I’m a newbie to the site - you all seem very friendly and helpful and I’m looking for any one who has had a similar experience to me.
I had a mastectomy and immediate LD flap + implant recon at the end of Jan. Now 1/2 way through chemo (6 x FEC-T) and just been confirmed that they are recommending radiotherapy.
My cancer was lobular, there was a margin to chest wall, but only small (1.7mm), luckily all lymph nodes removed (15) were clear, so radiotherapy will be to chest wall only.
I knew at the start that radiotherapy couldn’t be ruled out and of the potential complications, but decided to go ahead with the recon after discussions with both BC and plastic surgeon and with their full support.
(My situation is slightly complicated by the fact that I had the surgery in Suffolk, but am now in Shropshire for the follow-up treatment. I get the immpression that they don’t seem to do immediate recons much in Shropshire.)
My oncologist said that I would have 15 treatments, but he mentioned that some consultants spread it over 25 if there’s been a recon. Not sure if I can/should ask for this.
Has anyone had a similar experience? Any advice/info would be much appreciated both on immediate decision and longer term side effects.
Can you get back in touch with your original plastic surgeon who did the reconstruction for you and ask their advice? They, along with your radiotherapy specialist, will be in the best position to know what effects the radiotherapy is likely to have, and any remedial actions which may become necessary later.
I plan to have a word with both the plastic surgeon and the BC surgeon - I know that they had a MDT meeting about me before I left Suffolk and it would be interesting to see if their conclusion was any different to the MDT team in Shropshire.
I had a immediate LD recon in July 2008. In July 2009 I had a small recurrance just under the skin. I had WLE and was told I needed rads. I was so worried that it would ruin my recon. However, my rads finished Oct 2009 and apart from a slightly suntanned square there has been no damage and my recon is as good as new!
Rads have changed a lot over the years and cause much less damage to the breast (hardening/fibrosis) than it used to.
I had mine over 25 fractions instead of 15, you still get the same amount in total ,just more spread out.
Hope this helps
Dot
xxx
I finished RADS last Wednesday on my reconstructed LD flap breast. I was originally told I didn’t need rads so had immediate recon, but after I finished chemo I was then told it was up to me whether I had them or not as I was so borderline for rads! Difficult decision! However I went ahead and had 25 lots finishing last week. I was told that this was because I’ve had a recon and that they give the same dosage but over 5 weeks rather than 3. So far I’ve had no problems apart from a suntanned boob. I’ve applied loads of cream three times a day, worn a very loose fitting bra and continued with my arm exercises every day. (I had rads to my chest wall).
I contacted my surgeon beforehand to see what he thought and he recommended I didn’t have rads saying it could affect the implant and I didn’t need them! My oncologist was very annoyed with this comment and told me it was up to her and me to decide and he had no right to say this!! I also need cosmetic surgery on my other breast at a later date to ‘even me up’ and thought if I had a problem with my implant I would have it replaced at the same time. To me it was important that I had all the treatment I could to prevent any chance of this coming back.
I hope this helps. You can PM me if you wish and I’ll keep you posted on my implant progress.
Your thinking is the same as mine. I guess if we are going to get capsular contraction it won’t start to show for a while - my PS said it can take up to a few years before it gets that bad that you need it removing and a new implant.
My recon boob is slightly bigger that the other, and I have a port in the implant where they can pump it up or let it down, so I’m hoping that if I only get minor shrinkafe and contraction, they can let it down a bit and that will do the job.
Fingers crossed that we both escape! I still don’t regret my decision to have an immediate recon. Various studies have shown that we can do better mentally and physically, and even if I do need to have another op, my PS says that the end result will still be better than many who have a delayed recon.
Hi,
I finished 4 FEC and 4 TAX 3 weeks ago. Just been to see my consultant today to arrange masectomy. I had heard you can have an expander put in straight away to save the skin ready for a bilateral reconstruction in 6 months. The oncologist says I can have radiotherapy having had the expander. Has anyone else heard of this and is the radiotherapy as effective?
I’ve got to see PS next week to discuss it but if breast surgeon and PS can’t match thier schedules soon enoguh there won’t be the option of this. If they leave it too late they have mentioned that cancer cells might start to ‘grow’ again.
I’m so worried and confused becasue there seems too many options. I know it’s nice to have choice but my head is spinning, it’s such a big decision to make. My head hasn’t recovered from chemo yet.
Mandy
What you describe is quite common for women having an mx where they think that you will also need rads.
The more skin you can save now, the better the final result when you have recon - fewer scars on the breast area and less skin to be taken from somewhere else.
The implant won’t affect the effectiveness of the rads, but it is likely that the rads will affect the implant - that’s why they do the temporary ‘fix’.
I’m sure your surgeon will be able to explain all this when you see him, but i hope this has helped in the meantime.
Lot of similarities between us, except I had a simple implant reconstruction at the same time as mastectomy. Halfway through (FEC) chemo and need to make a decision afterwards about radiotherapy. Like you, my surgery was at a different location to my follow-up treatment. It looked at one stage as though radiotherapy would not be recommended although the surgeon was still happy to do it whatever. I now definitely fall into the category where it is recommended to the chest wall and I feel pretty certain I will go ahead. The irony is that the surgeon is quite happy with this but the oncologist (in the different location) has doubts! Where I am now, they don’t like doing radiotherapy on implants and would not have sanctioned immediate recon! They do say it will be over 5 weeks not 3 however. My advice would be to do everything the surgeon advises - it’s his/her work after all. I have no regrets, my rationale being that if I need a ‘tweak’ after, I’m in no worse position than if I’d had an expander and in a better position than if I’d had deferred recon. Good luck with everything and be great to keep in touch.
Isn’t it uncanny how when we get on this site we find someone or more who have ‘been there done that’ I had BC 14 yrs ago had mx/ imm recon then chemo and I refused RADS I did this on the basis that I was told it was ‘belt & braces’ I opted to keep it (RADS) in reserve if ever there was a local recurrence, thankfully so far there never has. I was living in Edinburgh at the time and the BC unit there was ( and still is ) a center of excellence. I mopved from Edinburgh to the welsh/shropshire border 12 years ago but I have travelled each year to Edinburgh for annual check up and tied it in witha holiday. Fast forward to this year and I was again dx with BC, this time a new primary other breast! I had a clear mamogramme 6 months before dx! I was found to have extensive DCIS, invasive grade2, & Ext Lymphovascular invasion. I had a WLE that did not yeild clear margins and due to the extent of the DCIS and my history it was strongly reccommended that I have another MX, this was at the hosp where I now live I have remained ‘the patient’ of the prof in Edinburgh and as my local hospital could not offer me imm recon I am going back to ED for it, I have had chemo first ( disagreement between hospitals, local onc was annoyed that prof suggested it, having had WLE and SNB, which shpwed lymph node involvement ( 2 ops) Prof explained if another op done may take longer to heal and delay systemic therapy ( chemo etc) …made sense to me… I have stuck with bthe advice of the prof… local onc not happy for me to have imm recon either as he said Rads should come first recon after…Prof said if you do recon properly and RADS are done at a lowewr dose over a longer period there is nothing to worry about…now this man and his team have looked after me for the last 14 years and |I am still here…Prof also recons there is no reason why I should not be here in another 14 ( and more) I was 34 at 1st dx…young free and single, (I was told it unlikely I would have children, I went on to marry and at the grand old age of 39 had a beautiful baby boy, follwed 20 months later by a gorgeous girl) 48 now, Life can go on and good things will abound!!! I am having mx/imm recon, then RADS on the advise of my Prof and having read my history do you blame me???
Love to all
Jeanette xx