First Oncology appointment - what to expect/ask?
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@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?0
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Hi @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
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@Rr most have either lumpectomy or mastectomy prior to treatment I had lumpectomies then treatment. It depends on your circumstance. Xx
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I was diagnosed with lobular in December. All indications from mammograms, ultrasound and CT scans were that it was small - 2.5cm - and no node involvement. The surgeon (who is lovely and has an excellent rep) recommended a partial with sentinel node and said that I would definitely need radiation. He also said that things might change once he went in and the path report came back. He did a magnificent job of the partial - I was thrilled with it. Unfortunately, the results from the biopsy were not so good as the tumour was 4.5cm with no clear margins - too big for me to have anything but a mastectomy - and there were 3 nodes involved. So, back in hospital a couple of weeks later to have the mastectomy and axilliary dissection - all came back clear after that. That changed the course of treatment, though, and I am now partway through AC and Paclitaxol chemo - 6 months in all. Radiation will follow and then hormone therapy as the cancer was OR/PR + and HER -. My surgeon won't consider reconstruction until at least this time next year and I'm still undecided about whether I will do it or not. I think if I had both breasts off, I wouldn't even consider it, but who knows. I'll cross reconstructed bridges when I come to them!
It's nice to know the pathway that you are taking but things can change during the course of it. And the interesting thing about bc treatment now is that it's obvious that one size does not fit all.
Good luck with your research.
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I think it is. To be honest, I never questioned him about it very closely because it was the last thing on my mind at the time and I'm still not sure I want to do it.
Frankly, if I could go around lop-sided without it being an issue for everyone else, I would, but as much as I'd like it to be otherwise, it's just not socially acceptable. I don't see myself as "lost" without my breast and I don't think I'm big enough on the other side for it to cause much of a back issue. I don't really want further surgery and I find the bras and prosthesis a bit uncomfortable. No win situation, really. So, happy to wait a year and see where it takes me.2 -
After radiotherapy they sometimes wait to do reconstruction because of the damage to the skin and it can be really tight with an implant etc. I waited 2 years for reconstruction and it has been really successful.0
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I got told if I had to have radiotherapy it would be a year before I could have reconstruction but since it’s just chemo I could go ahead at any time. I’m going to go to a breast reconstruction evening if it fits in with work to get the lay of the land and find out what is involved and out of pocket costs. If I was in my 20’s or 30’s I would do it for sure but I’m not too worried about it apart from my lack of symmetry - probably if I would end up with really bad scarring that would prevent me for wearing even more clothes I might not do it.0
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Pretty much how I feel about it @Kiwi Angel0
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@Sister I have heard there can be hefty out of pocket costs even with private health insurance so I’ll just wait and see when I have more info. I’m still using my little post op berlei boob which works for me and I got a swimming boob but haven’t even got round to getting a proper prosthetic “everyday” boob yet.0
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I had no out of pocket expenses for LD recon with implant and reduction. Best to ask how much it will cost, recovery time, risk of side effects and best advice for recovery. Shop around, find a surgeon you like at a hospital you like and just ask the doctor how much they charge and how much the anaesthetist charges. You are a consumer and the best advocate for you. If you don’t like the price/ service go elsewhere. It’s also good to get a second opinion. All the best.1
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@Kiwi Angel I agree with @Rose18. Speak to you breast surgeon about your options. You can always put yourself on a public waiting list. That will give you time but hold a spot if you decide to go ahead.1
