’m going to fracture it. Xx
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Just had a call from a GP.
They can’t prescribe Letrozole for me but have told me to expect CT scan appointment in second week of July.
So still waiting but at least I have some sort of a date!
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Hi I’m curious, is it fact that Letrozole protects your bones? I’ve only been on letrozole for 2 years, and an old shoulder issue,ie i had a LHB - Long head of bicep tendon cut and Acromiumclearance. Now waiting to have either short head stretched and reattached or BAR, Biological Acromium Reconstruction.
Both could simply be linked to wear and tear over 10 years. but makes one wonder? And yest its always best asking your GP, but if you still have contact with the christies team, or not, might be worth asking them first as they will have more up to date information. Good luck and keep me posted, thanks Moonsox xx
Hi Moonsox,
Re your question about does Letrozole protect bones…(and I’m not an expert)…it provides protection by reducing the chances of recurrence of BC in the breast and it also reduces the chances of secondaries (which I hasten to add is usually low chance for oestrogen positive BC if a persons nodes were clear when the BC was diagnosed).
One of the ‘potential’ side effects (due to the drug effect on oestrogen) is osteoporosis. Obviously not everyone gets side effects and I understand that there are things the medic’s/onc’s can do to assist if there are such side effects on bones, so it’s best to let them know if you think you may possibly be getting such side effects.
Please see the link to the BCN info on Letrozole below:
breastcancernow.org › files › pdf › bcc64_letrozole_2022_web
If you have any concerns do speak to your oncologist, GP, or hospital BC nurse, and/or you can phone or message the BCN nurses via the forum if you think it would be helpful to have a chat.
I’m sorry if that’s not quite the response you were hoping for. With so many of these things many upsides, but some potential side effects.
Seabreeze (10 years on, lumpectomy, radio, borderline chemo but not recommended, 8 years of Tamoxifen)
Xxx
Hi Hope,
I hope you don’t have too much longer to wait.
I really sympathise. I had a secondary scare 3 years after my BC diagnosis…had pain in ribs…nuclear bone scan came back as highly suspicious, then from further scans it turned out to be (what I understand they refer to as) a false positive. In my case I found out I had fractured my ribs years n years before (I had been unaware of this), and must have somehow aggravated it resulting in the pain years later. I was informed by my oncologist that fractures can sometimes look very similar to secondaries on nuclear bone scans.
So I really so feel for you - I felt so anxious when I was waiting for the second level of scan results. I tried all the distraction techniques, mindfulness, doing gardening, even watching young children’s films with my friends 4 year old, anything to try to reduce the stress and anxiety I felt at that time.
So sending you big gentle virtual hugs.
Xxx Seabreeze
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Hi Seabreeze,
Thank you for your lovely post.
Unfortunately, I definitely have bone Mets in my shoulder.
I paid for a private MRI as I couldn’t stand the waiting any longer. Not the result I was hoping for, to say the least!
Now waiting for NHS CT scan to see if there are any other Mets or if they are from a new, unknown primary, somewhere else in my body.
Still terrified.
Have to tell my daughter over the next few days as I don’t think I will be able to hide my fear from her while she is home for a few days xx
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Hi Hope,
I’m sorry to hear that and given the situation can understand why you decided to get a private scan, just to know. Waiting is so stressful. I know I was very fortunate to find out I’d unknowing fractured my ribs years earlier (in any other situation that line would sound so bizarre).
Lovely that your daughter is visiting you for a few days. I can see your dilemma and agree with your thinking re telling your daughter when she stays with you. For multiple reasons, not just your angle that she may realize something is up, but also I think you really need her support at this time, and I’d imagine she would want you to share this with her. Also if she’s there with you it means she can respond directly to you, rather than any other form of communication (when there’s a geographic distance).
I hope you don’t have too long to wait till you can see your oncologist to find out what treatments they recommend and commence your treatment plan. If you haven’t already, would it be worth contacting the breast care nurse or oncology dept at the NHS hospital with the results of your private scan? I’m not sure how it works re different scans from different places but it might be worth asking.
I hope you and your daughter do a few nice things during her visit, perhaps some nice walks or whatever you both enjoy/find calming.
Sending another gentle virtual hug
Seabreeze x