Planning for double mastectomy with reconstruction

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varapappas
varapappas Member Posts: 8
edited January 2016 in Surgery - Before, During, and After

I'm super new to everything! I was diagnosed on the 11th of this month.

I have other health issues, including, but not limited to Crohn's disease. After only a mammogram and ultrasound, md anderson was immediately talking to me about double mastectomy. At first this terrified me, but now that I've given it more thought, I think this is the best course for me. I do believe I need to avoid chemo and radiation to stay alive, so my current plan is to only do the double mas with reconstruction.

I am still going through testing. I had an mri yesterday. I have had preliminary biopsy results and only know that I am IDC grade 2. I'm finally meeting doctors tomorrow and will hopefully have more info to flush out my decision.

I'm TERRIFIED of surgery. My brother died at 32 from an infection he got from surgery, so I am aware of how deadly surgery is!!

I need stories from those that have done double mas with reconstruction! I plan to do it at one time to aid in my mental health. I am only 33 years old, and feel like I am *just* starting to live my life, and I want to stay alive!!

How is the recovery? For those that have trouble healing, what other things should I be aware of? How do you handle showers and day to day during recovery? How much bigger can you go? Cancer free with double mas alone? Please, let me know!! I need some hope, as well as awareness. Thanks!!

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  • Veronica31
    Veronica31 Member Posts: 97
    edited January 2016

    Hey Varapappas! Sorry you're joining us in these groups. I was 31 and planning a wedding (which is now indefinitely postponed) when I found out I had IDC, grade 2 also in October. I think the place where you are right now is the absolute scariest part. In the beginning, you don't feel like you know anything yet and that's what makes it scary. It WILL get better.

    I too was terrified of surgery. I never had it before, and since finding out about breast cancer, I've had 4 surgeries. I had a bilateral mastectomy with tissue expanders placed in November. To say that I was scared was an understatement. But they really take care of you when you undergo such a big procedure.

    It was painful when I woke up. The tissue expanders are very uncomfortable, and I remember thinking that the pain would never go away. However, by about five weeks out, I no longer even noticed them. I was back to sleeping on my sides by then too. While it is uncomfortable and painful at times, it DOES get better. I actually think the worst part was the drains. I could not wait to get them out, but they are very important.

    My fiance helped me wash my hair and shower, but he only had to help me for one day. I got my hair washed after leaving the hospital at a hairdresser, then the following day he helped me. I bought a lanyard and safety pinned my drains to that while I showered. I immediately started arm exercises and was able to raise my arms enough to wash my hair if I had my head down.

    Make sure that anything you need is low (food from cupboards, lotions) so that you don't have to raise your arms up.

    Get something to prop you up in bed. I read that recliners are your best friend after surgery. I would've loved to have one because your chest feels like it's going to cave in when you lay on your back. However, I didn't have a recliner, so I bought a pillow (http://www.bedbathandbeyond.com/store/product/heml...) so that I could sleep sitting up for a while.

    Take your pain killers. They give them to you for a reason. I do not like to rely on pills, and I lived on them for about 4-5 days. After that, I slowly started weening myself off, as long as I felt like I could handle it.

    Wear easy clothes. I lived in a robe and my amoena camisole for the first week. (http://www.metromedicalonline.com/amoena2860.html#...) The camisole was a life saver. I'll post a picture in a sec. After the first week, I lived in my camisole and button up shirts. There was no way I was lifting my arms to go in an over the head shirt.

    Finally relax. Watch movies and destress. The first 3 days, I was hardly awake because of drugs and I couldn't be happier that I slept those days off. Take care of yourself.

    It is all doable. Nothing is ever as bad as you expect and even when you feel it is, it gets better!

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  • Moderators
    Moderators Member Posts: 25,912
    edited January 2016

    Hi varapappas, and welcome!

    In addition to the great advice shared by Veronica31, there's some great tips in the Surgery forum thread Shopping/packing/to-do list for surgery + recovery.

    We hope this helps!

    --The Mods


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  • Veronica31
    Veronica31 Member Posts: 97
    edited January 2016

    This is a picture of me a few days after I got home. You can see some of the drains in the pockets (the pockets are actually on the inside but I safety pinned them outside because it was easier for me). The black bags are nerve blocks. I highly recommend getting those. It makes it all more bearable.image

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  • Englishmummy
    Englishmummy Member Posts: 337
    edited January 2016

    Varapappas,

    I had my double mastectomy in June of last year. I have had my exchange surgery too (October). I am a little older than you at 41 but still classed as 'young' in the BC arena. I have/had no other existing conditions and also did not do chemo or rads. I had a paravertebral nerve block and onQ pain balls - they are the best. I was in so little pain after the nurses almost refused to believe me when I would say I was at a 2 on the pain scale. I am stubborn and did not want to take the Narcs (no prizes for being a 'hero' let me tell you!) but as it was when I got home, I took 1 Oxy and 1 Norco, after having nothing via IV in the hospital then decided to switch to extra strength Tylenol: 2 in the morning, 2 at night. I had no bruising and very little swelling (I think the arnica helped there). I was almost back to full duties (I stay home with my children, we homeschool :) so it was a little easier for me I think than many - I did not have a time crunch to get back to work. My hubby took 2 weeks off, but I was certainly glad to see him go back to work and get on with everything myself - although I could not shower for 2 weeks as I had my drains for that long and he was a super big help with all that stuff. I wasn't allowed to lift my arms above shoulder height for 6 weeks but all that stuff varies from surgeon to surgeon, don't be surprised if yours says something completely different. I just wore button up shirts with the tanks that the nurse navigator gave me (had little velcro pockets inside).

    I followed the same protocol as Angelina Jolie (bar the fact that I actually had Bilateral BC) - I am not a celebrity watcher but my hubby thought that she likely had the best care available and my surgeon and PS were both amenable to doing that. I did not read anything about Mastectomy prior to my op other than the medical versions, I did not want someone to sway my thinking with a bad experience, I gave myself only 1 possible outcome and it had to be a positive one. I know several people that had an infection after surgery (major Staph infections), it's a scary thought for sure but I just believed it wouldn't be me......I wasn't a candidate for DIEP or other forms of recon so implants were where it was at! You can see said protocol here http://pinklotusbreastcenter.com/breast-cancer-101... - scroll down to stage 4 & 5 and of course, check that your surgeon(s) are comfortable with you taking any/all of the supplements should you decide to do that. I did follow it to the T, and it was super smooth sailing all the way along, from my BMX through my exchange - the only hiccup (so, so small in the scheme of things) was that I was allergic to the scrub they used in my exchange and broke out in a hideous rash over my arms, chest and stomach. I came out of surgery almost the same size as I went in and when I did my exchange I ended up with 475cc anatomical implants which gives me a D cup - much bigger than I was previously (I am pretty small - 5'6" and 115lbs). I did not tell very many friends or family about my surgery or diagnosis, and no one would ever guess by looking at me now. My new boobs look great! They feel alright too! Perfect, no - but they most definitely weren't before (especially not after Breastfeeding 3 babies back to back:) and I never expected perfection. I am not sure how much bigger you can go, as it is so individual, but the PS will cover all of that and then there is our very own 'Whippetmom' - who is dynamite in the implant/exchange information scope. https://community.breastcancer.org/forum/44/topics...

    I had a great surgeon and a truly fabulous plastics guy - he really convinced me to go with the recon. if only for psychological reasons. I am glad he did as I know that it was the best route for me. I healed incredibly well after both surgeries. I know that having a BMX was the right decision for me so sure I was, that I had my surgery prior to the oncodx coming back and 16 days after my diagnosis. My oncologist told me yesterday, between my low oncodx score and the BMX my local recurrence risk is to 3 or 4% - whatever that really means, IDK - but my brain likes it for now. I try not to read the stories of recurrence, although it is hard not to. Like you, I wanted to avoid rads and chemo (if possible). My new boobs look great! They feel alright too! Perfect, no - but they most definitely weren't before (especially not after Breastfeeding 3 babies back to back:) and I never expected perfection. I am not sure how much bigger you can go,as it is so individual, but the PS will cover all of that and then there is our very own 'Whippetmom' - who is dynamite in the implant/exchange information scope. https://community.breastcancer.org/forum/44/topics...

    There is also some information here on surgery and prevention of recurrence: My surgeon did this. https://community.breastcancer.org/forum/73/topics...

    This is so scary, and you are so young but it is completely doable, you really can get through it. I am 8 months out and it seems distant even to me. What the future holds, I have no idea and no guarentee - but the truth is, I didn't before. I have been taking Tamoxifen since July, and so far, have no problems with that either. Sorry this is so long, I close in saying stay strong and know we are here for you, this community is here for you - on the good days, but more so on the bad days.

    Laura x


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  • mmshea
    mmshea Member Posts: 15
    edited January 2016

    Dear Laura,

    I came across this thread and just wanted to reach out to you...I was diagnosed 2 days ago and am in the information gathering stage...I am 41 and the mother of 3 little boys. I am leaning toward having a BMX. I have a strong family history and have known several friends who have had a recurrence after a LX with radiation. I am concerned that my BS wont do it, as I have only been diagnosed with ILC on the right side, but the MRI showed some questionable areas on the left. Basically, I am in shock and trying to figure out a way to move forward. I know having a plan in place and finding a surgeon I like will also help. I am meeting with three BS this week and hoping they will provide some clarity. I just wanted to say thank you for feedback on this post because it provided me with some good insight. Wishing you health.

    Megan



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  • Laniem
    Laniem Member Posts: 5
    edited January 2016

    I am so grateful for this discussion group. I would've never known I have breast cancer if it wasn't for the 3-D mammogram. I am forever grateful for its invention. It showed I have Invasive Lobular Carcinoma. I had a lumpectomy 2 weeks ago for a primary tumor they thought was 2 cm (and one hiding behind it) and after pathology came back it turned out to be 4 cm and my margins were not clean and invasive tumor cells in the lymph node! My surgeon says Invasive Lobular is a "sneaky bastard" and likes to hide. I was going to have a 2nd lumpectomy to remove the rest of the cancer but after seeing my oncologist and after he and my surgeon consulted with each other, I am going to be getting a double mastectomy and then chemo! unbelievable - I am still in shock! I really thought I was just going to get a lumpectomy and radiation and be done with it. I am in crazy information gathering mode right now so reading your posts is so helpful.



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  • Englishmummy
    Englishmummy Member Posts: 337
    edited January 2016

    Lanie,

    Sorry you made your way here but glad you are finding lots of information! Ask as many questions as you need, of your Drs and the BC.org community, there are some super people on here - supportive and knowledgeable.

    You have a plan, run with it! Hugs, Laura x

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