Forum Discussion
58 Replies
Sort By
- EastmumMemberHi @RR - it's so difficult when you're getting mixed messages!
I agree with @kezmusc that your surgeon is recommending whatever is best for your situation. I was exactly where you are now, just a few months ago. I was never recommended to have neo adjuvant (pre-surgery) treatment even though I chose to delay my surgery by a few weeks. My cancer was lobular, very slow growing and very hard to detect - I probably had it for over a year without realising it.
There was no way of knowing exactly what kind of treatment I would need until the breast tissue had been removed and we had the pathology results back. From the biopsy, they knew that my cancer was ER & PR + and HER 2 -ve and that information didn't change, but all the scans suggested that there was no node involvement and it was only during surgery that two sentinal nodes on my left side came back positive for cancer. That meant that I had a full axillary node clearance on the left, during the mastectomy. If I would not have had any node involvement, I probably wouldn't have to have chemo.
In addition, the tumours in both breasts were much larger than anticipated prior to surgery. So in my case, everything they learned during surgery and from the pathology after my double mastectomy, has informed the treatment that's been recommended to me.
What really helped me in the decision stage was to get information through consultations with other doctors. The decision I had to make wasn't the same as yours ie whether or not to have chemo first or surgery first - I had to make decisions about reconstruction options ie whether to go for immediate reconstruction or expanders first. Like you with the chemo uncertainty, I had radiation uncertainty, so before I made my final decision I booked in for a consultation with the Radiation Oncologist. She was absolutely amazing. She explained all about radiation, how it's done, what the side effects are, how it impacts on different kinds of reconstruction, and most importantly, what the indications were at that stage, as to whether or not I would need radiation. Even though radiation is far down the line for me, she was invaluable in helping me make the decisions that I needed to make right then and there, at the time of surgery.
Is there a possibility of asking your surgeon to refer you to a medical oncologist to get this kind of information? He/She would be able to explain the difference between neo adjuvant and adjuvant treatment and the pros and cons of each, directly related to your diagnosis. In my case, my pre-surgery radiation consult gave me the affirmation that what my breast surgeon and plastic surgeon were recommending to me were absolutely spot on and I went into surgery confident that I was doing everything that was 100% right for my situation. It gave me enormous piece of mind and comfort.
Sending you lots of hugs! xxx - kmakmMember@RR I had a wide local excision to remove my tumour, a re-excision for margins, chemo, and then a bilateral mastectomy and reconstruction. We're all different, with different cancers. I know there are lots of people here who had mastectomies first, and chemotherapy after. @Eastmum is one that springs to mind. Did your oncologist clearly explain why they want you to do it this way?
- RRMember@kezmusc - yes, I am sure - I just hate wasting time and going around in circles. I thought I had time to think about the surgery options, and now I have very limited time. I am hoping I can get some advice from this wonderful group.
- kezmuscMemberHi @RR,
Although I had lumpectomy not mastectomy I had my surgery first then chemo. I am sure they are recommending what's best for your situation. It gets confusing when the plan changes.
xoxoxo - RRMemberHi @Eastmum, thank you for thinking of me. My appointment turned my previous advice a whole 360 - I am totally confused. The oncologist wants me to have surgery first - full mastectomy - before chemo in the hope that my chemo would be able to be reduced. Does this sound right? Has anyone had a mastectomy before surgery?
- EastmumMember@melclarity - I've also been to every appointment on my own - totally prefer it that way :)
Hope it all went well this morning @RR - jennyssMemberDear @RR, Yes, the folder idea is very good. I had one that got me through my first six months of appointments and treatment. Best wishes from jennyss
- Kiwi_AngelMember@RR - great advice from @melclarity about keeping your pathology results. I got a little zip folder that is kind of like an A4 pencil case when all this first started and I keep all my information, receipts, pathology etc in that folder and take it to every appointment with me. Good luck xoxoxo
- melclarityMember@RR all the best for your appointment tomorrow. I've always done my appointments alone since my first diagnosis in 2011 and again 2015. I never wanted to have to worry about someone else and how they felt, rather than just focus on me and deal as best I could. I didnt need an oncologist 1st diagnosis but I did the 2nd so I knew I needed more than radiation. They will be straight to the point with your diagnosis and their recommendation of treatment based soley on your diagnosis. I didnt have to ask about cold caps, my Oncologist was up front about that for my regime it's never been successful. If you purely had taxol possibly then. Lots of ladies have done it, some successful, most not. Certainly lots to think about. My Oncologist gave me 48hrs to get back with an answer and he said if I couldnt make the decision in that time then that would be clear its not a path I wish to travel. I did travel it however. So just ask them to keep it simple even ask for a copy of your pathology. Hugs xo
- RRMemberoh, @Sister - you are a blessing xx