Hello
I have responded well to chemo regime and original tumour was 4.5cm with DCIS. Am ER+ and HER2- with lymph node involvement
My original plan was to have MX and reconstruction, RADS then Tamoxifen. I have received a call today from BCN saying that the MDT have had a meeting about me and are now wondering whether a WLE is another option?? I am confused as at the very outset I was told I would have to have MX because of DCIS.
Any thoughts/advice would be extremely welcomed!
Dani
XX
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Hi Dani
It’s bad enough having breast cancer let alone having to make these awful decisions…I think it is important that you know exactly what you are dealing with in order to make an informed choice. I was diagnosed with high grade DCIS in January and originally underwent a WLE along with a sentinel lymph node biopsy in the hope that my breast could be conserved. My nodes were clear but they found abnormal cells around the margin of the lump and advised that I have a mx. I didn’t need rads after my mx as no abnormal cells were found near the chest wall and I didn’t need Tamoxifen. Do you knw what type of DCIS you have because this could influence your decision?
I think perhaps you need to have a chat with your BCN and consultant and write down the questions you need to ask e.g.
What type of DCIS do I have?
If I have a WLE only +/- rads and Tamoxifen, how will this affect the chances of recurrence as opposed to going ahead with a mx, rads and tamoxifen?
I never had the option and in a way I’m glad the choice was taken away from me in the end because I often think about it now and really don’t know what I would have done.
Take care
Jane xx
I was told at the beginning of my treatment that I would need a MX because of the size of my tumour (4.5cm) and the fact that it was right in the middle, so removing it would effectly cut the front of my breast off.
I had chemo first to shrink (4xAC and 4xPaclitaxol). By the time I was on Taxol the tumour had shrunk so much that the surgeon said, no need to do MX can do WLE instead. By the time surgery came around they had put in a market as the tumour had disappeared almost, so the surgeon did a WLE and SNB. It was done through keyhole surgey, general aneastethic, overnight stay and home the next day. I then went on to have 20 sessions of rads.
As he got clear margins I have not needed any further surgery and the biggest scar I have now is on the other side where I had a portacath as I was HER2+ so had 12 months of Herceptin. As the scar follows the line of my nipple you can’t actually see it at all and you would NEVER know that I had had surgery for BC.
If they didn’t think it would work they wouldn’t suggest it. It also makes no difference to survival rates either providing you have any radiotherapy that they recommend. I was also told that if the worst happens and a recurrence further down the line in years to come it is less likely to recur in the chest wall than with a MX as there is still tissue in the breast.
It is good news for you. Your chemo has been a success.
Sam
I couldn’t offer an opinion about the 2 different ops, but just a little warning. I had double WLE and rads, and told I could have nip and tuck to even things up afterwards THEN was told NO surgery to irradiated breast tissue due to wound healing problems resulting from damaged blood supply … I’ve had to make a big (and polite) fuss to get my onc to agree to do it, so now having time to think it all through. It has been very hard to cope with false expectations - encouraged by the clinic - and to be told well actually it’s not going to happen.
So if you go for WLE and think you will need corrective surgery, ASK NOW AND WRITE DOWN WHAT THEY SAY. Surgery to non-rads side is OK and full recon after MX and rads is OK cos new tissue is used from another part of your body and that has a good blood supply which is necessary for good wound healing.
I know your first priority is to get rid of the cancer, but as you recover from the op and are trying to build up self esteem, you don’t want to be in the position that something which will help you has been ruled out already.
all the best
grumpy
I would also add that often the knee jerk reaaction is “have a MX, take it all away” but this isn’t always a better option, just a different option.
Ask your surgeon honestly which he thinks is right for you looking at the results. I told my surgeon I was quite happy to go down the MX route as I had prepared myself for it from the start, but he was confident a WLE was right for me and I have to say he has been.
The only thing was I was planning on having a reduction on the other side with a MX and reconstruction to overall be slightly smaller, but am still stuck with a 34F chest.
But you can’t have everything.
Sam
Hello Jane
thank so much for your response and a very informed one. My mind had been made at the very beginning and now a curve ball been thrown at me. I am not sure of grade of DCIS but I will have questions ready when I see surgeon this Thursday.
Feeling the side effects today as I had last chemo session on Friday so feeling fragile.
Thank you again Jane.
Dani
XX
Thank you all! I have to ask questions before any decision made and thank you again ladies as I am armed with info I need!
Dani
XX
HI,
Its funny how different surgeons approach things. As i have been told even though my tumpur has shrunk i still need a MX and not a WLE. Its shrunk from 5cm by 4 cm, to 11mm by 8mm half way through chemo with 3 Tax still to come.
I was also told as there was lymph node involement that this was my best option to prevent recurrence.
Its all very confusing, and after reading this i am even more confused 
A chat with my BCN coming up i think…
Rae
x
Rae,
I was told all along that it would be mX until I had my ultrasound last week where the tumour had shrunk from 4cm to less than 1cm… My concern is the DCIS and have questions to ask my surgeon when I see him Thursday. Nothinf seems to be set in stone and you may find your plan may change… Keep an open mind and have questions at the ready.
Dani
XX
Will do Dani - thanks. Let us know how you get on 
x
I will Rae.
Take care
Dani XX
Hello ladies
I am really lost for words.
I was ready with my list of questions about WLE v MX . It’s been a confusing time as right from the beginning of mydiagnosis I was told that because I had DCIS measuring 5cm and actual tumour only 3cm. Chemo only works on actual cancerous cells and doesn’t affect DCIS. The option of WLE should never have been brought up in the meeting my MDT had ion Tuesday and when BCN called me to say that this was anoption I said “what about the DCIS?”
I had my consultation with the consultant surgeon yesterday who I initiallly thought would be doing the MX but appears that would only happen if his list of surgery times coincides with my PS! He examined the breast with tumour and confirmed he coudn’t feel the lump at all then sat by the computer andt looked at my notes. He then went on to say that there’s no chance that a WLE could ever be given as an option only MX because of rhe DCIS! He said that in the meeting on Tuesday they overlooked this when they discussed my case. He sat in on that meeting.
Stunned isn’t the word that I felt yesterday as I was only prepared with questions regarding WLE… The MDT met again yesterday morning prior to my consultation as the BCN who is also a friend of mine voiced her concern to the PS regarding the fact I had DCIS and a WLE is not an option. The MDT realised their error and now am back to the original plan which is MX with Recon and follow up Rads. Apparently the Radiologiist that took the ultrasound had made the suggestion of WLE as the tumour shrank to 11mm but didn’t take into account that DCIS is not picked up on an ultrasound only a mammogram…
The BCN who sat in on the original meeting assured me that the error was picked up before it woukd’ve have gone further.
As my very last chemo treatment was 22nd my surgery will be in 3-4 weeks time so have asked to meet the actual person who will be performing MX. My confidence in the team has to be rebuilt as I do not want to at this stage get 2nd opinions and more importantly cannot afford the private route.
Thank you to all you ladies who have given advice and supported me so far.
Take care.
Dani XX