One or both? - looking for similar stories for a chat?

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1

Hello,

I’m on here alot at the minute as my wife is currently undergoing chemo (taxotere) to reduce a triple neg 8cm tumour (it’s reduced to 6 so far!) in her right breast before an mx at the end of feb.

She originally had BC 9 years ago but it was a totally different type and she had a quad followed by chemo, rads and tamoxifen/zoladex.

Because she has now had it twice before the age of 40, the onc thinks she may have the genetic disposition so we are in a quandry to do a double mx or not?

anybody help/advise/get in touch etc as I’m sure it would help to speak to someone who went through or is going through something similar

many thanks

andy
x

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If the onc thinks there is a genetic predisposition, has he referred her for testing? I asked mine whether I ought to be thinking about an MX on my other side (had my right boob MX’d last September) and he said only to consider it if I had a genetic link and then referred me to the genetics centre. I am waiting to hear when they want a blood test to proceed with this investigation.

I don’t think you can make a decision on this without knowing whether there is, or isn’t, a genetic link.

I know some onc’s & surgeons are more ‘for’ prophylactic surgery than others, but mine was clearly not keen to encourage it “just in case”, and I have a high grade, high lymph node, high chance of recurrence BC, a family history and am under 40.

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thanks flora. We’ve talked to the onc about having the test but after we have dealt with this particular disease.

I guess there argument is that having a mx is not an end to the risk of recurrence which is what you have to remember but the question going through claire’s head is if I have got the genetic disposition to get BC, do I take control and remove another avenue for it?

its hard and I’m trying to help but I can see both sides of the argument and to be honest I just want her to get well

x

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Absolutely, I quite understand Andy. I may well chose to take control, and if another MX is considered a possibility I’d rather have it done at the same time as my reconstruction so that I am not having more surgeries than I have to. I am only half way through chemo, but am thinking of the recon (probably a year away yet) and wanting to get the right information before I am put on the spot or it is too late.

I guess because your wifes surgery is only a month away you don’t have so much time, but I (personally) wouldn’t rush into doing it without more information and the thoughts of the whole team looking after her.

Some people do find that taking control will stop them worrying about reoccurrence quite so much, but likewise, an MX is no guarantee that it won’t come back - just a reduced likelihood.

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Hi Andy

A difficult decision, but it’s one I made. I’m 50, dx last July, segmental mx in august, negative margins so mx with immediate, delayed or no recon was recommended. I got a second opinion who agreed with the mx, and then I decided to use the private cover provided by my OH’s company and go with him. (Another hard decision, strangely, because the breast unit I’d been at was fantastic and I feared I’d miss it, but haven’t really)

Originally, I was horrified by the thought of any breast surgery, and the news of mx was devastating. (I was warned at that same session that I might need chemo too, but in the end haven’t needed it).

I had quite a long time to decide about my recon (I knew I wanted immediate) because the previous surgery had to be completely healed. My only option was implant or LD flap with implant. I spoke to people who’d had single and bi-lat mx, I read and researched, and found this forum very useful and had some lovely help.

But then I had a nagging feeling about genetics (Dad’s mum had BC and my Mum had ovarian cancer 2 years ago), so I had a genetics counselling session. I decided not to be tested for BRCA because I felt there may be many other genes which they haven’t identified yet. I think I’d already made my decision by then anyway.

In the end I knew that if I didn’t have the bi-lat, I’d have wished I had. Oh, it’s important to add that I’d have had to have reduction surgery on the ‘good’ breast anyway, at a later date, so it was never going to be untouched.

My surgeon left it to me to decide. Apparently it’s more common in the US than here to have Bi-lateral. He told us he found that patients who had made their own decision were the ones who were happy with it. Those who weren’t 100% (if that’s possible), were not as happy and confident , afterwards in whatever way.
My OH left it to me, but has been totally supportive throughout of my decisions, as I think you are of Claire – I’ve read your posts before - you’re similarly strong. It’s so hard for you watching us go through this.

So I had bilateral mx with Beckers expandable implants in early December.

I think I’ve rambled enough. The upshot is, I’m very happy I’ve had them both done and it’s going well! 7 weeks post surgery now.

I’m very happy to answer any questions about the decision, surgery, recovery…

Claire must be looking forward to finishing chemo. A big achievement.

All the best
River

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Hi Andy,

I was dx’d with bc on one side and felt very strongly that I wanted to have the double mx straight away (with immediate reconstruction although that was more of an afterthought). I was 35 at the time and my mum and grandma had both died from bc at an early age. At the time (and still now) I had no diagnosed genetic fault. The surgeon made no attempt to dissuade me from what is, after all, quite a drastic course of action. I have never regretted the decision to have double mx. Also, usually, the results from reconstruction are surprisingly good although mine weren’t because of poor margins and radiotherapy but that’s another story.

Later, I went on to have the BRCA1/2 test and those came back negative although they still think it’s likely to be genetic (and I am convinced that it is).

Had I not requested the double mx straight away, I doubt that it would have been offered to me. The surgeons do seem to want you to be proactive about preventative surgery and I can see why - you need to be very sure that you’re more afraid of taking any chances than you are of the surgery and results themselves.

As for genetic testing, I would try and get referred for this as soon as possible. There is nothing to the test itself - they just take a blood sample. However, it is a bit slow to get the results - several weeks or months. There are other implications as well, if it comes back as BRCA1 or 2 - your wife may need to consider ovary removal when she is older - I think the risk of ovarian cancer in BRCA carriers is from the 40s onwards.

Take care,

Nicola

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Dear Andy

I am facing a decision similar to that your wife has to make, and have also found it hard.

One thing that I am mindful of is that a negative result from a genetics lab will not mean I am not a gene carrier. The science knows of a number of genes that can cause breast cancer but the tests can only identify some of them and not others (one reference on this is
cancerhelp.org.uk/type/breast-cancer/about/risks/breast-cancer-genes).

With best wishes

Lampochka