I’ve been pondering this for a while, wonder if any of you know the answer.
How do they know if chemo has worked and killed all the potential errant cancer cells? Do they do blood tests or scans, how do you get the “all clear”. Or (dread of dreads) do you just have to sit around and hope it doesn’t come back? 5 years being the ultimate ?
Just tell me it like it is.
Here is my Prognosis
34 Years old
45mm Tumour - Grade 3
Er + PR Postitive (Er 4 - PG 3)
Primary Cancer
No Metatases or Vascular
86% chance of no reoccurence if follow regime - 3 EC 3 Taxotere, 1 month Radiotherapy, 5 years Tamoxifen
They don’t know for sure. Even if you never get a relapse it may not be the Chemo that prevented it might have been the surgery or the hormones etc
The Chemo is just one part of the treatment and it is really to zap any minute cells which may have drifted off to other parts of your body. But with clear nodes and LVI that is less likely anyway. However your cancer was quite big and they may have been expecting node involvement based on that.
If they did a blood test right now it would most likely show no cancer as the cancer marker blood tests are really to monitor people with secondaries and aren’t that helpful so aren’t done routinely. If you have symptoms then you would obviously want to get it checked out and most units are good at investigating any problems you have. You will get annual mammos until your 50 too.
The majority of people treated for breast cancer these days will live to a ripe old age. And more and more of those who do have secondaries are living with it too.
Brilliant reply, thank you so much
They did say once I had my results that they were expecting there to be lymph involvement because it was so big - I’d been having Clomid for fertility treatment and hyper stimulated badly on it which is a severe reaction and it flooded my body with progesterone which made my moods really really hard do this may have masked the lump, I’ve always checked monthly and did not feel it, even the surgeon said even if it was half the size it would have been very easily self detectable! I was very fortunate it had not spread!
I just dont want this to EVER come back or regrow… I feel like I can put up with it once and deal with it but if it came back, now I know what I’m in for, no bloody thanks. It can eff off.
I really feel so much empathy for people with secondries and who are not curable, I really do. Its very lonely.
My diagnosis was very very similar to yours, large tumor, clear nodes er+ etc, had surgery chemo/ tam/zoladex, even though as you know I now have a new primary on the other side, I have not had any ‘problems’ with the original bc and that was 14 years ago!!! MANY peolple deal with it and survive!! I know quite a few. My dx was more advanced this time & yet I have been told that things have improved so much in the last 14 years, and no reason to suppose it can’t be got rid of again… so repeat after me’ cancer enjoy your stay, as your eviction papers have been served!!! x J
Thanks J I hope I’m also one of the luckier ones… I was told if the original cancer comes back or regrows then it wouldnt be curable but if it was a new site and new cancer (I really don’t get how they *know* that…) then chances are the same as the original primary?
I havne’t had the easiet of lives at 34 so far and if I tell anyone my life story they are fairly bloody shocked I’ve not ended up in a gutter a drug addict and that I’ve survived it all and am “normal”. So what I don’t want is any more sh*t thank you very much. Primarily though, I just want to have a life, I just don’t want it dominated by illness.
I’m having neo-adjuvant chemo. After the first 3 goes, they’re having trouble finding ONE enlarged node, never mind the extensive malignancies of a few weeks ago that were 30x14mm each.
I *think* it’s working. Rather splendidly.
I know you’ve been having a really terrible time of it Ninja with the SEs… if it’s working then it’s worth it, but god chemo’s grim and you’re having a worse time of it than I am!!! NOt that it’s a competition - however I think we’d all like a bloody medal at the end of it all eh?
Impressive that it’s shrunk a load of tumours.
It’s the not knowing, perhaps I’m just going through worry mode. I just want my life back and I want to live it better when I do
Sadly the only way you will know if chemotherapy has worked is if the original cancer doesn’t reappear. The trouble is (as you probably know), that even if your lymph nodes were clear, and there is no evidence of spread to other areas of the body, you could still have cancer cells in your blood (micro-metastases), and these cells cannot currently be detected (although scientists are getting close to developing a blood test that will be capable of that). Consequently, even if a patient goes for five years without cancer reappearing, there is still no guarantee that their cancer has gone, because cancer cells (micro-mets), can circulate in the bloodstream for many years, before reappearing ( I know of people that have gone for 20 years, and then had a reappearance of the original cancer). However, your medical team have given you chemotherapy to try and destroy any micro-mets that might be in you system, so you have taken all the precautionary steps you can. But nobody really knows how effective chemotherapy is at destroying micro-mets - some medics claim it can destroy 100%, while the sceptics say 30% is more realistic. But then what is the alternative ? Endocrine therapy such as Tamoxifen, or Aromatase Inhibitors like Letrozole are only appropriate for oestrogen receptive cancers, and even then, neither actually destroy cancer cells, they simply starve them. Some will try and tell you that endocrine does destroy cancer cells (by starving them to death), but research shows that cancer tends to adapt. Sloane Kettering did a study, that showed in two thirds of metastatic cancer patients treated at their hospital the secondary tumours had developed different receptors to the primary.
By the way, I don’t think it’s correct to say that if you have a recurrence it will be incurable. If you have a local recurrence (i.e, it comes back in the breast), it remains curable. Cancer is only considered incurable when it metastasises to a distant site (and even then, it is treatable).
I hope this doesn’t worry you, because the chances are you will be fine, and get on with your life. The fact is that any of us can get ill at anytime, and all of us have to live with that - and I think that is possibly the way you could go forward.
Fits with the new research suggesting that cancer is a living organism with a ‘brain’ from about 400,000 years ago in our evolutionary history (same as many bacteria colonies etc) that is capable of thinking for itself on some level, and adapting to threats. So the knack may be to hit it with more threats than it can figure out. It’ll be good to see how this thinking develops.
Certainly recurrence or new primaries are curable as much as any cancer is.Triple negative is much more likely to recur in 3yrs post dx than +ve tumours.It’s some consolation that should one be lucky enough to get more tha 5 yrs down the line then tnbc is less likely to come back.Lemongrove is right-hormone + cancers can pop up again after many years though this is less likely for grade3-I believe.
Do I know what I am talking about?
Only from reading and talking to my very open oncologist.
Horace, did you mean to say stage 3 rather than grade 3? A grade 3 tumour is the most aggressive isn’t it?. I suspect you meant to say stage 3, because stage 3 means there is no evidence of metastases. Obviously there could be undetected spread via the blood (as I mentioned in my post).
LG I think i read that grade 3s are less likely to recur longer term as they are aggressive so would normally show up sooner. But they can still recur years down the line but generally it’s lower grade that recur in the very distant future… But perhaps that’s because less people with very aggressive tumours and poor prognosis survive long term following initial diagnosis to actually develop recurrence 20 years down the line.
Finty that’s so much more eloquently put than my bit of waffle LOL… So mine should be… What Finty said!
Thanks Lulu I would be interested in your opinion on an average time for Grade 2 recurrence - if we assume Grade 3 is usually within the first few years - and Grade 1 can be many years hence, often 10 or more. Would you say Grade 2 is the typical 5 - 7 year period? Thanks.
Not sure of the answers to when things reappear, but I read some research saying that the slower growing sorts were quite often treated less effectively/aggressively, so were more likely to cause trouble later on than some of the faster ones that got whacked harder by the medical teams.
i dont have any real answers as a grade 1 can recur within a couple of years and grade 3 could recur after 20 but your correct that there isnt so much info on grade two as its in the middle so statistically speaking its more likely to recur after 5 years but less than 10 i would imagine… as your typical grade 3 would recur within 5 years and your typical grade 1 would recur after 10 years…
however for the majority of people treated for BC today they wont get a recurrence at all.
also what constitutes a recurrence? this is variable depending on what you read… its often referred to as disease free survival… but that means new primaries, true recurrence, progression to lymph nodes or secondaries all come under this heading.
disease free survival is increasing all the time as is overall survival… having spread or progression of disease doesnt mean its all over… it often means adapting to live with cancer in the way you would live with heart disease or diabetes… you may have to take meds for the rest of your life and you may have periods of time when you relapse but you can live with it.
Amber the lower grade cancers are treated less aggressively because usually over treating doesnt improve outcome… giving chemo to somebody with a 10mm grade 1 cancer with neg nodes wont stop a recurrence in 20 years time but it will make somebody feel bloody awful unnecessarily for at least 6 months of their life and cause other long lasting or serious side effects… they will only treat if the benefits outweigh the risks.
Interesting thread. Without being alarmist thought I would relay my experience. First DX 2000 grade 1 tumour, second dx 2005 grade 2 tumour new primary same breast, third dx 2010 grade 2 tumour recurrence in breast tissue left from reconstruction in same breast.
Have just finished chemo which is the first time I have had it. Had Rads on first dx.
I think of myself as having a chronic condition now, dealing with the issues as they arise. I am still considered low risk as there is no evidence of spread but this in no way minimises the trauma that I and my family have been through and to be honest I just laugh when they tell me that now.
For me catching the BC early has been really important and I am not scared of BC anymore as I know that even if it does come back you can still ‘beat’ it several times over. I know my story is by no means unique.
I don’t know if chemo has worked but I have given myself a good chance of it not coming back again and I guess thats all we can hope for.
I know it is really hard to not worry about BC coming back even when you have had aggressive treatment but things do move on very fast and you will have a good chance of dealing with new DX’s if they arise.
Thanks for clarifying, I understand Horace’s post now.
Also one more thing. I think at the heart of this thread, is the question how does someone cope/live with the fear and dread of big C hanging over them. While I don’t have the answer to that, I do believe it is necessary to distinguish between positive fear (i.e, the instinct that alerts us to danger and makes us take action), and negative fear (i.e, fear of the unknown, or things we cannot change, which achieves nothing other than to make us feel helpless and worried). For example, as someone with stage 4 metastatic cancer, I don’t have the fear of the unknown, because I know I have cancer, and therefore don’t have the worry of whether it has gone, or will come back. Neither do I fear the fact that I have the big D hanging over me, because it’s something I cannot change (and lets face it, every human being has to live with the knowledge that they will die at some stage). Obviously, like everyone else, I would like to live for as long as possible - and that means having the best medical treatment. Unfortunately, the simple fact is that the treatment for metastatic cancer in Britain is very mixed, but as it’s something I can influence, I think fear is a positive response.
Sorry to waffle on, but hope this may help a little, tosort through your emotions.
