Choosing chemo or just radio (premenopausal ER/PR–positive, HER2-negative, node-positive)

Hello!

I’ve had a mastectomy with immediate reconstruction 8 weeks ago for Invasive Lobular Carcinoma. The cancer is/was ER/PR+ HER2- with 2/5 positive lymph nodes.

All went well with the surgery and finally met with the specialist doc who will take care of my adjuvant therapy. My ontcotype score is 14 and am 42 years old / pre menopausal. I’m now faced with the decision of what treatment to take and basically everything is on the table - chemo, radio and endocrine therapy.

There was a recent study done end of 2021 which suggests a 5% (94% over 5 years) better outcome with chemo for my situation. See IDFS and DRFS Benefit Found in Adjuvant Chemotherapy for Premenopausal Women With HR+/HER2- Breast Cancer which is a complicated document for me to fully understand. At the end of the article there is a quote:

“It remains unclear if ovarian function suppression can replace chemotherapy in premenopausal women with hormone receptor–positive, HER2-negative, node-positive breast cancer,”

Whether or not I do end up choosing chemo, I will definitely elect to have radiotherapy and endocrine therapy, would even consider removal of ovaries. My question is, whether a 5% better outcome is worth the risk of having chemo, when one of the side effects of having chemo could in effect increase the risk of secondary cancer later on. 

I realise this is a rather in depth question, one that’s kept me awake for the last few nights! All thoughts, comments, suggestions welcome!

Many thanks

Clare

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…

4 Likes

Hi Cybele
I know this is an old post, but I came across it due to having a similar dilemma, and wondered what you chose in the end?
I have ER+, HER2- IDC (3 tumours, largest 2cm) plus large area of DCIS, 2/26 nodes positive. I’ve been offered the OPTIMA study, which will test my tumour and randomise me to chemo or no chemo (if high risk I will get chemo, if low risk it could be either).
I’m deciding whether to join the trial, or to pay for the test and make my own decision!
I hope your treatment went well whatever you chose.
Sarah x

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Sorry just realised I called you by the wrong poster’s name - apologies Clarebo!

Hi Sarah
I read your post and wondered how you are getting on and what treatment you opted for . I have an invasive papillary cancer ( oestrogen and progesterone positive) her 2 negative with a positive lymph node . I e had surgery now waiting to see the oncologist who asked for a Ki-67 test to determine treatment which may include chemo . I am 5 weeks post surgery and struggling with the uncertainty and I am terrified of chemo … would love to hear your experience. Thank you Julie

Hi Julie
Sorry you’re having to go through this. I hope you’re feeling ok after the surgery. Waiting for results is so horrible, I hope you will get yours soon.

I decided to join the Optima trial, and was allocated to the non-chemo arm - this means I was not in the control group (who all get chemo regardless of the outcome of their tumour’s genomic test) and that the outcome of my tumour’s genomic test was ‘low’ risk of recurrence. So I’ve gone straight to radiotherapy (5 days) and hormone therapy (Tamoxifen and ovarian suppression). No huge side effects on the Tamoxifen excpet possibly being a bit bloated, and just had my first injection for the ovarian suppression today.

On the NHS Predict tool my benefit from chemo was around 4-5% - but my oncologist said it’s really not clear whether or not people with my type of presentation (considered ‘bordeline’ or moderate risk due to having small tumour but some lymph nodes involved) get much benefit from chemo and/or if the benefits outweigh the risks. In the end I decided to go for the trial as it felt impossible to decide whether it would be better to go for chemo or not - now that I’ve been allocated to the non chemo arm I do feel relieved, but I also think if it had gone the other way I would have accepted it and seen it as doing everything possible to minimise the risk of recurrence. As I’m not having it I’m trying to do lifestyle things that could gve me a few more percent risk reduction like avoid ultra processed foods apart from on special ocasions, only drink a couple of times a month and exercise.

I’m very happy to chat privately if you prefer - please feel free to ask anything xx

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@bella05 what a horrible decision to make!!! It’s so hard. I can only talk about my experience but I’m comfortable with it. I had dcis, 2 x small grade 1 tumours. 2/25 nodes positive after mastectomy and full node removal. I’m 51 but still having periods so technically perimenopausal.

I was considered borderline by my surgeon and oncologist. We discussed at length how I could leave it now as I’m cancer free and ‘cured’ but how would I feel about that? I knew 100% that even though I wanted to run for the hills out of the room and start getting my life back … I HAD to give this absolutely everything possible to ensure it never comes back. I also know that I wouldn’t be able to be comfortable going forward knowing there was an option I didn’t take.

I have 2 boys of 12 & 14 so I want to be around as long as possible. If I was older, maybe I’d not have chemo but for me it’s an insurance I have to take out!!

At the end of the day, you need to be happy with your decision and then stick with it, whatever the consequences. For me it’s a real case of ‘short term pain, long term gain’

Let us know how you get on xx

2 Likes

Hi Donna
Thanks for replying to my post … I totally understand where you are coming from . These decisions are really difficult and none of the cancer treatments are easy it’s weighing everything up with the jnformation you are given and doing what works best for you … I too have 2 boys who are similar age (16 and 12 ) . How are you getting on with the chemo ? What type is it and how many do you have to get ? Are you having hormone and radiotherapy afterwards? I am also perimenopause. Sending best wishes for a good recovery … :mending_heart:

Hi Sap I’ve sent you a message privately ( I think ! ) not too familiar with this forum .

@bella05 Im starting chemo in June - onc was happy for us to have our family holiday first. I also have a bit of time now to breathe a bit and get myself prepared.

The plan is for 4 x ec and 4 x paxe (something!) every 2 weeks… then possibly radio and usual drugs for years after. To be honest I’m just trusting the medical team with the regime and not questioning it as I need to focus on my mental health through all this.

Any more thoughts on your situation?

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Hi Donna
That’s good that you can get a holiday with your family before treatment. Hope you manage to relax and enjoy every minute … it’s so hard to plan anything in this situation as you never know how you’re going to feel . I’m also up in the air with what the treatment plan will be . Seems I’ve had lots of time in between waiting for results then more scans, tests etc . I guess that’s all part of getting the best treatment plan . I won’t know what’s happening until I meet the oncologist for the first time next week . So trying to keep an open mind … trying to keep my mind occupied… I don’t know much about the chemotherapy drugs . There’s so much good information on here though . Let me know how you get on with everything. Best wishes