Being given choice in your treatments is so very difficult - I’m so sorry it’s been giving you sleepless nights.
Every case is different in breast cancer, and I’m not sure how useful my own experience will be, but for what it’s worth, here goes:
I was diagnosed 10 years ago with stage 2 invasive cancer in my right breast, for which a lumpectomy, followed by radiotherapy, was the provisional treatment plan. Unfortunately when they did the surgery, they found a tiny clump of cancer cells - a ‘micromestastasis’ in the sentinel lymph node.
That meant a vanishingly small number of cancer cells had made it into the lymph node nearest my tumour, but nothing more.
Officially one micromestastasis counts as negative for node involvement, but the surgeon said that he thought it preferable for me to have some further form of treatment, just to be on the safe side.
It was a choice of either
a) complete axillary node clearance or
b) additional radiotherapy on the armpit or
c) chemotherapy.
Like you, I was kept awake at night for some time trying to decide what to do. I was very resistant indeed to the idea of chemo, because my first husband had suffered horribly with chemo before a bone marrow transplant for leukaemia, and then died afterwards from a chest infection while his immune system was still suppressed from the chemo; different illness, different type of chemo, but still I was utterly determined never to have it.
It’s always dangerous to say never, however, because when I contemplated the other two forms of treatment, they also had significant downsides: notably, the high risk of lymphoedema, which can affect your shoulder function, and cause swelling in your arm for the rest of your life. I researched this extensively, and it sounds hellish. Further, I am a swimmer, and it’s really important to me, and lymphoedema might mean I couldn’t swim.
So I was truly stuck between a rock and a hard place, and when I researched the effect that the chemo would have on my prognosis I found, like you, that is was very small.
In the end I had to balance off the pros and cons: with chemo there would be a very unpleasant physical experience for 5 months, plus the lowish risk of further long term side effects much later. With the node clearance or armpit radiotherapy there was less brutal treatment now, but a much higher risk of the side effect of lymphoedema in the near future, and possible life long significant physical impairment, as there’s not a lot they can do about it.
In the end, despite my enormous fear of chemo, I chose chemotherapy. I had to be escorted to the chemo ward by my family every time, to make sure I didn’t run away, and the doctors had to tranquilise me with Lorezepam to get me calm enough for each dose, but I did it. It was vile, there’s no two ways about it, and I still have flashbacks, but I’m glad I did it.
My armpit is intact and I have no risk of lymphoedema, and although the course of chemo feels like a lifetime, it isn’t; It comes to an end, and eventually you get your life back. And go swimming…
And over the course of the last ten years, whenever The Fear has come back about the cancer returning - which is impossible to avoid whenever you feel the slightest bit unwell* - it reassures me that by having chemo I threw eveything they had in the arsenal against it.
One last thing - I think the risk of contracting a secondary cancer years later because of having had chemo is actually quite low, so if you want to quantify things it might be worth finding out what percentage the increased risk actually is, to measure against the percentage chance of the chemo improving your prognosis. When I made the decision, I decided not to overthink things in terms of the possible long term effects of chemo, as I felt that without the chemo it was possible that I might not survive long enough to develop another form of cancer.
Wishing you the best of luck, with whatever form of treatment you choose xx
*one of the strangest side effects of having cancer is that it turns you into a weapons-grade hypochondriac for the rest of your life…