Hi, I am BRCA1+ and was diagnosed with TNBC in both breasts on first screening MRI last August, Grade 3 2cm one side and Grade 2 1cm the other. I had bilateral mastectomy, one node removed one side and three the other - all clear - and am due number 5 of 6 FEC chemotherapy. I’ve been told I won’t have radiotherapy, presumably as clear margins on surgery, but am a bit anxious about this decision, particularly as reading here most seem to routinely have radiotherapy after chemotherapy. I’d be interested to hear from anyone else who hasn’t had radiotherapy. BB
Hi busybee
Whilst you await replies, I am posting a link to the BCC publication about radiotherapy which you may find answers some of your query, you are also welcome to call our helpline where you can speak to one of our specialist nurses, the line is open 9-5 weekdays and 9-2 Sat on 0808 800 6000:
breastcancercare.org.uk/upload/pdf/bcc_radiotherapy_final.pdf
Best wishes
Lucy
Hiya - I had left mx, though I was ‘borderline’ for wle, but knew if they didn’t get margins I’d be back in for mx, so opted for mx straightaway, in the hopes that I wouldn’t need rads…
I had one node affected (1+ - spread into capsule around node too), but initially was told no rads necessary. Chemo, but no rads. Then onc. went back over my pathology report, and noticed that my clear margins were only 0.9mm, and she would want to see 2mm clear as minimum - so I will have rads. But what I’m trying to say, is that I’m 41, so young enough for everything (or so I keep getting told), but wouldn’t have automatically had to have rads - in fact, after mastectomy, it’s much less usual to need them - so don’t worry on that score. If you really want to be certain, ask your onc what your clear margins were… over 2mm and you shouldn’t need rads.
Hope that’s of some help! And I do understand the feeling that we ought to throw everything at it… but no point doing extra if it’s not likely to have any effect whatsoever.
Sophie xxxx
(Forgot to say, my lump was 3.2cm, Grade 3 - and it is still just the clear margins that dictated rads or not. xxx)
Thanks for your reply Sophie. I hope to discuss this at my next appointment and will ask about the margins. Think I’m just finding the thought of chemotherapy ending soon and no more treatment a bit daunting. As you say I don’t want to go through it if its not going to have much benefit, so am hoping for reassurance from others who haven’t had radiotherapy. BB
Busybee, I am NO expert and AM having rads myself, BUT I would have thought one benefit of not having rads is that at least it won’t generate cancer later. I know several people who have gone on to have new primary bc tumours later that they have been told was probably caused by the radiotherapy for their initial bc treatment.
Was your cancer triple neg? Just wondering because you didn’t mention any hormone treatment following chemo.
Jo XX
BB, my initial treatment plan was WLE followed by rads and hormones, plan upgraded after lumpectomy to include chemo and Herceptin. As I didn’t get clear margins I had a re-excision and am waiting for those results and there’s a possibility of mastectomy being necessary if margins are still unclear.
I asked my BCN if I would still need rads if mastectomy turns out to be necessary and was told that because the deep margins (back towards the chest wall) were clear, that if I had a mastectomy it is highly unlikely that I would need rads because the margins would almost certainly be plenty clear enough, unlike Trip’s turned out to be. Obviously that’s not 100% guaranteed (what ever is?) and your cancer could be in a different position and so on, but I was happy with that as a reply, because WLE plus rads is offered as an alternative to mastectomy, not as an alternative to mastectomy plus rads, so I’m relaxed that mastectomy is offered as an alternative to WLE plus rads, if you see what I mean.
I’m still going to have to have chemo, Herceptin and Tamoxifen, but if I end up needing mastectomy, it’ll probably be no rads for me. Might even be able to go for immediate reconstruction if that’s the case. (That last bit’s just me trying to figure things out rather than them telling me that.)
Hi, didn’t have rads last year (aged 45) after mx and full ANC. The NICE website has the general guidelines when rads are offered/not offered. I did fec/tax Chemo, multifocal ILC. In the end the final decision is made by your onc and they must weigh up the side effects with the benefits for you. But rads are by no means a routine treatment for all BC. X
Thanks for the pointers to NICE guidelines and your experience re Radiotherapy Tina which have helped a bit. I would still would like to discuss with my oncologist as a relative who originally only had chemo died last summer, but another who had rads too has had no recurrence [all BRCA1+ triple negative]. BB
i had WLE chemo and rads but only because i wasnt having an Mx if i had the Mx i wouldnt have needed the rads.
the radiotherapy only reduces your risk of recurrence but doesnt prevent it… the relation who didnt have rads may have had more aggressive tumour eg larger or higher grade or had more nodes involved or maybe differnt chemo or the tumour may have been in a different part of the breast etc… there are lots of variables but each patient is assessed on a an individual basis and just because something happenend to your relatives doesnt mean the same thing will happen to you too.
speak to your onc and tell him your worries… you might find it helpful to wwrite down all your questions.
Lulu x
Hi
I had mastectomy and didn’t have rads. I did have chemo tho. I had grade 3, 3.5cm tumour and 1 lymph node affected.
My oncologist told me that he didn’t know if I needed rads or not and wasn’t sure the long term risk would out weigh the short term benefits.
There is a trial called the supremo trial to see if they can determine whether rads are necessary or not with people who have less than 4 lymph nodes involved. I’m on this trial and will be monitored for 10 years rather than 5.
Not all hospitals are involved in the trial but it maybe worth enquiring about.
Not sure this helps
Chris x
I was dx 4 years ago next month. trip neg 2 nodes affected and 2.7 tumour. Had mast and chemo, but no rads. I was offered the trial.
here i am back on the site using the lymphadema page. No evidence of cancer, but struggling with my condition.
I had 9 nodes removed and think with rads, I would have got this sooner. I am young, slim and active and thought would not happen to me. (where have I thought that before)
Trip negs respond the best to chemo out of everyone else
Hope this helps xxx
I have been reading posts for a few weeks, diagnosed 30 dec, WLE surgery 25 Jan. Was orginally tod i would have to have Radio Therapy and hormone treatment for 5 years ago. Earlier this week, Wednesday i was told that the lymph nodes were clear and the tumour was 33mm in size. Do to its size they made an appointment to see Oncologist today, i see you have post link about Radio Therapy, is there one for Chemo. They said today that i would only gain a small benefit from Chemo and the biggest benefit will come from the RT and Hormome treatment. It is hard to make a decision as to whether i should opt for chemo and i have read about the treatment but it doesn’t really tell you about the pros and cons to help make a decision as to whether or not to go ahead with it or just opt for the RT and Hormone T. I see others have had a pathology report telling them the margins etc, i have not had that yet. By the way i was diagnosed with agressive Lobular BC, and they told me on Wednesday the margins are clear, but i do not know what the margins are yet. They have told me i must have the RT but the chemo is my decision. June