I had my appointment yesterday to get my path results after bilat MX with permanent implants and was told the clinical team had heated debate about whether or not I should have radio. It was originally in the plan for me but as I had MX instead of lumpectomy and if i had less thsn 4 positice nodes ( had one) then i was told I would dodge that bullet! Apparently not now!
I had triple negative, grade 3, more than 2 cm cancer and am 41. These are the reasons for having it. However my tumour also had a complete response to chemo…the reason (amongst side effects) for not having it. It would seem that apparent complete responses are so new they don’t know whether to trust them and all the studies say for women with my criteria treat
This has really rained on my bonfire…I should be celebrating a complete response. Instead 2 weeks after a surgery i have yet to process and heal from and I now have to decide if I’m prepared to put myself through rsdio with all associated risks. I’m a belts and braces kind of girl but this is all tall order. I’m just feeling like me again post chemo.
Any reflections from those who have had radio either recently or in dim and distant past especially re major probs like implants messing up and heart disease would be welcome to help me make my decision.
I have just started radiotherapy 3 days ago having had a bilateral MX with permanent implants 5 weeks ago. I had triple negative, grade 3 cancer with no node involvement and I am 36. I originally had a lumpectomy and WLE thereafter so was supposed to have radiotherapy but during chemo I was tested for and found to have a BRACA2 mutation. I then elected to have the bilateral MX after chemo so there were some questions as to whether I would need radiotherapy as well.
My situation was slightly different to yours as I had chemo after the tumour was removed and I was recommended radiotherapy based on my pathology results (it was located close to the chest wall and some evidence of spread was found in the chest muscle). The BRACA 2 diagnosis also made me want to go for a belt and braces approach.
I was very upset when it was initially recommended to have radiotherapy as well It felt like one step too much for me to cope with and I had optimistically hoped that the bilateral MX would mean I could avoid it.
It’s too early for me to say what impact the radiotherapy will have on the implant and I have been advised that some people find their implant is ok and others find that it may harden. I am taking comfort from the fact that the implant could be replaced next year if there are any issues but I am keeping my fingers crossed as I would prefer not to have yet more surgery.
I am also having radiotherapy to my left side. My hospital offers deep inspiration breathe hold technique which I am having (it is not appropriate for everyone as depends on individuals heart position) but it was appropriate for me which I’m hoping will protect my heart. Maybe it is worth asking if it is available in your area?
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Hi gk, like you I was borderline for rads. I had complete path response after chemo and node negative before chemo. However my tumour was close to pectoral muscle and there was evidence of lymphovascular invasion.
I read a lot of research and found that there seemed to be an improved survival trend for younger women (ie under 50) who have rads post mastectomy.
My consultant who I know treats bc very aggressively recommended it and I felt that I needed to do everything to minimise chances of recurrence. However I understand it’s an under researched and controversial issue.
Well worth a blast or 15 to halt vascular invasion. No mention of that for me…its that darned triple negative! That some survived chemo in my armpit just shows how it can morph and become even more beligerent. Turns out in the studies I read that complete response doesn’t lead to 100% survival or recurrence prevention so a bit misleading and even more reason to suck it up.
I think I’m probably going to go for it - just needed my emotions to catch up with my head! Cheer leading from the forum ladies helps
Will check out deep breath thing as not sure what it is. My friend told me to cream up 4 x a day. Is it just aqueous or will anything else work?
Any cream, but start a couple of days before radiotherapy, and do it regularly. After chemo radiotherapy’s not exactly a walk in the park, but very doable. There’s some very useful info on our American Sisters’ site community.breastcancer.org/forum/70
Expect to feel tired - more as treatment goes on, peaking about 10 days after the last one, and try to add a few treats to make your trips nicer. We found a lovely coffee shop near the hospital (we had to travel to a different hospital for radio) and tried to make it feel as if we were visiting on holiday.
Thankyou, its so helpful to have views from someone who’s been through it. The timescale to ‘wait and see’ is a bit daunting though…I suppose we all just want it over and done with so we can get back to some sort of normal x hope all goes well for you, can I ask what your diagnosis consisted of?..Linda x
Its not without its risks and problems so make an informed decision. I wasnt going to do it of the risks were too great. That u r in the grey area (like I was) means u need even greater investigation because the decision u take u live with.
