I had breast cancer coming up to a year ago I’m free now , but I really don’t think that just a mamo yearly is enough screening surely there should be other tests and screening available.
I hear you on this one. I had my first mammogram since diagnosis last January and they said it was fine. Despite some initial relief it’s hard to get rid of the gnawing anxiety about whether they may have missed something. I had a mastectomy and could feel all sorts of lumps and bumps but they categorically refused to scan again, not even an ultrasound so last Summer I paid for one myself. It was ok.
It’s all protocol led and the initial treatments are the most successful at knocking out the cancer. Trouble is if you’re low grade like me with no node spread, they do very little at all and after surgery send you on your way with hormone therapy. Whereas I have a friend you had triple negative which is known to be quite aggressive and they threw everything at it and now she’s still fine 7 years on. Apparently research has shown that with triple negative if you’re free after 5 years it’s very unlikely to ever come back.
Unfortunately with ER+/HER2- and low grade BC like mine there is a risk of recurrence up to 25 years later after studies were done in Denmark. It’s absolutely critical that with this type of cancer excess weight is kept off and weight bearing exercise can reduce metastatic risk by 50%. I’ve found that out myself and am trying to keep to it and lose the weight. Pity no-one told me about it when they signed me off last a summer, knowing that I was 2 stone overweight. They didn’t say a thing about it. In Australia, part of the treatment for early breast cancer is to get in the gym 3 times a week. We aren’t told this.
I know we’d all like to have a yearly full body scan but that’s a lot of radiation and I’ve read that scans don’t pick up tumors less than 1cm anyway so there are definitely pros and cons to scans too. I suppose all we can do is remain vigilant and live the best life we can.
thanks for your reply and lots of info , my diagnosis was mirror image of yours but I had a lunpectomy. thsbks for sharing regarding your friend with the triple negative as my best friend had this sane time as me and it’s good to no 7 years on she’s free .
I’ve started gym classes myself to try and keep fit I’m going 3 times a week my diet isn’t amazing but is better than pre diagnosis.
Im
do happy your first mamo was ckear likg msybit continue xxx
I did a lot of reading, mainly pubmed - https://pubmed.ncbi.nlm.nih.gov/ and then also looked into cancer treatments in all the developed countries for my more dangerous one. They varied with regards follow up. I also looked at NICE clinical guidelines and also checked a lot of medical papers again focussing on my cancer. I then put together what seemed to me to be the right follow up, based on international guidelines not UK ones.
When I started I have never paid for private medicine so that are was all new, but the poor system I encountered meant I had to change teams. So I looked at the leagues of cancer hospitals internationally and chose the top UK one and called them up as a self paying patient. Not cheap but I am alive and being tested at a run rate that makes more sense to me.
I kept a folder 'Cancer sort out' created 3 weeks after diagnosis and before I knew if it was terminal or not, and every time I found a new thing I added it to it in the early bewildered stages and then later when my feet started touching the ground again I sorted it out and started to get additional tests, almost all privately. Things like parasite testing, virus testing, heavy metal testing, vitamin and mineral testing, vitamin D testing etc. Because cancer can be caused by chemicals, viruses, parasites, genes as well as back luck I wanted to eliminate any more problems since I already had 3 cancers diagnosed n one year!
A ton of bewildering research, slowly pulled back into shape for someone totally non scientific and non medical!
The brill news is that work has already saved someone else's life, as I tell friends and acquaintances to get a schedule of proactive tests = and one guy did, had a colonoscopy and his doc said in less than 2 years what we found would have turned cancerous. So being proactive and getting tests early is absolutely life saving.
I am not a doctor nor in charge of the NHS budget. But I don't understand why testing is not done more often as it must be cheaper than treatment.
I also get my blood tested at RGCC for circulating blood cancer cells and they test them to see what might work best against these cells, again interesting cutting edge, which will in a few years time I hope become normal - personalised testing and combination therapy.
I didn't take part in the Care Oncology clinic tests but they interested me too.
All to say, I did a massive (and overwhelming) research going from knowing nothing to learning a fair amount then chose the tests that were right for me.
I found that the negative = I was misdiagnosed 2 years earlier, and one department was simply not competent = eventually turned into a positive as sadly I could not hold trust in my original cancer team as they were not able to do a good job, so it meant that whilst that was an awful experience it pushed the onus back onto me, and within 6 months I moved teams and put into place what I think is a testing cadence better suited to staying alive for me!
I was diagnosed with TNBC in 2020. It didn’t show up in mammograms but made its presence know in a swollen lymph node. I had a mastectomy, lymph nodes removed and then chemo. It only showed in my breast after an mri scan. Now I get an annual mammogram on my remaining breast and although they have been clear I have no confidence that I am clear as it can come back anywhere. Scans should be part of follow up automatically.
oh my word , do the memo never picked it up that’s terrible , oh that’s what I mean we have to be our own doctor on times thankfully you caught it though .
I have heard this before that they don’t pick up lots of breast cancers .it makes me mad to think that that could have been missed , and we are relying on this now annually .
what I also worry about is that if my cancer returned elsewhere it would be advanced by the time it makes a appearance surely something should be done better to monitor us
I’m fine most of the time and refuse to let it get me down. On ibandronic acid and have finished 2 of the 3 years I need to take it. I did say to the consultant that I didn’t see the point of an annual mammogram when 3 of them after they thought it was breast cancer never picked it up. The tumours were too small. Hey ho such is life. We just get on with it don’t we. You take care Lara and be well
