Forum Discussion
What would you do if you were me?
Hello everyone,
I have a big decision to make and need to get some different takes on it. This is my basic situation in dot point form:
- New primary dx. of Stage 2b ER+ PR+ HER2- right sided IDC with some DCIS in July 2026
- Lumpectomy and SLNB done three weeks ago
- Clear margins and 7 nodes taken, all clear but extensive lympho-vascular involvement on histopathology report
- Previous hx. of Stage 3a left sided ER+ PR+ HER2- IDC with some DCIS in 2016
- Had neoadjuvant FEC-D chemo, lumpectomy and axillary clearance, radiation and hormonal therapy in 2016 with complete pathological response
- Oh and lymphoedema in left arm just because why not add insult to injury
My oncologist says she and her buddies all concur that I need chemo again because of the extensive lympho-vascular involvement. She painted a very grim picture to me of possibly having a recurrence or distant mets if I don't do chemo again, but only do radiotherapy and hormonal therapy. She seems to think that some cancer may have slipped through my blood or lymph vessels and could come back as metastatic disease in the next few years if I do not have chemo, and could die within 2 or 3 years worst case scenario. My cancer is grade 3, KI67 45%.
I told her I have been utterly traumatised by breast cancer treatment personally, and having just lost my Mum to advanced lung cancer with brain mets last September, I am basically going to be unable to cope with the mental and physical damage that undergoing chemo again would cause. I cared for my Mum for 3 short months and threw away my whole life, work, health and everything to keep her with me as long as possible but it was not enough. I was beyond heartbroken to lose her and still have had no chance to truly grieve, due to having to now fight for my own life again.
I'm 48, single, no kids. I have no extended family still alive and living near me, and not estranged due to family grudges that I wasn't even a part of. I have PTSD and have been on worker's comp for a couple of years. I have a few good friends but they live in different states, and some are actually in their 60s and 70s, some younger than me. I live alone. I have to clean out and sell my Mum's house and use the income to live off until I can figure out what the next phase of my life will be. I'm devastated to have to have this all on my plate.
If you've read this far, thank you! Bear with me.
Can you please honestly tell me, having considered all of the above, if you would go ahead and do a second horrifying stretch of chemo, radiation and hormone blocking drugs, knowing the toll it takes on you even in 'ideal' circumstances let alone in my particular circumstances?
Would you want to live through the next 10-15 years after treatment only to most likely get cancer again and know you would not be able to fight it again?
Is quality of life and actually ENJOYING life, having freedom and independence, feeling like a woman, and not being a slave to this **bleep**ed disease more important than fighting all over again with no promise of success?
I'd really like to hear your thoughts. Thank you.
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3 Replies
Hi Summer_Prevails - What an incredibly difficult position to be in. 💗
Reading your post, I don't hear someone who has given up. I hear someone who is exhausted, grieving, traumatised by what they've already been through, and trying to make the best decision they can with a great deal on their plate.
I don't think there's a right or wrong answer here, and I don't think anyone else can tell you what they would do and have that fit your circumstances. We all have different values, priorities, support systems and limits.
Whatever you decide, I hope you feel confident you've had all your questions answered and have been given the information you need to make the choice that feels right for you.
For now, please be kind to yourself. You have been carrying an enormous amount, and it's completely understandable that this decision feels overwhelming.
Sending you a gentle hug and wishing you strength as you work through it. We're here to support you, whatever you decide. Don't forget the Helpline is here for you on 1800 500 258, we are here to help you talk through your thoughts or even just be a listening ear to get some things off your chest 💕
Commiserations - you have been through a rough time. Unfortunately, the decision must be yours - I am sure you recognise this, but of course it’s helpful to know if someone has faced the same dilemma and how they chose to do so. Tricky thing is that cancers are all rather different, so are treatments and reactions to treatments. I was 68 - twenty years older than you - when diagnosed. I had no reservations, I did what was recommended, mastectomy, chemo, herceptin and hormonal therapy (10 years). I was one of those who managed surgery and chemo pretty well - I still consider lymphoedema, an arrhythmia and peripheral neuropathy a relatively light set of side effects. Ageing (for which there is no cure!) has made the neuropathy a bit worse but still manageable. I was right - the 14 years since have been terrific ones in all sorts of ways. So to me the biggest question is what do you most want to do in the years ahead - because there may be quite a lot! If you have things you really want to do, and can manage that with some preventative treatment, just not all, then that may be the right path for you. Most of all, can you live with whatever decision you make, even if things don’t work out the way you want? In the absence of family or close friends ( who may not always be helpful in such decisions anyway) have you thought of consulting a counsellor about clarifying your own priorities and feeling confident about the path you most want to take? An independent trained ‘ear’ , who can help you to prioritise your own feelings rather than adding another set of opinions, can make a big difference. Very best wishes for the future - whatever lies ahead, the confidence to embrace it is very powerful.
I am SO sorry to hear of all you've been thru Summer_Prevails xx. My deepest condolences on the passing of your mother xx. Caring for her in her final months would have been very hard and the associated grief with her loss is just devastating. (I lost my husband to cancer 4 years ago, having cared for him on my own since his first diagnosis & then the final 2 years after diagnosed terminal. I am still grieving xx) BUT - He/we also had 10 fantastic years prior to the Stage 4 diagnosis (after his first lot of chemo.)
We have Carer's Corner private group, if you'd like to join & have a chat with those who know what you've been thru xx. You are now caring for yourself too xx
Group: Carers corner | BCNA Online Network
Also consider chatting with the Helpline on Mon (1800 500 258) for a confidential chat about 'things' xx. Do you have a counsellor available to you? You can also call the Cancer Council https://www.cancercouncil.com.au/get-support/cancer-counselling/#connectThat is a REALLY tough call - do I or don't I do the chemo again? Only you can make that call - BUT ..... you are still a YOUNG WOMAN and I am sure there are things that you would like to do. Maybe, do a road trip & catch up with your buddies in the other states after you've sorted your Mum's estate ....
Do you think your reluctance to go ahead with treatment may relate to you looking after your Mum? If you were a lot older, I'd probably say that quality IS better than quantity ...
Personally I'd be leaning towards having the treatment - can you get a 2nd opinion from another Onc, or are you 100% happy with your current Onc? Remember, she is saying what she believes is in your best interests xx
I don't envy you your decision making .... take care & all the best xx
