I am 41 and recently dx grade 3 TN rt bc (Oct 2010). I have had bilateral mx (left risk reducing) with immediate reconstruction & am having FEC-T 6 cycles. Radiotherapy has been mentioned but my app with Consultant not til end Jan 2011. I’m unsure about having Rads because of possible damage to implant and thus further surgery. It was also mentioned about the unknown benefits of rads for 2/13 lymphs and that I might be able to take part in the SUPREMO trial at the Marsden. Does anyone have any advice or knowledge of this trial? Many thanks :o)
Hi Heather
My advice is to take any treatment you can get your hands on!! I was diagnosed with tnbc in January and only had one affected node, no vascular invasion etc. Had mx then chemo and rads were not advised due to clear margins,just 1 node, lump under 4cm etc etc. Anyway, I had a serious local recurrence within weeks of my last chemo- cancer spread to my chest wall and skin so had a huge operation and intensive rads which seems to have done the trick (*touches wood*). However, I have been told that progression is highly likely now and I am being scanned every 3mths. My onc has admitted that if I had had rads, this would not have happened 
So do it- local problems may be unlikely but they are possible and if it happens, your implant will b the last of your worries (Im now concave and look like Ive been bitten by a shark).
This isnt meant to scare you (I was really bloody unlucky)- I just dont want others to go through what I have and rads is such an easy treatment after chemo so do it if you can 
All the best
Tina x
Tina,
I have been wondering how you are doing. Well done for being do candid with your post. Wish I could reach out and hug you.
Vickie
xxx
Hi
I had a mx and full lymph clearance in Nov 2006. Like you I had 2 out of 36 nodes positive. I was told I didnt need radiotherapy, only chemotherapy (8 sessions of epi/cmf) they did say I could go on a trial of radiotherapy but it would only be a trial and would be of no bebefit to me. I thought long and hard about things and decided not to have radiotherapy only the chemo. The drs were happy with my decision. 4 years down the line I am having reconstruction on 14th dec, thats hoping weather eases up and I can get through to the hospital for my pre-op on Fri. Hopefully this post might help you
Take care
Carolyn x
Hi Heather,
I’m in a similar situation, I had 2 grade 2 tumor both under 2cm, then a mx and node clearance, 1 node out of 12 and I’m just finishing chemo last one tomorrow, hurrah!! My onc has left it up to me to decide about Rads, he would like me to have it but doesn’t know if it will be beneficial to me. I have also been offered the Supremo trial, I am tempted to join the trial as it takes the decision away from me. I have been given lots of paper work to explain the trail but I also found this website, hope this helps you.
It’s a hard decision to make isn’t it, good luck with your Chemo.
Grace xx
Hi
I had 3 nodes involved, but did have some extra-capsular spread. RAdiotherapy is recommended because of the spread and I’m going for it.
I understand absolutely why you wouldn’t though. i didn’t first time round (this is a recurrence). But this time, the onc has said there’s been a lot of research done in the last 5 years on benefits of rads and while it was once thought it didn’t save lives, only local recurrence risk, it’s been found to increase our statistical chance of survival. You’re lucky to be treated at the Marsden - I believe they have the latest equipment which reduces risk of SEs.
Best of luck xx Jane
Hi
I was diagnosed with breast cancer last May and had a right modified radical mastectomy with immediate reconstruction using muscle from my back - no implant.
In January 2010 I start my chemo 3 fec and 3 tax. I had three weeks of rads and I’m on my 11th herceptin. I’m also taking tamoxifen.
My results after the mastectomy were grade 3 tumour, widespread DCIS, 2 nodes positive out 21, HER2 positive.
Radiotherapy was a breeze and apart from a bit of swelling that is the only side effect from it. I’m glad I had radiotherapy as I felt that the oncologist was doing everything to help my 5 year survival rate of 65% .
Good luck.
Thanks to everyone for all your replies and advice.
I must admit after reading them all I am veering towards going for Rads and any implant problems will have to be dealt with down the line.
thanks again…really appreciate these real life experiences to guide my decision making :o)
I knew I would find answers on here. I saw my oncologist today and she suggested I go on the Supremo trial. Before I had surgery last October, I was told I would need radiotherapy but probably not chemo. However, after surgery, they upgraded the cancer to grade 3 and so I had to have chemo. I’m about to have the 5th out of 6, so I asked the onc when RADs would start and she then said I didn’t necessarily have to have RADs because there were clear margins, no lymph node involvement and the cancer was 4.8cm and it’s not always necessary if it’s less than 5cm. No-one had ever said before that I might not have RADs. She then started talking about the Supremo trial. I am minded not to do it because I want to decide whether to have RADs or not - if you go on the trial, a computer decides at random whether or not you get RADs. My friend suggested I say yes to the trial but then withdraw from the trial and demand RADs if the computer puts me in the ‘no treatment’ category. The only advantage to me that I can see from doing the trial would be that I would get annual follow-up checks for 10 years, which I won’t get otherwise.
I did ask the onc what she would do if it was her. She said she couldn’t advise me. Triffic, I’m not medically trained, how am I supposed to decide whether to have RADs or not?
I finished chemo in February 2010 and 25 rads at the end of March 2010. I had 2 lymph nodes positive. I chose to have radiotherapy. I not offered a trial on radiotherapy but I was offered a trial on herceptin. It was to trial is 9 doses as effective as 18. Again you are chosen by computer. I chose to have 18 doses, I decided you only have 1 life and I did not want to look back and find out 9 is not as good as 18. I felt it had to be my decision not a computers. Radiotherapy is ok, certainly compared to chemo or my mastectomy. Nearly one year on I have no regrets, I have given it everything I could.
If you are chosing to do it for the follow ups, check what you would get anyway. At my hospital we get follow up appointments for 10 years at the breast clinic and oncology clinics. If it for the follow up tests think carefully as lots of tests if there is nothing there can have its own risks which is why they are not done routinely whether you are being seen privately or on the NHS.
good luck with your decision, its not easy to chose just make sure it is one you are happy to live with. I know I agonised over the decsion, but once I had made it I was much happier and I do not regret it
Marian
Hi Nottsgirl
I’m not a doctor, but now I’m halfway through radiation at the Marsden, I’d say go for it.
Since I posted here in December I did find out my cancer had spread to a node just below my collar bone which gives me more incentive to be irradiated, but even without, I think I’d go for over-treatment rather than under. Although I’ve had mx and lymph clearance, I’m having chest wall, underarm, clavical and neck done. There was some discussion between the doctor at the Marsden and ‘my’ team in Brighton, mainly because of the extra risk of lymphodema (20% instead of 10% if underarm done) but the Prof at the Marsden agreed that it would halve the risk of cancer returning under the arm and if my main aim was to stay alive, then go for it.
Best of luck deciding. xxx
Thanks Marian and Jane. I’m a bit calmer about it today. The onc said there are risks of damage to lung and heart from RADs but I think if I had to have RADs she wouldn’t have told me about those risks. After all, they were very brief about the risks of chemo.
And Marian, I will have herceptin after - and like you I want the full course, not a trial.
Best of luck to both of you and thanks for helping.
Pam x
Heather,
I just wanted to say that I have had rads after an implant and am now 16 months down the line and have seen no noticible change in my recon thankfully. Like you I was very unsure but decided to go for it. My rads were given over 25 sessions rather than my units normal 15 to reduce the likelyhood of damage.
Good luck
Dot
xxx
Hello again
Well, I’m just over 3 weeks post-rads(15 sessions was decided on by team in the end) and unfortunately I’m experiencing quite a lot of muscular and rib-cage discomfort; movement, coughing, sneezing and especially in bed at night turning over are all painful). The problem didn’t surface until about 5 days after my last treatment so I went to the GP to get some pain killers (just ibuprofen/paracetamol). I rang the hospital who said it was too early for them to assess anything but I just wondered if anyone else who has had mx with immediate recon using implants experienced anything similar after rads…?
I really wasn’t expecting such a strong reaction from rads as so much I’ve read talks about it being so much easier than chemo. So for that reason I’m feeling more down about things than I thought I would be at this stage, I’m not able to physically do as much as I was pre-rads and it’s also delayed my return to work.
All thoughts and words on the matter appreciated…
xx