@FairyWren7 I'm a rare case too, that is my MDT (and I'm at one of the biggest breast cancer hospitals in London) have never seen someone with both BCRA1 and BRCA 2 mutation. I bet radishes never get cancer. How I wish both of us could be radishes in this instance!
What I thought might be a brief interlude is now turning is to a long hard slog. I worry that they'll really throw the hard chemo at me. Can I ask what drugs you had and how many cycles? Am seeing the oncologist on Monday but am trying to focus myself in advance so I don't go into shock if he says something I wasn't expecting. (I've got a 30+ year history of fibroadenomas, so have many lumpectomies under my belt. The radiologist and consultant at my initial appointment were both certain I just had a few more, cancer wasn't on their radar, let alone mine. Even when I got called in, it never occurred to me I might have cancer. Have never been so caught out in my life and determined never to be again!)
Due to my (and my family) history, I opted for a mastectomy as the outset, and because I wanted to avoid radiotherapy. I was actually offered genetic testing a decade ago (after lump number4), but declined. Even knowing how it paned out, I would do the same again. And now I know I have both BRCA mutations, I just don't want any more surgery, after all, even though I have a far greater probability of developing another primacy BC and other cancers too, I might not, I might even be hit by a bus tomorrow. If I get another lump in my remaining breast, I'll have another mastectomy. But until then, I'll carry on as I am. Am going to Great Ormond Street to discuss everything with their genetics team, so will see how I feel after that. And should I decide to have a the remaining breast removed as well as my ovaries, this will not be happening any time soon, and most certainly not until I finish the chemo and radiotherapy merry-go-round.
Am so pleased that you're nearly out the other side. Where are you with everything? And yes, please, I might just take up your offer of a chat.
I think one of the most difficult things about cancer is that you never really know where you are. Once you have a handle on things, it's subject to change, many times over. I no longer think of things a bad news, just unwelcome or unexpected news. It's definitely been good for my mental health to view it like this.
@Hiris I don't mean to sound unsympathetic to your plight, so apologies if I do so, even though it's entirely unintentional.
You say it's due to cost that you feel they won't do further testing on you, but this isn't it at all. Giving someone unnecessary chemo is far more expensive. Nottingham prognosis isn't the most accurate, NHS Predict is better. What you need to consider that with no lymph node involvement and only a grade two tumour means that you're not high risk. It's that simple. Ultimately, and again, I must apologise, but you're not a breast cancer professional. You can read all the studies you like, but your MDT, and remember, it's a team of people, not just one person who discuss your results and they decide on the most effective form of treatment. If there had been anything in your pathology report that was cause for concern, they'd have sent your tissue for Oncotype DX. The MDT see all sorts of cancers and they have a pretty good idea who needs chemo and who doesn't. Personally, I'd be thanking the gods to have been deemed unsuitable for it. I know I would love to give it a miss. By all means, pay for your own testing if it gives you piece of mind. But, before you do, maybe consider getting a second opinion from a different hospital, if only to put your own mind at rest. Good luck, however you proceed.
As your team have probably told you, your cancer (and treatment plan) is unique to you, so what my plan is, is of little relevance. However, and as you asked - at first diagnosis, I was told lumpectomy, radiotherapy and ET, pending MRI. I had other lumps, only one of which has been biopsied because all had shown as M2, and only one had shown as US3, so they biopsied that one. I knew the MRI would prompt a guided ultrasound, which it did which resulted in a further three core biopsies (in one go). Ouch. A liver scan later, benign, thankfully, my surgeon called to say that they had found a second focus of grade 3 cancer, so they were recommending a mastectomy, something I had already decided on due to wanting to avoid radiotherapy. Plan was then - mastectomy, ET and oncoptype testing. On return of the pathology report, they told I needed radiotherapy after all. At this point, I had to be open to the very real probability chemo would be a shoo-in. And it was. Will find out the exact details when I see the Oncologist on Monday.