Hi all, I'm about to finish chemo after 6 months of treatment so next up is surgery and radiotherapy. I'm having a double mastectomy without a reconstruction as I don't have enough body fat to make it worth having a flap reconstruction. It's going to be tough getting used to this but at least I don't have to have major surgery! I'm meeting with my surgeon later this week to work out the timing of everything but was wondering if anyone had any tips or issues/options/questions to bring up with my surgeon or breast care nurse?

Hi Laura, I'm having my last chemo tomorrow, so am on a similar track. I had a mastectomy in February, but not a double or like yours. I hope that your surgery goes well for you, and your follow up radiation also goes well. I start radiation in August. We all have different order of treatments, and I find the network is really good support. Take care, Tracey B ????

Hi Laura! I had a double mastectomy and decided not to have a reconstruction. Prior to surgery, I asked a friend to use hypnotherapy to plant some positive thoughts within me, about the fact that I was still the same person. I also wrote a eulogy for my boobs. Just another way to prepare for the change. i had to change my wardrobe too. My tops are the smaller size and I usually go for some design, or embroidery on the front. I found mindfulness and walking post op helped immensely. If I missed a day, that would be my tears day. Hope this helps.

Hi Lauramaria, Welcome to the network. I'm in the middle of chemo (AC) post mastectomy (late May). My mastectomy (right only) surgery was the 3rd in the space of 5 weeks as I'd tried to have breast conserving surgery, but the tumour was bigger and more irregular than expected with cells in margins. I didn't have much more for the surgeon to take after the earlier surgeries and remember saying goodbye to my boob pre-op, just wanting to get rid of the cancer. I wasn't able to have immediate reconstruction as I was so inflamed from earlier surgeries and just wanted to focus on the cancer. Radiotherapy was also undecided at the time. Before the surgery, I tried to keep active with walks, (I used to run regularly, but that soon stopped!!) Take someone with you in the consult, with questions written down in case you forget them. While in hospital, you'll be given instructions on physio for your arms. As you're having bilateral, you'll most probably have a drain in (under your arms). The drains usually stay in about 10 days and I was shown how to care for the drains before I left the hospital. The nurses also had a little cross shoulder carry bag used to carry the drains so they're not too obvious. The wound was a neat line with pads and held together by a velcro corset binder (felt a bit like scarlet ohara). My nurses organised the 'my care kit' from bcna which gets sent to your house. It contains a berlie, temporary prosthesis and a pilates dvd for post-op breast surgery. I've found the dvd to be fantastic. It's highly structured, according to weeks post surgery, and I'm now doing the 6-10 program. My surgeon also recommended a company/shop for a breast prosthesis and new bras. I waited til I was 6 weeks post op and went with a few friends to make it a special day. After chemo, I'm also having radiotherapy later, probably around Oct. Moogoo is fantastic for your skin for that, I've heard. All the best for the surgery. Keep in contact, Karen xx

Hi Laura, like you I had 6 months of chemo, followed by a double mastectomy with no reconstruction. I am currently having daily radiotherapy and herceptin every 3 weeks. It's been 6 weeks since I said goodbye to my little boobies. For me I am just relieved the cancer is gone. Like Michelle I have adjusted my wardrobe, choosing loose fitting or tops with a bit of gathering around the bust area, printed fabrics and steering clear of plain fabrics. I haven't bought new clothes for myself in ages, so I am enjoying my new outfits. My surgery went well, double mastectomy and lymph nodes removed under both arms. I had four drains. I was in hospital for five days and was luck enough to have the drains removed before leaving hospital. The drain bags are fabulous. I crossed them over my shoulders, it made walking around so much easier. I am in my third week of radiotherapy and my skin is holding up well. I am using Moo Goo udder cream on my skin, so far so good. Exercise is very important to help combat fatigue which you may suffer from as a result of radiotherapy. Wishing you all the best for the next stage of your treatment. Lorraine

Hi Laura, it can be a scary and uncertain time and sometimes our bodies dictate what our path will be. You sound like you might like reconstruction though, did you have a conversation about other reconstruction options? I was in a similar situation as in bilateral mastectomy after treatment finished, but while I did have a tissue reconstruction, there were implant options if I wanted to go that way. Even with having radiation there are options for most ladies. Louie

Surgery & radiotherapy tips | BCNA Online Network

Anonymous
10 years ago
Hi Lynchen, Moo Goo has a website. You can purchase on line, or put a search in for your local area one the website, and they'll give you info on suppliers in your location. They have different types, so the one to use is the udder cream. It costs about $18 for a big tube, it spreads well,so it'll last you a long time. Hope that helps, Tracey B ??
Lynchen
Member
10 years ago
Have been reading the comments about Moo Goo. where does one get it from. I am one of the lucky ones that don't have to have chemo. Paid the $4,500 and got a score of 15, but still have to have radiation.
LorraineB
Member
10 years ago
Hi Laura, I had my surgery a Friday afternoon before a long weekend, so because of the public holiday on the Monday I had to wait until Tuesday for the surgery team to back at work. I could have gone home Monday if it wasn't for the public holiday. I had very little pain, which surprised me. I only needed panadol and anti-inflamatories.

I don't think I will bother with prosthesis either. I had very small boobs to begin with so I am not missing much.

All the best for your surgery
Anonymous
10 years ago
Hi Laura, haven't started radiotherapy yet. Have an appointment with the radiation oncologist on Monday. One of the girls on the bcna suggested use of moo goo to look after your skin during treatment. They recommended the udder cream, so I've purchased a tube. Will let you know once I've started radiotherapy, Trace ??
LauraMaria
Member
10 years ago
Thanks :)

Now that you've started radiotherapy (I assume), how have you found it?
LauraMaria
Member
10 years ago
Thanks! I'll definitely be walking a lot - I get so bored not being out and about or at work!

I find I'm very optimistic about things and not too attached to my boobs so I don't think I'll be teary but it can never hurt to focus on other things!
LauraMaria
Member
10 years ago
Thanks for the tips - I've already been sent the Berlei kit so I'll be sure to check out the DVD and get some good cream for my skin. :)
LauraMaria
Member
10 years ago
Thanks for your tips - it sounds like we're on the exact same treatment! I'm not the girliest of girls so I think I'll be fine with my wardrobe - I think I'll be buying a lot of oversized shirts and tops with higher neck-lines! It will be nice not having to wear a bra at least! I don't think I'll even be bothered with prosthetics.

I was only expecting to be in hospital for 2 days at the most! Did you have complications? It would be nice for the drains to be removed before I went home. Though I'll have an RDNS nurse come to my house every day until they're out. How did you find the pain from your node clearance?
LauraMaria
Member
10 years ago
Hiya,

No I don't want a reconstruction - I can't have a tummy flap one as I don't have enough fat, and I can't have implants as I'm having radio. My only other options are groin/back flaps... I don't feel that it's worth messing with other parts of my body and having major surgery in order to create unpredictable, small breasts for the sake of some volume. The groin one would be easiest on my body but the RAH had only done 6 of these, with one not working out too well for the patient!
Alternatively, there's the 'lypo' type one to inject some fat into my chest but the long-term results of that are unknown and I'm not keen on being a guinea pig!

At the end of the day, I think I'd struggle more having gone through crazy surgery for the sake of unpredictable boobs, than I would having a relatively simple surgery with an obvious outcome.
LouiseTurner
Member
10 years ago
Hi Laura, it can be a scary and uncertain time and sometimes our bodies dictate what our path will be. You sound like you might like reconstruction though, did you have a conversation about other reconstruction options? I was in a similar situation as in bilateral mastectomy after treatment finished, but while I did have a tissue reconstruction, there were implant options if I wanted to go that way. Even with having radiation there are options for most ladies.

Louie