I’ve got three more RAD treatments and then effectively my treatment is over and I can try and forget about this all until my reconstruction next year however the closer the end gets the more questions seem to be arriving.
I am assuming that I will have some sort of scan at then end and then be told that it’s all gone (well what they can see anyway) or that it hasn’t? Is this the case? I know we’re all in different health authorities but there must be an overall similarity to this lot.
I have has a right full mastectomy, 6 cycles of EC chemo, after an allergiv reaction to the other sort - can’t remember the name. I have had 12 rad treatments, 15 when I’ve done. I had a Grade 3 Triple Negative Tumour.
Thanks in advance.
Love and all my strongest best wishes
Ruth
x
I wasnt offered a scan for a year after treatment but I did have 3 monthly appts with oncologist.I dont think anyone is ever given the 'all clear’after bc.I too am triple neg.Good Luck,Vxx
Hi Ruth
Like Horace after treatment I began the 3 monthly check ups.
The first was with the onc, which was really just a chat and a physical examination of the mastectomy site, other breast, arm pits and neck.
My next appointment is tomorrow with the surgeon who performed the op, and I am expecting a similar procedure.
The first scan, a mammogram will be next Feb for me, a year after the end of treatment and the check ups will become 6 monthly.
All the best as you come to the end of rads - its a long haul isn’t it.
M x
I asked the oncs about this last year as I didn’t really understand what was meant by remission. I was told that if I get to 5 years post surgery with no more problems they can tell me I’m “technically cured”, but that’s not to say it would come back in the future.
Thank you for replying so quickly.
It feels a bit like we’re left in the wind then. I was really hoping for something a bit more firm, one way or another.
I was getting six monthly exams (breast, neck, axilla), plus a yearly mammogram. All very well, but suppose there’s something going on somewhere else?
I asked my previous onc about this and she said if I ‘got anything’ that didn’t clear up in a fortnight, to contact her. Again, all very well, but I imagine one could be symptomless for ages, by which time…
I think the bottom line is that it is too expensive to scan people with no symptoms, with the result that it is almost impossible for us to get early warning of (and treatment for) future problems in good time.
Me too!! Just spoken to my breast care nurse and she’s said that the way they look at is:
they didn’t think I had cancer anymore when I started my chemo and rads so there’s no reason to think I have it now so they don’t do routine scans (even though they know we’d all like them to)
Just feels so endless, and god knows I need this to end.
Am now all teary with three kids asking me what wrong, argh this cancer stuff makes me cross!!
I read a report recently about cancer treatment in the US, where they seem to scan for everything as routine (this also applies to other illnesses, someone I know had a scan recently for varicose veins!) This report was saying that they have reason to believe patients could be developing cancers from too many scans. One of the reasons that oncologists here don’t like doing them unless it’s absolutely necessary is because you are getting another dose of radiation - if you’ve had radiotherapy you’ve had enough to last you more than a lifetime which is why rads are so carefully worked out and directed to the right areas.
I have a relative who is a Professor of Oncology specialising in radiotherapy and he told me last year a cancer has to be the size of your smallest fingernail before it can be detected by any scan, anything smaller does not show up. 2 oncologists have told me theyare not expecting to find my cancer anywhere else, but if I had any unexplained symptoms or feeling of unwellness they would get it investigated quickly. They have also told me the statistics say I have up to a 40% chance of it coming back within 5 years, but they would be most surprised if it did. As time passes it becomes easier to deal with all this, I am nearly 2 years post surgery, 13 months post chemo and 4 months post Herceptin.
When I was first diagnosed and given my path report (not promising, 8cm tumour + 15/20 nodes) and my Onc was explaining how bad/serious it was I asked for scans to check for spread. She refused, advised me to have every treatment first and if there were any strays then to let the treatment have a go at them first, only upon presenting with symptons would she order me scans. At first I thought it was finacial (and probably does play a part as Oxfordshire) but she also explained to me that cells dont pick up, tumours have to at least the size of a small finger nail so early scans tend to give false results / hopes, instead I was checked and prodded every 3 weeks for 6 months then 6 weekly for the next 6 months, then quarterly and now 6 monthly.
Then last year when referred to PS he was adamant he would not do my recon without me having scans due to path results. This was not very encouraging for me as I knew this was not common practice so therefore was sh*tting the scans and what they would fine as I was finally getting back to the old me and my Onc was livid, I had no symptons had been checked galore and bloods had been stable and fine throughout treatment. I had MRI whole spine and CT on liver and chest. Then got a phone call, had to re-called as something on liver, so this time a MRI on liver rushed through as urgent, luckily was innocent, but a bloody nasty experience.
When my Onc called me back with results she advised this was exactly why she doesn’t like scans if not presenting with symptons and to be honest I now share her beleifs on whats the point in going looking for something that might not bother you for years or cause worry over nothing. at the moment I can still say I have primary and tell my kids I am not dying, I know the clear scans dont mean I am cured, I also am fully aware of my high risk but personally for me I dont want anymore scans as they do not give me closure.
Hello,
I will try to shed some light on ‘Follow-up’ but as you have rightly said it does differ around the country and so your experiences may well be very different based on individual factors.
The British Association of Surgical Oncology in their guidelines acknowledge that follow up differs around the country, and that it has not been established what the most appropriate regime is for follow-up mammograms. The Royal College of Radiologists suggests mammograms every 1-2 years for 10 years following diagnosis.
Research has shown that attending the follow-up clinic does not aid early detection of recurrent disease, with the majority of recurrences being detected by the patient themselves between appointment times.
We also know that the most likely time for a recurrence to occur is within the first 2 to 3 years after initial diagnosis, and that the further in time away from initial diagnosis the chance of a recurrence lessens.
However, having said this, we also know that breast cancer can recur at anytime in the future, and so being aware of your general health is important, as is having any changes to your health that occur checked out by a doctor.
Many people tell us at Breast Cancer Care that this is really difficult to live with, and that many family members and friends find it hard because you can’t say I am ‘cured’, or I have the ‘all clear’- but at the same time you are hopefully well and free from disease.
If you want to talk through with someone about your individual situation please do give the freephone helpline a call on 0808 800 6000
I can understand the reluctance to scan…but here’s my recent experience in more detail…
The year before last, I applied to go a lymphoedema research programme (of all things). (Before that my check-ups were just the mammogram, exam of breast, neck, axilla, as mentioned above). Part of the conditions for acceptance on the trial was agreeing to an MRI scan. Mine wasn’t clear. There was a tiny return, which meant I was rejected for the trial. I was however completely symptomless and would have had no need to consult a doctor for months, possibly years, I was told. But the fact that something, albeit about as small as it possibly could be, had been discovered, prompted, (possibly forced?) an immediate change in medication, more scans, closer surveillance and an altogether more pro-active response.
I have to say that this early detection of a problem was not given a positive spin by some people involved in my treatment, who pointed out that I may have to endure more worry than necessary. Well, fine, I can deal with worry (my constant companion), what I hated was not knowing. It gave me some measure of comfort that something had been picked up about as early as it possibly could be.
I think this was the one and only time in my life that I’ve been glad I’ve got lymphoedema.
When I said I was offered a scan a year post treatment I should have added that I refused it for all the reasons expressed so well by debbie.My oncologist complimented me on my sensible outlook and added that the treatments for secondaries were no less effective if you delay until you have symptoms.I asked him outright if bc secondaries could be cured and he said not with current medical knowledge but they can be successfully controlled,sometimes for many years.He also said that there is a school of thought that the radiation from repeated scans could speed up growth in tiny mets and could even ‘wake up’ dormant cancer cells in the tissue.I will not have a scan unless I have definite symptoms which my onc feels should be investigated.Love Vxx
The NICE guidance led me to believe that follow up was a waste of time therefore I discharged myself after finishing treatment nearly five years ago. I hate hospitals and I also thought it was better for resources to go towards diagnosis of primary breast cancer. If I have symptoms I have them investigated.
i believe follow up should be tailored to individuals and their preferences but should be based on information on the benefits. One of the major benefits seems to be reassurance, but in my view this is false reassurance as an annual check is unlikely to pick up primaries more than self checking/breast awareness and mammograms.
I haven’t had mammograms either as they didn’t pick up the breast cancer I had so I think they could lull me into a false sense of security. 80% of cancers are detected by women themselves and although the breast screening service takes credit for every death saved in the last 20 years since screening was introduced, I’ve heard of lots of women who had screening and a few months later found a tumour that it hadn’t picked up. I’m not convinced it’s as reliable as they make out, and they have a vested interest in promoting it.
Roll on more reliable, cheap testing, which doesn’t burst the eardrums or cause claustrophobia. I haven’t had an MRI but that’s what makes me avoid them, that and dangling my breasts into holes in the machinery, I have my dignity
Hi Horace - I think you and your onc have very valid viewpoints - and I think I probably share them up to a point. My day-to-day philosophy is ‘I’m well until and unless they tell me otherwise’ and I can appreciate the school of thought that suggests that overscanning may ‘twist the dragon’s tail’ as far reactivating cancer is concerned.
But I AM glad that I am now right under someone’s nose, treatment wise, instead of being, perhaps, more in their peripheral vision, as it were. On balance, I’m pleased that I’ve had all sorts of investigations because I feel comfortable knowing exactly where I stand.
For the record, my cancer was not picked up by any of the triple assessment tests because it was hidden by a fibroid measuring 46mm. My BC nurse told me the surgeon was really upset as he had already told me 3 weeks before having the fibroid removed that I did not have cancer. It was 33mm and hidden right under the middle of the fibroid. Living proof that mammograms and ultrasound don’t pick things up.
I think you’ve hit the nail on the head - there’s a variety of scans that can be used - PET, CT, to get a more rounded picture. Then, of course, money starts to come into it.
I think Mole has a point when she says that mammograms and ultrasound are used rather than other techniques and some of the reason for that has to be cost, I fear.
I’ve read all your comments and agree with lots of them. I think a lot of my anxieties are due to the fact I’m ending treatment and will soon be “unmonitored” for a while, I feel a little like I’m losing my safety net I suppose. Also the curse of the internet means that I’ve probably read too much and looked too far for answers about triple neg cancer. I know it’s better to be informed but terms like “higher risk of recurrence” and “lower survival rate” are really sticking with me at the moment. I am trying to live my life and concentrate on the fact that my tumour was removed and I no longer have cancer. I found my tumour myself, I’m 32 so wouldn’t be due for scheduled breast checks for a while and, like cherub, mine was hiding behind a cyst, it took two months for my referall to a breast clinic as no one thought it was anything to worry about. They initially thought it was around 2cm but when they did the lumpectomy it turned out to be nearer 7cm so I had to go back and have a mastectomy - hence my dented faith, although in contrast to that I would say that every single doctor or nurse, specialist or surgeon I have seen during this journey has been fabulous. I will have a mammogram this time next year so until then it’s a matter of picking my chin up and getting on with it. I would be scanned if they offered me it right now - that opinion might change in time.
Thank you all so much for your replies.
Good luck to us all
Ruth
x
I was very lucky in that I had an appointment for a mammogram 10 days after going to my GP with the lump. It was July, so I think maybe a lot of people were away on holiday which was why I got taken quickly. My delay was on account of being diagnosed with a fibroid - as it was non urgent it was 3 weeks after the results before I had it removed, then another 4 before I had the lymph nodes out (although the surgeon said in his opinion the few weeks between the 2 would not make any difference to the outcome). He was very upset I had to be put through another surgery and ordered an investigation at the path lab to say if there had been any mistakes made.