In the dark with breast cancer surgery and reconstruction

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Hi

I have ER8 PRO HER2 3+ I was diagnosed last November after finding a lump in September 23.

I met my breast cancer surgeon today to discuss surgery and plan going forward.

This is the first time I have spoken to any professional since the brief meetings during chemotherapy which to be honest have been a waste of time. The Oncologist did not seem to be able to answer any of my questions, didn't seem to be able to offer any support and basically just box ticked to say she'd seen me. This left me in complete darkness as to what was going to happen next and how all the pieces of the cancer puzzle fitted together.

As I mentioned in another post, the Breast cancer nurse was non existent and as we were all on different regimes, I did not see the same ladies having cancer treatment twice to ask any questions. 

The Surgeon told me today that a central wide excision (lumpectomy) followed by Radiotherapy was the decided course of action at the MDT. My nipple would more than likely be removed as the tumour runs under it. (I had suspected this but it was still a shock to hear it being said.)

The upshot is that my breast would be cut across the middle and I would have no nipple. 

When I asked about the tattoos given at radiotherapy time, (that had been bugging me) and whether there was some other means of marking to show the zappers where to zap, I was told a flat no - that the permanent marks had to be done for radiotherapy to happen.

Blue dye would be injected before surgery so that she could see where to operate. Is that not the point of the titanium marker being inserted at biopsy time, can anyone help here?  

I asked about reconstruction after the lumpectomy. She said there would be none and that the hole left from tumour removal would be filled by the body over time. The skin that was cut to get the tumour out, would be pulled together and stitched. 

Due to removal of the tumour - now 17mm with a 5 mm safe margin to be taken, the breast would be a cup size less than my other non-affected breast.

The removed nipple would not be reconstructed but I could have a tattoo done by a medical tattooist at some point in the future if I wanted.

I had been led to believe at the start of this process, that anything removed would be reconstructed - now I find that is not the case.

So now if I go ahead, I will have my left breast with a central scar and no nipple and  my right breast markedly bigger. There will be no symmetry.

She said that if I wanted reconstruction and for both breasts to look similar-  she would have to refer me to one of 2 other surgeons. Both are  male (due to personal trauma I do not want to have male medics touching me) and this referral would cause a delay.

I am hugely disappointed. I don't know what to do,  I had my last chemo over 7 weeks ago so I have been waiting some time for this next step. She wants to meet me again next week to see what I have decided so no dates have been booked.

I feel I am going out of my head with worry. Having been told that this female surgeon at another hospital would be great for treating me, I am now no further forward and the cancer is still in my body. All I have had so far has been chemo (December 23 until May 24) and a few sessions of Phesgo. I have a pulling sensation in my affected breast but she has said this is not due to the tumour.

Any ideas/thoughts from anyone? 

Has anyone else been in the same situation?

  • Sorry you are in the position of losing your nipple and also for your previous experiences of trauma. The only question I can help with is the blue dye. They will put it close to the tumour, and the drainage pattern will show them the most at risk lymph nodes to remove and check. Don’t be worried by the blue stain on your skin afterwards, it takes a while but does eventually disappear. 

    I also wanted to avoid the radiotherapy planning marks as I have a bit of a phobia about tattoos. In the end I accepted them, they are tiny and I try to think of them as freckles. In the grand scheme of the horrors inflicted on me, they ended up a lot lower down the list than I expected. 

  • Thank you Coddfish. It's strange how some things bug us for instance she talked a lot about removal of sentinel nodes etc but that hasn't worried me. 

    What a strange day it's been. 

  • Regarding the titanium marker I too thought the same. But the marker is used so the tumour can be found on U/S and mamo. So it came as a surprise that I'd need a marker clip before surgery. This was done 6 days before my lumpectomy, not sure when.its normally done but my surgery was a cancellation.

    I knew about having the blue dye. But on the morning of surgery I had another surprise it was a radioisotope that would be injected, it took seconds and didn't hurt, this is to locate your sentinal nodes. If during surgery they can't locate the nodes you have the blue dye injected, the blue dye I had must have been a very small amount as I haven't had any bluenes.

    X

  • Hello

    I can't give you any personal advice as I have only just started on my treatment and havent had surgery because I'm having chemo first.

    I just wanted to say that on Saturday I rang the Macmillan helpline because I, like you, feel that I'm not getting all the info I need and not being advised about my choices. The Macmillan nurse was amazing and gave me lots of helpful advice on how to approach my treatment team and who to contact about my lack of sleep since my first chemo etc.

    If you give them a call I'm sure they will do the same for you.

    Good luck.

    Big hug 

  • Hello Blueskythinking,  As I read your post I am hoping and praying for things to get settled and go your way.  I had a lumpectomy and my DCIS was also in the center and underneath the nipple but it was deeper so I kept my nipple.  My breasts are small too so not a lot of room.  I live in Florida so was able to have the temporary markings for radiation.  I didn’t want permanent ones as needed radiation to both breasts as had stage 1 in the left side.  If it had been one side I think I would have consented but I needed 7.  It felt like a little win after all the things we need to consent to.  
    I don’t know how you can get to the female surgeon you want but there must be someone who can help.  Have you tried calling the female surgeon that you would like to treat you and see if they can help you.  The last thing you need is more trauma and stress.  An oncoplastic breast surgeon would be helpful.  Take care and wish I could be more helpful but not used to the NHS as don’t have that here in US.  Hugs to you 

    Barbara 

  • Thanks Redc 

    The marker clip before surgery has not been mentioned yet but maybe it will - so 2 marker clips then. Didn't know that would happen.

    Thanks for the clarification about the dye - that makes more sense to me.

    Roll on next week for the next instalment.

    x

  • Thanks. I will give Macmillan a ring - that's a good idea. Although I am part of this online community, I hadn't thought of ringing them! 

    Good luck with the chemo. It affects everyone differently but I got through it ok and I am a wuss so keep going. I did 8 cycles and cannot believe now looking back that I completed it.

    Look after yourself and be kind to yourself. x

  • Thank you so much for your kind words. Yesterday felt like a rubbish day,

    The surgeon told me that my expectations of what she could do were too high although all I asked about regarding reconstruction was stuff I had read on valid cancer sites. Seems the stuff I was led to believe by my hospital at the start of this sorry journey was pie in the sky stuff.

    I have spotted a female surgeon who does private work (my husband gets private health insurance through his job which I have only just discovered - doh!) so maybe I will go that route. My only issue is any more time delays this might bring as I am already 7 weeks post last session of chemo and I want the tumour gone. As I am booked to meet the surgeon again next week maybe I will meet her and see what date she gives for surgery and then probably go private for any symmetry work needed once I have healed.  

    Hope you are ok and your journey is going well.

    x

  • Nice you have option to go private and you may be surprised if you call her you may get appointment sooner than later.  There are so many decisions and we always feel rushed too.  I understand with Her2 positive you want sooner than later and I am hoping that things go your way.  Hugs to you.

    Barbara 

  • Hi. I’m sorry to hear you are going through a difficult time. I thought I’d reply as I can share a few things from my own personal experience that might help. I had a WLE a couple of months ago and reconstruction options if you have to have your nipple removed are most definitely available. Moreover, surgeons can do an incision around the nipple so a cut across the breast isn’t always necessary. I think you should get a second opinion on your options for surgery if you are not happy with what is being offered . Secondly, you mention that you aren’t keen on the permanent tattoos for radiotherapy. My hospital offered an alternative to women who didn’t want them for either cultural or other reasons. I was given the option of crosses placed on me with a permanent marker pen- very glamorous! . These marks were then covered with a see through waterproof dressing. I had to be careful not to wash them off when showering. They survived 4 weeks perfectly well. It’s worth pushing on this point if you would like to avoid the tattoos as there is an alternative way to do it. Finally, as someone else has explained the blue dye is only used if the radio isotope injection doesn’t work. That happened to me and the blue dye was used. It’s nothing to worry about. If you get any skin staining it does fade over time. Good luck with your treatment and never be afraid to advocate for what you want.