surgery options after chemo but whilst on herceptin. very confused!!!

[Butterfly318]

Hello there Helenstevo.

Yes i am doing very well thanks.  June 5 2013 i had the Mastectomy. Therapeutic Mastoplexy was April, second surgery to attempt clear margins was May then Mastectomy 5 June 2013.   I had the surgery Friday AM and stayed in hospital until Monday.  It was my third surgery in 7 weeks and the surgeon was concerned about clots, infection and recovery but i had one drain in place until Wedneday of that week.  At all times the District Nurses have done home visits to remover stiches, drains etc.

In the 24hrs following surgery i had Codeine Phosphate 30mg but to be fair after that i started doing the exercises and keeping mobile.  Pain was minimal (unless i caught my drain on the kitchen cupbaord) and i just took Paracetamol for a few days and occasionally at night in the couple of weeks after.

Because the Surgeon didn't think i was going to have Radiotherapy she put a tissue expander (we had discussed at length) in place but due to timing the expander had to be filled really quickly.  This meant filling with saline through a port which sits on my ribcage.  It felt a hugh pressure to my right side (m/x side) when she was filling with Saline. (a bit like somebody sitting on my chest). She did the fills every week for 4 weeks.  Sadly the expander has been slightly affected by the Radiotherapy but the skin is good (massage every couple of days ensures good blood supply which has helped the healing process).  Just waiting for a date to have right side expander swopped for permanent Silicone and left side Mastoplexy to match up.  (basically lift and reduction).  

Because the skin can only be expanded so much following mastectomy i should end up with pert c cups, i did start out with e/f cups.  I shall be grateful for a matching pair of healthy breasts. In terms of screening, every appointment the implant side is visibly checked and physically examined around breast area, neck and spinal areas and i have just had Mammogram to left side (awaiting results) before she goes ahead with surgery.  It will be two years in October since my original diagnosis.

Hope this is helpful, please feel free to ask anything at all.   Gilly x                                                                                                                                                                                                                                                                      

[helenstevo]

Thank you so much for your information gilly. I hope your doing well. Can I ask how much pain you were in after surgery & what happens at the infills & how painful is it please? I decided on lumpectomy & pulling some fat from under my arm to slightly fill the warned about big indentation & after a yr (after rads) lipo from tummy put in breast (which could take a few goes ive been told as your body reabsorbs fat)! But im thinking I may have made the wrong decision. Im noticing my lump grow I think whilst im awaiting surgery (28th) & it was 2.5cm in a cup breast is already pushing it for a lumpectomy! Also peace of mind after with regards to recurrence. Also & I know this sounds bad & vain but I hate my small bust especially as im a sz 14 so out of proportion but think ill end up with bigger breasts in the end as told other good side will require an implant in 12mths to match up. Saying that id prefer a double mastectomy but I think itll be a no! At least things would match up better & also I wont drive myself crazy with worry with checking as much!! What screening is offered if you have implants? Im just so scared of the pain from this surgery compared to a lumpectomy xx

[Butterfly318]

Dear Helenstevo

Really sorry you are having to make such a difficult choice, it feels like you're not getting much advice / support from the care team. You can't possibly be expected to give a decision next week.  I was diagnosed in October 2012 with 6.5 cm IDC 1 node involved and had Neo Adjuvant Chemo with what is now described as 'minimal response to Chemo' Pathology after surgery indicated multifocal and 4.2cm so quite unclear what the Chemo did or did not do!!!! 

I initally saw an Oncoplastic Surgeon who then linked in with an Oncologist (part of the same MDT) but i do know all teams / units are different.  It is a shame that you weren't offered an appointment with the surgeon at Diagnosis, sounds like he is a bit peeved.

Like Sam has suggested a chat to the helpline staff may be useful and yes recovery following Chemo may be compromised,  recovery whilst on Herceptin may also be compromised but lots of people have Neo adjuvant Chemo followed by surgery and make excellent recoveries.  I Had 6 Fec T followed by three lots of surgery 1 Mastoplexy wth tumour removel (gorgeous pert c/d cup orginally g) 2 WLE (due to unclear Margins) followed by Mastectomy, then one month of Radiotherapy. When the surgeon couldn't get clear margins we discussed Mastectomy and tissue expander to be exchanged for permanent silicone at a later date.

I had a similar thing with not everybody singing from the same somgsheet,  At the time of my Mastectomy my Consultant put in the tissue expander and was cross with the Oncologist as she had planned that surgery based on her believing i did not need Radiotherapy.  In 450 grams of tissue there was one 2mm area of concern with clear margins. The Oncologist said that the original Tumour was large and he strongly recommended i had Radiotherapy.  I am sure that neither of them realised how upsetting and how difficult it made my decision that they couldn't / didn't agree. 

For me the things to be considered was Radiotherapy on tissue that had undergone cutting three times, a strong possiblility of the skin breaking down, and Radiotherapy could damage the implant / change it's shape. I did have the opportunity to discuss these at length with my Breast Care Nurse but the surgery had been done, expander in place and i had to make the decision.  The expander was filled very quickly ..... Ouch.......and i then had Radiotherapy,  The expander has changed slightly  and the skin has tightened slightly.  I did have to be patient with the recovery but am approaching 12 months since the expander was put in and i am due to have it exchanged for a permanent silicone on the Mastectomy side wiith a Mastoplexy to Left side.   So...... whilst it may be more difficult to have surgery given where you are in the treatment process not impossible at all....I took a probiotic from Health Shop and took advise on diet. Following Penny Brohn nutrition advice.  I have made an excellent recovery and am doing really well  Such a shame that nobody mentioned before now that it would be good if you could give up smoking.  Nurses and Docotrs taking about Death from infection feels not OK to me but i'm afraid there is a lot of clear evidence that smoking affects recovery time just not the best time to give up.

If you can't discuss it with the Nurses on BCC can you have a appontment with you're Breast Care Nurse  ???  Whatever you decide I wish you well. You'll get there.  Take Care Gillyxx.

[Sam_BCC]

Helenstevo

Whilst you wait for the other users to reply with experience and knowledge may I suggest you give the BCC helpline a call on 0808 800 6000.  Here you can talk through your concerns and options with a member of staff who will offer you a listening ear as well as emotional support and practical information.  Lines are open today until 2pm and Monday to friday 9 to 5pm

Best wishes Sam, Facilitator

[helenstevo]

Ok so long day in hospital. Picc line out. Went fine. Met plastic surgeon. Hes not v happy that ive been the neoadjuvant way ie chemo first to shrink lump. He said if originally id seen him & he thought it wasn't possible to have a lumpectomy then it would have been mastectomy. Reason being is, theres every chance the lump wouldn't shrink enough with chemo (mines not worked hardly at all) & as im her2+ I need herceptin. So now ive had chemo & im on herceptin ( which he says is very similar to chemo as it kills bad and healthy cells and the immune system) its left me in a position of restricting what surgery I can have & high risk surgery as ill recover slower & if I get an infection my body will not be able to fight it and i'll be in serious sh*t. So despite this he has offered me the following:

1. lumpectomy but a lot of tissue has to be removed. He said he will take some fat from under my arm to try re fill my boob but has warned there will be a large indentation at least. He said a year after radiotherapy maybe have liposuction fat from belly injected into boob to fill it out but this isn't always a permanent procedure as your body reabsorbs the fat quite often. You normally need this doing at least twice & yiu feel battered & bruised after surgery. There is also the possibility of the margins not being clear therefore needing a mastectomy anyway. If they are clear radiotherapy is a definite.

2. mastectomy but save my own skin with an immediate implant put in. Which is more invasive surgery so longer recovery time & pain. He said my boobs would be out of line. He said there is a high chance i will still need radiotherapy which could possibly ruin the implant. He kept mentioning the fact that if i had an infection it would be immediate surgery to remove the implant and i will struggle to fight a bad infection due to my herceptin i have, also been told how to quit smoking a s a p. Plus ill have 2 drains fitted!
After 12 months he said he would tweak the implant or replace if required, create a nipple and with a possibility of putting a smaller implant in my other side to align both boobs up.
(So im assuming ill get a bigger bust out of this eventually)??? Bye bye A/B cup?!!

1-2% chance of a recurrence with mastectomy & 4% with lumpectomy.

I know number 2 mastectomy recon option sounds better but im so frightened of pain after surgery & petrified if I got an infection nurse even said it can result in death!! I asked if infections are high possibility & she said most people are fine but it does happen & with my herceptin issue its worse.

I have got to make a decision by monday. Surgery is booked for 28 april either way. Help. Heads a mess!!!!!