I also had grade 2 invasive, WLE, 2.8mm tumour, ER PR pos, HERneg, not epxecting to have chemo, just RT, but they found 1 micromet in sentinel lymph node. My surgeon said because of micromet some further treatment advisable , and offered me the choice of
a) chemo
b) full axillary clearance
c) radiotherapy to armpit.
I am a swimmer, and it is v important to me to remain as physically active as possible, and not to lose physical capacity in my shoulder and arm, and so did a lot ofresearch on the possible effects of surgery on the lymph nodes, lymphoedema, its life time risks, and its effect on people’s quality of life - once acquired, it can’t be cured. Figures vary, and it’s really hard to find anything accurate, but it seems true that a significant minority of women who have ANC will at some point get lymphoedema and this may impact quite severely on their quality of life. This can happen at any time for the rest of your life.
Although I had sworn for the last 20 years I would never have chemo, because my husband died at the age of 32, from a chemo related lung infection while having chemo for leukaemia, and suffered hideously from the chemo beforehand - so this was no easy decision - I chose in the end to have chemo, on the basis that 18 weeks of chemo would be horrible but was a one off, whilst the risk of lympphoedema, and the fear of it, would be with me for ever. It wasn’t a risk I wanted to take.
I did chemo from Dec -April, and it was unspeakably horrible, but now it’s done, and the memory is starting to fade.
Ironically, given my fear of chemo, my radiotherapy, for 3 weeks which finished in mid June has actually caused me much greater physical problems - very bad burns, and now lung problems.
Everyone says that radiotherapy is a walk in the park after chemo, and it’s less immediately physically challenging, but it can inflict quite a lot of damage on you, the possibility of which I really didn’t take seriously enough.
Poems Galore, I think you were very wise to avoid RT , with your lung problems, given that you had a choice - unfortunately I didn’t have a choice, as you can’t have a WLE and save your breast WITHOUT having radiotherapy as well, becaue there’s something like a 50% risk of local reoccurrence without radiotherapy. And I would rather have taken the risk of lung problems than lose my breast, so i would have done it anyway.
However, it just didn’t really dawn on me that lung problems were likely to be an immediate risk. I already have weak lungs - asthma - but that only manifests as bad coughs very occasionally, and it never occurred to me that RT would make things go ballistic.
I’ve been coughing incessantly and painfully since I finished RT in mid June - have been on high doses steroids for 4 weeks, and it’s just not responding, so now I’ve got to have a CAT scan to see what the hell is goimg on in there.
I’ve been totally freaked out by reading on here about people diagnosed about the same time as me last year, and also just finished treatment, who have recently been diagnosed with lung mets after getting coughs that won’t go away…
I had assumed it was just the effects of the cancer treatment - chemo can also hurt your lungs, I have discovered - on my sub-standard lungs, but now I’m starting to wonder…
Anyway, sorry, have got right off topic, but I’m a feeling a little stressed about all of this right now.
To return to the micromets and lymph node question, the problem here is that they have only recently developed the technology to identify micromets, so it’s all a relatively new issue, and there is just not the body of research literature that there is on most aspects of breast cancer and its treatment.
This being the situation, I think it’s really important that surgeons should make peole aware that there are differing opinions on the subject, and different possible courses of treatment and LET THE PATIENT DECIDE rather than imposing their own - particularly in a situation where more surgery and long term physical effects may be involved.
My own surgeon was terrific - he laid out the options, said if it was his wife he woud recommend she went for chemo, but left it up to me to decide.
I still had this huge resistance to chemo AT ALL, leaving the surgery issues aside, but what what finally convinced me was a research study on micromets in the Netherlands, which the surgeon gave me . There is no standard protocol there on micromets and chemo - some women have it, some don’t .
The study showed that for women with early stage invasive cancer like mine (and yours), and micromets, over 5 years there was a 10% survival advantage for the women who chose to have chemo over the women who didn’t.
This is only one study, but quite a large one, and it convinced me to do it. The oncologist calculated that for me the extra survival probability was more like 7 -8% and that seemed significant enough to go for it.
I’m very glad I didn’t have the ANC, and I’m glad I did the chemo, vile though it was.
So my message would be consider chemo - it worked for me in a closely analagous situation, and I’m very happy with the choice that I made.
And given that you seem to feel much the same way as I did about more surgery, please don’t let them push you into it unless you’re absolutely sure that it 's the best option for you, and that you are comfortable with it. It’s your body, and your life, and your sugeon does not have to live the consequences…
It’s so easy to forget, in these horrible circumstances, and all this pressure, that you always have a choice, you can always say no to any kind oftreatment, or elect to postpone it until you are feeling ready for it.
You can just say no, or ‘no - WAIT’.
I postponed both my chemo and RT, and taking the whole thing a bit slower allowed me more mental and physical recovery time between each stage of the treatment, which was badly needed. The medics sometimes forget just how close we are to losing our minds in all this…
A final point - even if you do have a complete node clearance, I am not convinced that provides any guarantee at all of no reoccurrence - THERE ARE NO GUARANTEES . Cancer cells don’t just travel through the lymph nodes, and after nearly a year of cancer treatment and reading and hearing about other people’s experiences of it, it seems to me that anyone who thinks any particular treatment will necessarily have cracked it is living in a fool’s paradise (however psychologically helpful that might be).
I know that despite surgery, chemo and radiotherapy, and a very good prognosis (91% chance of disease free survival for 5 years, yada yada yada), there may very well still be a Circulating Tumour Cell with my name on it happily splishing about in my bloodstream right now and , if so, once it’s landed, then I’m basically toast. And it may have landed already…
That’s just how it is, and I now accept that.
EDIT: sorry, reading this through it occurs to me that I have rather confused things by writing on here about my current lung problems which are, I should add HIGHLY UNLIKELY to be a recurrence of the cancer already and ther__efore not relevant to the ANC/not ANC debate.
I have pre-existing sproadic lung problems and the most likely explanation is simply radiation pneumonitis, ie that the radiotherapy has inflamed my already weak lungs.Usually it doesn’t happen so fast, but I guess if you’re weak in that area already, you’re more vulnerable. It is something that will clear up eventually, with the steroids, but it may be a matter of months rather than weeks and i should perhaps be being more patient, however insane it is driving me.
Hopefully the CAT scan will confirm this shortly.
Nurse informed me that further surgery needed to remove other lymph glands. Now awaiting date.