Making a decision on treatment options

[Katz2407]

Hi Ladies,

i find myself here again after a turbulent 2 months where I have been in and out of hospital. The planned mastectomy and reconstruction went ok until 5 days after and I bent to pick up my laptop from my bed which was a bad move as I managed to tear my pectoral muscle on the left side resulting in a big bleed filling my drain, nearly passing out but calling an ambulance and my Husband then getting lifted out of my fourth floor window by a bunch of Dutch firemen and blue lighted to hospital. That meant my drains were in for 15 days. 

I happily reached 5 weeks this week with my scabs coming off, I checked in with the docs on the healing process as I was concerned that the right side was looking weird and not closing properly. When I had a shower yesterday some more scab fell off leaving basically an open wound. Since it was quite a small area I called for Instructions as the Dutch docs say “water and air” religiously for healing. Next thing I know i’m back at the hospital for assessment and they pulled the rest of the scab off saying “we’ll try and close it again, it will probably be fine” they mentioned worst case they would have to remove the implant and put a tissue expander in to stretch the skin enough to close properly but “ it will probably be fine” . Within an hour i’m back in surgery and the last thing I said “I don’t want a tissue expander”. Guess what I woke up with!! 2 days before the end of my 6 weeks healing i’ve now got an improving left side and an almost completely flat right side and an additional 3 months added on to the end of what I am now calling my sentence when yesterday morning everything was going fine. So, i’m Having a bad day today. I dragged myself through from diagnosis to here- 8 months and now i’m struggling about how to get back on the horse for the next bit which will take my tally up to a year. After being adamant about what treatment I wanted in the end I have now found myself going through every surgical option! I remain grateful that this is all still in a preventative situation but wanted to share about complications as I don’t feel they make you aware enough. It’s super hard for a control freak like me not to be able to fix this for now, if anyone has similar experiences i’d Love to hear from you and how you dealt with the frustration. Thankyou 

[delly]

Hi Katz

Good for you girl.Your positivity from your first to last post is quite atounding.

I opted for a mast over lumpectomy and rads, because the night before the op, I pinched in a 7cm sphere of flesh and it wouldn't have left me with much. I had to have mast on the other side a year later (non genetic), but am since part way through recon. 

Have you decided what type of recon to have? Yet another decision!! I opted for "implant" as it doesn't involve extra scars and the extra infection risks of self tissue recon, and the results with the tear drop silicones are a lot more natural than the old silicones. Has it's downsides, not warm natural flesh and may need replacing within 15-20 yrs.

Good luck with it all, hope it goes well.

Keep us in touch with where you're up to.

Lotsa love, Delly xxxx

[Katz2407]

Hi Ladies,
Thanks so much for replying, I didn’t expect so much of a response. It shows that when you become affected there are so many people out there with stories to tell.
I’m writing this in the bath in a hotel in Istanbul on the quickest work trip ever with another planned to Hong Kong in a couple of weeks. It’s been a busy few weeks and I’m thankful that there are so many people who have invested time and effort in learning how to fix people up and put them back together again and into sharing their stories.
The appointments were hard but as nice everyone was they finally talked figures in a really pragmatic way and I came to the conclusion I can’t argue with a risk rating of 85% and an increase of 1-2% every year as I get older. That means I’m almost certain that something else will rear it’s ugly head and I might not be so lucky if it happened again. Even the psych appointment against all my previous thoughts helped to sort things out for me. It seems I’m a control freak and the thing that was freaking me out is the short term- the op, the recovery, the after effects and not being in control of my own body. But I’m not in control now really, the genes are and if I don’t fix it now then there won’t be anything left for me to control later.
So, the strange sick feeling that was residing in my stomach has given way to the start of a plan and me telling myself it really is my choice albeit between 3 really **bleep**ty things. On my terms it’s looking like it will be the preventative double mastectomy with immediate reconstruction. I’m working on taking every bit of positivity out of this situation including shopping for new bras that might actually fit, a size reduction (believe it or not) and being able to wear some more revealing clothes!! Also I’m training again, I figure if I’ve gotta do this I need to go into it strong.
I’m surprised how I feel now in comparison, I might lose it again nearer the time who knows but either way I have to keep going and get to the other side. I’m aiming to be in a bikini on a beach somewhere ASAP !

[pastasmissus]

I was a 38C and had a mastectomy. It's actually fine and you don't look particularly lopsided in clothes afterwards. I went for a mastectomy because I didn't want to have to go bck for further surgery if the margins weren't clear; also my aunt has had breast cancer 4 times, so I just wanted as much breast tissue as possible removed!

They since found cancer in the other breast, so had another mastectomy and although I have prosthetic boobs I don;t wear them. If you go for no reconstruction there;s a group called flat friends who are very friendly and helpful.

All the best

[Liz Stacey]

Feeling incredibly stupid and not myself. Just joined and posted before getting my act together. Thinking about my bones and having read soo much stuff I confussed BC with a bone issue. 

Apologies.

Reality will sink in and I am sure BC will be stamped in my brain in future.

Anyone else been diagnosed and has bone issues ie osteoporosis I would be pleased to hear from you. 

Apologies again.

Liz

[Liz Stacey]

Hello can someone tell me what BC stands for.

I have just been diagnosed and am in a simillar situation. Choosing between maesectomy only or wide local excision with radiotherapy. I have osteoporosis and am concerned about radio therapy but terrified by the thought of looking at myself after a maesectomy. I go back to the hospital next Monday to agree a way forward and am not naturally a good decision maker I am very scared. I do not want reconstruction but am self conscious and appearance conscious. I do not have a large bust 34 b . The osteoporosis scares me too. I have been told if I opt for maesectomy I shouldnt need any other treatment. I know many drugs have a detrimenatal l impact  on bone density.

Liz 

[interestingtimes]

HI there, 

I love your approach. I have only just been diagnosed and am scheduled to have an MRI next week to discover the extent of the cancer. A mastectomy has already been mentioned. As I have lumps in both breasts, it is something I am seriously considering. Like someone else said, I don't want to have to go through all the tests and stress again. 

Thanks again for the positive slant. 

[Cola1]

Hi I have just been diagnosed and have been told I need a masectomy and hopefully no radio or chemo therapy. I guess it depends where you are in life. I'm 48 and in a fantastic relationship with a wonderful man I was initially devastated when they told me but I took some time to look at the actual procedure and I've decided it is more preferable. I've talked to the surgeon and discussed several options, turns out he can do both boobs at same time do a reduction (my boobs have always been a bit big)and give me neat smaller sized ones. I'm actually looking at it as a bit of a medicinal boob job. I know it's a bit extreme but have to put a positive slant on things. So my old droopy 48 year old boobs will have the cancer removed and have a make over at same time. I know it's scary but talk your options over. Good luck.

[Lucylou424]

I’m struggling also. I’m 34 was diagnosed last sept and have had 3 rounds of chemo made the decision today to not continue with the other three they wiped me out and have given me further problems I have to deal with however I’m still going ahead with the herceptin as I tested positive for her2. I have to have breast surgery which is now being pushed forward because of my decision to stop chemo however I’m not sure if they will offer me a lumpectomy or a mastectomy I’m ok with either of I’m honest just want to bloody thing gone!! If I’m honest I’d prefer to have mastectomy as the chance of recurrence is low xx

[daisydi]

I have just decided to go for another reexcision as one margin from my original surgery was not clear enough.  I was told that the guidelines state I should go for a mx but I am not ready for that.  I have to have surgery anyway for an axillary clearance so I want to give it one more try.  Maybe not the choice other people would make but it is the right choice for me at the moment.  If I have to eventually have a mx then I know I did everything possible to avoid it.  Its a difficult decision and not one that I wanted to make but my third surgery is booked for 10th Jan and I am hoping and praying that I have made the right choice.  Good luck with whatever you decide.

[pastasmissus]

I was offered a wide local excision with radiotherapy or a mastectomy. I went straight for the mastectomy without reconstruction. My aunt has had breast cancer 4 times, and although they haven't found a genetic cause, it does seem likely as there's also a great aunt who had ovarian. It's actually a good job I went for the mastectomy, because it was bigger than they had expected.

I couldn't face the thought of further operations if excision was incomplete. Also just having the rest of the breast there waiting...

I went for no reconstruction because I'm not particularly attached to my boobs, they are quite small, and I didn't want a looong operation. Also didn't want anything foreign in there which might make it harder to detect a recurrence.

A mastectomy is not that big an op without reconstruction - mine was a daycase! The op takes around 2 hours.

Tuns out I need chemo and radio anyway due to lymph node involvement.

Good luck whatever you decide!

Oh, and if you go for mastectomy without reconstruction, look into a group called flat friends, very helpful.

[Nikki49]

Hi Katz,
Firstly sorry you’ve found yourself here.
In my case I wasn’t given a choice, I was told I needed a mastectomy.
In a way I’m glad I wasn’t given a choice must be a horrible position for you to be in x

Knowing what I know now (Having gone through chemo) if I had your genetic risk, without hesitation I’d opt for the mastectomy every time.

I had a skin sparing mx with an implant, in a bikini you wouldn’t know I’d had surgery let alone a mastectomy.
If the cancer had progressed they might not have been able to save the skin so I’d have to have a full reconstruction with the additional scaring.
Basically what I’m saying is you’d probably get a better looking result doing it now when you have a choice.

Also when my path results came back they found 10cm dcis which they didn’t know was there beforehand!
The surgeon said we call it ‘the silent killer, so having the mx was the right thing to do’.

An mx is major surgery, so you do have that to think about but I guess they wouldn’t offer it if they didn’t think you could cope with it or benefit from it.

Best of luck with whatever you choose xx

[Katz2407]

I am struggling with how to decide between radiotherapy and a mastectomy at the moment with time pressure following lumpectomy. I have generic issues that make my risk of BC really high and am being offered a preventative mastectomy as a alternative to radiotherapy. I have conversations coming with plasic surgery and also radiologist to discuss potential outcomes but I was wondering if others had the same issue- choosing between 2 full on treatments which are both “preventative” but with different effects on the future. There’s always the ‘chance’ that this was my one time and nothing else will happen so i’m concerned a mastectomy is a huge step which I could take later if I need to. Love to hear any thoughts or experiences. Thankyou.