To chemo, or not to chemo, that is the question

So it has come to this.

A raging debate in my head as to whether it is worth undergoing chemo for an "at best" 2-3 per cent statistical reduction in risk of recurrence.

I waited a ridiculously long five weeks to see an oncologist post my surgery (right mastectomy for a 3,5cm tumour invasive IDC and non invasive DCIS), grade 2, 90 %ER+, 90%PR+, HER2-, very low proliferation rate of 5 per cent, no node involvement (three removed and tested during sentinal node biopsy).

Crammed into the end of a week where she had seen 50 patients, her eyes were hanging out of her head, she was in auto mode (including obviously taking me through some questions for research reasons without actually telling me that is what she was doing) and I was left with more questions than I'd entered with..and instructions to let her know of my decison re chemo by Monday (christmas eve), or tomorrow, at the absolute latest.

Oh Merry Christmas to me.

Presented with the stats that if I add Tamoxifen to my mastectomy, there is 15 per cent chance recurrence at 10 year mark, or if I add chemo, this will fall to 12-13 per cent.

Apparantly I am in a "grey area" -- not clear cut if there will be any benefit from chemo, with most of my benefit to come from hormone treatment (which is great).

I want to do everything to avoid this coming back. I'm 47. Plans for left mastectomy underway for later this year/early next year when I do reconstruction.

I know this is a very personal decision for all of us....but would love to hear from any women out there who have had to wrestle with a similar situation.

I left messages for my oncologist shortly after leaving her rooms with a question I had forgotten to ask...and she did not get back to me...either on the day.,..or the following Monday. I am going to do all I can to try and speak to another oncologist tomorrow (I can dream!)...but your feedback and experiences would be be invaluable.

Grateful this site is here...even though I wish I was indulging in my traditional read of a new novel on Boxing Day, instead of researching cancer, proognosis and treatments on line instead!

Hope everyone is having a peaceful day, whatever stage of the journey they find themselves on.

28 Replies

3rdcharmer
Member
13 years ago
my little girl is 27 LOL
racha
Member
13 years ago
Hi Dawngirl,

I was in a similar state just last month. Chemo or no chemo. Mine was 2.5 cm RB and micro metastases of one node out of 5 taken out. The more you read, more confused yout get. You go to all the appointments and come out toatlly lost. I can understand what you must have gone through. Luckily I have a good onco. She spent lot of time explaining how chemo was not beneficial in my case. So didnt really understrand why I was offered the choice? According to her being on Tamoxifen for next 10 yrs will reduce any risk of reoccurence. I took second opinion which was identical to what my onco told me. So decided to skip chemo. Am doing daily rounds of radiation and will start with hormone tratement in the new year.- not really looking forward to the tamoxifen part.

You look after yourself and hope chemo is easy on you. And yes keep the books handy or even some funny movies.

racha
dawngirl
Member
13 years ago
I wish I could relax...bit of a lot to do work wise in the lead up unfortunately which I really can't get out of...but I think I have spent too long reading on things I already know this afternoon...and it's raised my anxiety levels rather than reassured me....I have a great prognosis and need to not lose sight of that at the moment...but brain is tending to worry about the (smaller) bad prospects than the (much larger) good prospects of my diagnosis and I need to work on flipping that. Wish I had a little person to samba across the floor...might just have to imagine that instead :-). Ok, breathing, breathing and diving into a novel I go. Thanks again Kathleen.
3rdcharmer
Member
13 years ago
Always remember it is your body, your life, your everything and that you can change your mind later if you wish. Relax if you can till the big day. I was so scared on my big day and now i know it is not so bad at all. Tedious really. My daughter danced Gangnam style and Samba'd across the floor making me laugh so much. Time passed very slowly and very fast at the same time. Kathleen
dawngirl
Member
13 years ago
Thanks Leanne. Can't tell you how reassuring it is to read 'but see my mother have it 24 years ago at 48 and still here today - a healthy 72". We all have our own paths to tread, but I hope I get to follow in your mother's long footsteps so to speak. It's for this sort of reason that I have decided to have chemo, starting next Friday....the jury is still out on women with my sort of disease benefitting from chemo or not....studies underway as I type...just not prepared to risk it might be worth doing even though the current thinking is it may not be. So here goes...well everything. :-} x Oh and I will be in the care of a new oncologist .. one who is a breast cancer specialist... so I feel much better about that! x
dawngirl
Member
13 years ago
well i'm in. friday jan 4, it all starts. apprehensive. still don't 100 per cent know it's the right thing to be doing but nothing like the fear of recurrence to drive a decision! hope you're travelling ok. x
TonyaM
Member
13 years ago
It looks like you are making progress with your chemo dilemma.You are taking your time,doing your research and coming closer to a decision that you feel comfortable with - good for you! You are right - we don't want to live and breath cancer 24/7.It's good to do normal/fun things and you will along the way.Glad you have enjoyed reading a book other than a cancer book.I hope you have some funfilled weeks.

Tonya xx
TonyaM
Member
13 years ago
It looks like you are making progress with your chemo dilemma.You are taking your time,doing your research and coming closer to a decision that you feel comfortable with - good for you! You are right - we don't want to live and breath cancer 24/7.It's good to do normal/fun things and you will along the way.Glad you have enjoyed reading a book other than a cancer book.I hope you have some funfilled weeks.

Tonya xx
dawngirl
Member
13 years ago
Well I'm off to see a new oncologist in the new year (Jane beith at RPA in Sydney) and feeling a lot more comfortable to be in the care of a specialist breast cancer oncologist. Turns out the only reason I was not booked in with her is she was in the States at a conference learning all the latest. Ah, life and timing :-). I had a wonderful chat with my fantastic surgeon today who made the time to speak with me despite the fact my concerns have zero to do with surgery (Belinda chan at RPA). I'm pretty certain I'll be going the chemo route ... even if in my particular case I am very borderline as to whether there will be much benefit but I have to remember when I started on this journey I made a pledge to do everything possible to beat it and a maximum 2 per cent benefit may not be worth it ... but what if it is. No one can tell me. And at least I'm doing my bit to contribute to future understanding of what works and what doesn't :-). Thanking all you lovely ladies above who reached out to me in my hours of need. I have a few weeks up my sleeve before it starts so in between the work blitz to get things in place, there's going to be as many ocean swims as possible, as many good hair days as possible, and I'm going to devour as many novels as possible just in case the mooted chemo fog interferes with my capacity to concentrate on complex storylines. Lost myself for a few hours in Paul Auster's Brooklyn Follies today and DIDN't think about cancer as it related to me once ... although one of the central characters has lung cancer. It was bliss. Not thinking about cancer for a few hours. It does happen, doesn't it? That you eventually think abalmost etching else?! Hope so....I'm even starting to bore myself! ;-) x
dawngirl
Member
13 years ago
Well I'm off to see a new oncologist in the new year (Jane beith at RPA in Sydney) and feeling a lot more comfortable to be in the care of a specialist breast cancer oncologist. Turns out the only reason I was not booked in with her is she was in the States at a conference learning all the latest. Ah, life and timing :-). I had a wonderful chat with my fantastic surgeon today who made the time to speak with me despite the fact my concerns have zero to do with surgery (Belinda chan at RPA). I'm pretty certain I'll be going the chemo route ... even if in my particular case I am very borderline as to whether there will be much benefit but I have to remember when I started on this journey I made a pledge to do everything possible to beat it and a maximum 2 per cent benefit may not be worth it ... but what if it is. No one can tell me. And at least I'm doing my bit to contribute to future understanding of what works and what doesn't :-). Thanking all you lovely ladies above who reached out to me in my hours of need. I have a few weeks up my sleeve before it starts so in between the work blitz to get things in place, there's going to be as many ocean swims as possible, as many good hair days as possible, and I'm going to devour as many novels as possible just in case the mooted chemo fog interferes with my capacity to concentrate on complex storylines. Lost myself for a few hours in Paul Auster's Brooklyn Follies today and DIDN't think about cancer as it related to me once ... although one of the central characters has lung cancer. It was bliss. Not thinking about cancer for a few hours. It does happen, doesn't it? That you eventually think abalmost etching else?! Hope so....I'm even starting to bore myself! ;-) x