Is reconstruction right for me -

catey

I am very new to all of this and the site. I had a diagnosis in May. Surgery within 3 weeks and then straight into chemo in June. I was told by my surgeon because my margin surgery was still not 100% that following chemo, there would be a mastectomy of my right breast. And that included a reconstruction and reduction of left breast. Well, it's moved so fast that now I've finished chemo 3 weeks ago and met the surgeon and plastic surgeon but 2 weeks out I don't know that I can face a reconstruction. I'm older, not super fit, exhausted by chemo and just not sure I can cope with reconstruction surgery. I haven't concentrated on this during chemo as I couldn't do the thinking - I know I should have. I just accepted it because that's what I was told was happening. I'm really not certain I could cope with a reconstruction.  I'm struggling but thinking at this stage I'll opt for a mastectomy but really concerned of having a large remaining heavy breast on my left side. Actually, I really don't know what to do.

iserbrown

Here's a link to a site that, if you haven't seen it already, will give you indepth information 
https://www.reclaimyourcurves.org.au/

Take care 

catey

thanks -it's hard making the decision so appreciate all feedback and resources.  Surgery for a reconstruction seems very daunting but it's the recovery that worries me the most. But I'm not sure opting out of reconstruction is the best option just because I'm nervous about recovery.  I don't want to minimise other people's experience though - 

Afraser

Dear @Catedwyer

My surgeon preferred to wait a full 12 months after surgery to do any reconstruction (he was very positive about a good outcome though). That took away any pressure at a difficult time. I decided not to have any at all and have never regretted that decision (8 years on). But I can’t overestimate how personal that decision is - there are no wrongs or rights. I too am large breasted - I wear a prosthesis, find it easy and am comfortable about how my body looks. Doing something you are uncertain about is always uncomfortable - your surgeons should be able to provide options for reconstruction now and later, so that you can defer if you feel that’s the best option for you. Best wishes. 

catey

My surgeons feel it can be done now - and of course, I could wait or in fact not go ahead. I don't feel I'm being pressured. I do feel supported.  But I'm full of indecision and I suppose a lot of fear.  And my fear does centre on recovery. But the fear if I choose not to have reconstruction how I would cope with the dealing with that decision. It is ultimately my decision but the unknown and all the uncertainties make it complicated.  It's good to hear other perspective and get those insights.

iserbrown

There's also a private group here that you may benefit from joining 

https://onlinenetwork.bcna.org.au/group/1-choosing-breast-reconstruction

Caz1

Hi @Catedwyer, my advice is wait wait wait! I had my recon cancelled,( it was supposed to be at the same time as my mastectomy in April) due to covid earlier this year, turns out it was a blessing. 
Ive had time to think about what I want, and I’m seriously considering going flat. Looking back , everything was rushed. Not having recon wasn’t really given as an option, which I believe is problematic

Take your time, do lots of research.
Caz xx

Caz1

 This was a recent discussion you may be interested in.

https://onlinenetwork.bcna.org.au/discussion/22818/to-remove-or-not-to-remove-that-is-the-question#latest

catey

thank you  - I need to have the mastectomy and I understand the idea of waiting but I feel that sense of urgency. There's so much to consider. Funny, now I'm moving towards recon - terrified of recovery but my size makes me fear managing imbalance. Golly it's hard thinking and  I really appreciate all the generous sharing. 

Zoffiel

There are so many options. One off, both off. Recon, no recon. 
If I had my time again, I'd still have removed both my traitorous boobs, but I would not have gone down the cosmetic track.
 I was 43 at the time and having lived most of my life with spectacular knockers, I just couldn't visualise myself flat chested. I should have given that concept more thought.
 I also hadn't considered the ramifications of the reconstructive surgery--it simply never occurred to me that I could have any long term complications because the majority of people don't.
You can't live your life being terrified of what has happened to other people, but I think it is very wise to consider your own priorities. What is more important to you?
The bigger the breasts, the more likely you are going to have surgery on both to even the whole show out if you do reconstruct. Are you OK with that?
Living in regional areas does make those decisions more difficult because of the constant toing and froing concerned. If you live in the city, waiting to see how you feel a bit further down the track is not as complicated as it is if you are trying to get everything over and done with in one hit. Mxx

Mazbeth

Hi @Catedwyer I agree with everything that has been mentioned. I really recommend the support resources that have been suggested - I used them to just get a bit of clarity about what I wanted. I had ILC in the left breast and made the decision to have a bilateral mastectomy (BMX) which I had after neoadjuvant chemo. (BMX in June.)
Everything does move so quickly, my head was spinning. I also talked it through with a psychologist to unscramble everything. As has already been said, it is such a personal decision. I knew from the start I wanted a BMX and reconstruction as I did not feel that I could handle the stress of monitoring my extremely dense breast tissue coupled with the fact my breast size was a DD/E cup. My surgeon supported my decision based on density and the type of BC. 
I commenced the reconstruction process immediately - expanders which will be exchanged for implants in December. Both my surgeon and plastic surgeon worked together in the surgery and it took about 3.5 hours.
I am 54 and I have recovered well. The expanders are ‘tight and firm’ and I have had 4 fills - 1/month. The actual fills have not caused me any pain.The treatment and the surgery including the final exchange will take me to almost a year since my diagnosis. I also recommend reading up on the recon process - I joined the private group here and I learnt so much. As you already know, the girls here are brilliant and are so generous with their advice. I couldn’t have the DIEP option because 
My medical crew have been amazing. My plastic surgeon said something that stuck which was that I got to decide from now on what I wanted, unlike during the treatment where I was doing everything I was told and I knew I had to do to get through all of it. Take your time. Once you have done the treatment, you do have time to think and you have choices. I am happy to offer any support I can. I am also wishing you all the very best in whatever decision you make. M x

catey

oh thank you - my surgery is booked. I feel I have been supported but I didn't think through chemo and recon is booked with the surgery. It's soon. I wish I'd jumped onto the online forum earlier - but I was struggling in chemo and didn't have space for much. Chemo only finished a month ago. 

Deanne

It is a very overwhelming time and it can feel as though everything is just happening to you without any choice. After all, none of us chose to have breast cancer and we all just want it gone and never to go through this again. We follow the recommendations of the expert doctors when it comes to treatment because they know more about treating cancer.  

But, it is so important to feel that surgery options are fully explained and that you have time and enough information to make the choice that is right for you. As others here have said, there are so many options. The thing that makes the most difference to how you feel in years to come is that you understood your choices and felt in control of making your own decision. 

My surgery and treatment path was different to yours. I had a left mastectomy then chemo and radiation. I felt exhausted at the end and so made the decision at that time to not have anymore surgery. I lived quite comfortably for 7 years with one breast before deciding, for a variety of reasons, to have my other breast removed. Very happy with that result now too.

Just make sure that you are comfortable with any decision you make. It’s ok to just take things one step at a time. We all just want to move on from cancer but this is a decision you need to feel you are in control of. Wishing you all the best, no matter what you decide. Take care. It’s ok to slow things down if you need more time.

Ecup2020

Hi there,
it is indeed a very personal decision.I had a mastectomy of my left breast as the lobular cancer was so large .I had a reduction in the right breast ( was an E cup now a C cup) and I am really pleased with it.I opted for a two stage reconstruction of the left breast with the tissue expander inserted during the mastectomy and after radiation I will have that removed and the operation for the diep surgery ( from my abdomen).
As with all surgery it will not be without pain and discomfort and the recovery is not a walk in the park.But people I have talked to in person or online about it think it was worth it in the end.And I think it’s a bit like childbirth, as time passes the memory of the pain lessens .And they have plenty of good pain meds.
As an E cup I couldn’t contemplate going flat on one side as it would have been so weird but I understand that many people are ok with going flat,
which brings me back to the first point about it being a personal decision.
the other resources suggested in the above posts are well worth a look.
best wishes for the operation and recovery.