Breast Cancer Now Forum

In Manchester the protocol has changed I am due next year for the five year mammogram 🙏🙏 and was due to return to three-year screening . However because of my family history ( my sister died of breast cancer ) am now getting yearly mammograms till I am 70 in five years time . It’s a bit of a postcode lottery but I would have paid for a private screening just couldn’t have faced a three- year wait  ... View more

The fact your cancer recurred may be because you stopped taking the tamoxifen . It may not . . But now it has recurred it would be high stakes indeed not to take hormone blockers . Especially as it is stage 3 . Oestrogen is not good for anyone who has the hormone receptor BC . It literally feeds cancer cells . Please take the meds and listen to the team .  ... View more

Please speak to your oncologist before making decisions. They really do know the territory. Not a good idea to stop the AIs been taking 4 years no problem at all with brain function  ... View more

I had two heart scans before having chemo as part of standard procedure and my cholesterol is low . My risk of cancer recurrence compared to heart disease is on another level . No brainer . As for Alzheimer’s no one knows what causes it but we do know for us oestrogen is the enemy sadly  ... View more

I’m afraid that for those of us with hormone receptive breast cancer oestrogen is not a positive and like it or not we have to suppress it with drugs . It’s what keeps us cancer-free ... View more

You do learn to live with uncertainty. And hormone blockers give you more time to learn .I walk three miles a day . My joints after four years on Letrozole are a bit stiff . I also have lymphodoema of mild variety . Reluctantly wear a sleeve but not every day . The AIs are the game changer . And there’s nothing merry about secondary breast cancer . My sister stopped taking tamoxifen. She died .  ... View more

That’s awful . I had cold cap for 12 treatments FEC 3 and 9 Pavlitaxel . Kept 70 per cent of hair . I was told the reason more women do not use it is because of cost and they only offer if you ask now in your case they are taking it away . I think that is shocking what difference does it make which drug you are having ? I would insist on it again  ... View more

Do persevere body adapts after four years my joints bit creaky but no pain and I walk every day several miles that’s really important. Stay active !  ... View more

Yes but people tend to post here if they have bad side effects I try and counter that as have been taking nearly four years and tolerate well can take a few months to settle down.  ... View more

My team have just changed the protocol for people with family history of BC . If I get to 5-year mark instead of going back on national screening next year I am screened every year till 70 that’s an additional four years . Worth asking about  ... View more

Go for it . You may feel tired but cruises are restful ! I used cold cap and kept most of my hair so good luck ! X    ... View more

I had joint pain for quite a while but it eased in time . To be clear I haven’t got off Scot free . Have neuropathy get tired and I would struggle if I wasn’t single BUT . My sister stopped taking the meds and died  of secondary breast cancer . More recently I begged a younger woman I know to taker her Tamoxifen meds and she wouldn’t listen . She’s now Stage 4 . I read a lot of posts on here suggesting AIs are optional . For most of us they really are not . They took survival rates over five years from about 50 per cent to 90 per cent .  ... View more

I have just had my four year check up and been told quite unequivocally by my team that the AIs are absolutely essential to stop recurrence . And I will be taking them for at least another six . There is no protocol U’ve ever heard of which says  not necessary for hormone positive BC and I am under the care of one of the best cancer hospitals in the world . They aren’t an extra and  most of us tolerate them well . But you must also exercise watch your diet because being overweight is a major risk factor and take care of general well-being. . Sorry but you should persevere. I’m 65 BTW so definitely older  ... View more

Sorry you’re so scared but as others have said surgery truly isn’t optional . It’s the only chance we have of a cure . The rest is just back-up . I had lumpectomy and all lymph nodes removed . I had discomfort but not pain and was OK within weeks . Please talk to your team they can help with the anxiety  ... View more

Every case is different, and I’m sure mastectomy is only recommended when necessary. Sorry you’re going through such stress . FWIW I only had lumpectomy but also full axillary  clearance which has left me with lumphodoema. My actual surgery was a satellite hospital which is where follow ups are not the one you mention but I had chemo and radiotherapy there however wherever I have faith in NHS they do an amazing job  ... View more

I think that’s wise . Maybe I am lucky but I have no significant side effects on Letrozole after coming up to four years with another six to go . To stop is to play Russian roulette because as you say early stage breast cancer is just stage 4 waiting to happen . If I end up taking it the rest of my life then so be it . I watched my sister die of SBC in 1999 after she refused chemo and stopped taking Tamoxifen . It really isn’t worth the risk . As for ‘quality of life ‘ I think that is a very dangerous argument. There is much you can do to maximise that with healthy diet staying active AND taking meds  ... View more

My hair didn’t go . It was thin and I lost a lot at the side and temples but was able to cover up . It’s not grown back the same still thinner but not curly and still not grey at 65 ! My eyebrows never came back as before but still here 4 years on . Good luck it’s a very long haul not always easy but keep on keeping on x  ... View more

Please do not be frightened. I am on Letrozole for 10 years ( currently year 4 ) and took ibandronic acid for 3 . I had a bone scan two years ago it was normal and I am mow 65 . I walk several miles a day eat sensibly and I can honestly say the only side effect is fatigue although that could be my age tbh .  I also had chemo which was grim but doable wasn’t sick once . Didn’t lose all my hair did cold cap . And radiotherapy was and is painless . Only side effect slight rash where breast zapped you just use cream . The fact is all these things combined have doubled survival rates for us . And I wish it were otherwise but until an actual cure is found if you are recommended to take them please listen to your consultant.  ... View more

Lymphodoema isn’t caused that way . I have it and it’s pretty mild but a nuisance as I have to wear a compression sleeve and go back to hospital for checks . No idea what caused mine had node clearance possibly radiotherapy but stuck with it . Hasn’t got worse over 4 years though try not to worry ... View more

Still having annual face to face four years on with surgical team and so should you  ... View more