Diary of a bilateral mastectomy
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badger and all: Good vibes right back to you!
Julie
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bump :-)
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bump :-)
thinking especially of anyone who, like me, got cancer for Christmas {{hugs}}
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I guess this is my diary of sorts.
I have decided to draw the line, I had my BMX with recon on May 11 2010. Everything was great until I got an infection on the tumor side. Left side no issues TE still in today uncomfortable at times. Took the right expander out had my chemo since my tumor was 5.5 cm and 5/10 had cancer 1 of the 5 metastasized next to tumor. Last chemo Oct 1st yea, was scheduled to try to redo the TE in right side before Rads, Nov 9th was very uncomfortable during Thanksgiving. Returned to work on Nov 30th and found seepage on incision call PS got in found I had cellulitist and incision not healing. On Dec 9th found a whole in the skin got bigger and had to take TE out again. Start Rads on Monday so happy to get that started after lingthly delay. Talk to BS on 1/12 about deconstruction and what to expect. Talk to PS on 1/14 to give him my decision. I plan on talking out TE on left side and smoothing out skin, whatever it takes. Please Please do extensive research prior to your surgery. I have problems with circulation and I know that was a contributing factor to my rejection of TE and I am not doing an LD Flap even though there are good success stories out there. I know my PS will not be please with my decision since he has worked so hard on my recon. What is important is your health and quality of life. I thought it was a process, diagnosis, see Breast Surgeon (BS) about options (she felt I was a good candidate of BMX with recon) get tests done, had 2nd MRI with biopsy on left side due to some concerns, See PS. Had surgery, did not see Onco until after surgery to remove first TE. Did not talk to the radiation onco until after my 2nd surgery decision etc, my story is not positive or successful right now since I am still in the middle of it but it will work out in the end. I work through most of this as well. I have kept positive though it all (except this last surgery), and sometimes you have to go though pain to see your strength. Trust God, listen to your DH (husband) and listen to your instincts. Take lots of notes and research. I did not do enough and I am working through it. You can let cancer be your curse or a blessing. I choose blessing because it has made me stronger in my relationships with my savior, my family and my friends and made some awesome new friends that have gone on this journey before me. Onward and upward. God Bless all of you and sending positive vibes to each and everyone of you who are just starting your journey.
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Thought I'd follow up and post my diary of my BMX as well - in part to keep this thread going.
In September, 2008, my mammogram showed calcifications in my left breast. Needless to say, this threw me and my husband into a major worry spin, which was made worse by having to wait one month before a sonoscan could be performed. The sonoscan results at that time indicated that the calcifications were not malignent. My 2009 mammogram didn't show any changes.
In August, 2010, I felt a hard spot in my left breast, and immediately contacted my General Practitioner (GP). She ordered a sonoscan for me. The radiologist looked the sonoscan over, and scheduled a stereotatic biopsy, which then indicated that I had DCIS Stage 0 in my left breast.
Since I didn't want to go through more worry, I decided to have a BMX, even though my right breast didn't have any indication of cancer. On 09/17/10, I had this surgery, complete with reconstruction. The good news was the tumor (7 cm x 4.5 cm x 2 cm) had not spread to the surrounding tissue. Therefore, I am blessed with not having to do chemo, radiation or drugs like Tamoxifen.
On 10/17, I had a second operation to excise necrosis on my left breast. Once that healed, I received fills every two weeks until 12/6, when my PS discovered that the TE under my left breast was leaking; I had that replaced then.
On 12/27/10, I had a colonoscopy, which came back normal - more good news.
Today is 12/30/10, and I am counting my blessings again. I am enjoying breasts that are finally balanced with my hips (my breasts were always about 1.5 inches smaller than my hips) and have decided to treat myself to liposuction of my thights and butt as my way of enjoying life.
Strength to all of you going through this. My faith in God has gotten me through this; my DH has been my backbone, as well as my family and friends.
As mjbmiller indicated, do as much research as possible. I spent countless hours on the Internet, surfing for all information I could possibly get my hands on. Talking to friends and family always helps - you'll need a support system.
And, allow yourself to cry and get those bad feelings out. I was so drained after talking to doctors that I would take the rest of the day off of work. Due to my complications, I won't be returning to work until the implants are placed. Please take as much time as you need to heal - emotionally and physically.
{{{HUGS}}}
Julie
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mjbmiller- It is your decision. Do not worry about "hurting" anyone's feelings. It sounds like you have been through hell and back on top of the BC. The circulation issue is huge and very important for us all to know. My PS will not do my exhange until six weeks out from my having quit smoking completely for that very reason. It has been a concern of his since day one. Which is why I could not have my nipples spared althought here was no indication of cancer-he said that is what will "fail" the most easily due to your smoking history. I think the dangers are either minimized or blown up- just like everything with this damn disease. Sometimes it seems the disease itself is conquered but the cure kicks us in the ass.
If you choose to go "smooth" there are plenty of women who have done the same thing. There are photo forums with pictures and discussion. I think if you contact timtam she can let you know how to access it.
BIG NEW YEARS HUG TO MY FELLOW TEXAN! (and everyone else everywhere!)
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Thanks for the feed back, I have contacted Timtam but we have a major filter on our computer that will let me log on but not access the site. I have been very interested in getting this done. My PS is kind and considerate but I think puts a lot into physical appearances. Probably most PS do. I have to wait two weeks to see him and week and half to talk with BS. But over all I am at peace with my decision, now waiting to talk about the plan.
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Bump (to keep thread active).
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YEAH! Second fill today! Dr Shanaq (PS) is truly an artist and so careful with how he is doing my reconstruction. Virtually no pain- just a little pressure. I sailed out of there. After crappy days and fears of just about everything, it is cool to just feel good about myself for this moment.
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{{ bump }}
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Hi Julie, Kim,
You have no idea how amazed I was to see your posts!
I would love to hear how everything has been going, what treatment you have had, how you feel about things now, and what's on the horizon....
I pray all is well with you both!
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I've extensively edited this diary....to have more information that could help others during various stages of their treatment.....and to have less useless words, as best as I can.
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Hello, twinkly and Everyone:
Thanks for asking about me. Today is 05/01/11, and I've had my final implant surgery on 01/24. I will be posting the photos here, as soon as I have the nipple reconstruction some time in July.
Right now, I'm feeling quite well. I've lsot about 15 pounds from 01/24 to now (all intentionally) and am back to work. Also, I'm taking a UCLA Extension computer course. I have my 6-month oncology followup; no reason that shouldn't come back clear.
Although I detest the scars at times, I know I have to be patient and wait for them to fade. I don't have any keloids to speak of, and am just waiting to see how the final results turn out.
I'm keeping this thread as one of my favorites, and will check back to see how everyone is doing.
{{{HUGS}}}
Julie
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Ladies, I'm having my BMX next month and want to know about what I should get to prepare for dressing! I'm having a skin sparing BMX for later reconstruction. Do I need a bra/camisole? What type? Do you start with boob inserts right away, or wait for swelling/healing to go down?
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Hi Julie,
Congratulations on the weight loss!! It's great to hear how well things are going, and all the other events in your life!
It is so great to read all your positive energy - between the lines - it does my heart good on this Thursday morning.
BIG hugs and best wishes for your big finale coming up in July with the new nip's!
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Survivor - have qtips, 4x4 gauses and safety pins. I got post surgical cammies from the TLC web sit the American Cancer Society puts out. For my surgeries the hospital put on me stretchy/Velcro top that I was able to attach the drains with the pins on. Also, if you are able to take showers, get string to tie to the drains to and tie around your neck. PM me if you have further questions.
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I just radical masectomy and have 4 drains I just want to know if is painful when they come out?
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coni I had two drains removed after bmx and it was uncomfortable but not painful.
The actual length of the drains surprised me, but they came out fairly easily.
Make sure your doc OPENS THE PLUGS on the drain bulbs to release the suction.
I did take a pain pill before the appt. Good luck and gentle {{hugs}}
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Thanks badger I'm getting so anxious about drains, I don't deal good with pain I'm a big wimp.
Thanks made me feel better!
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Slight pain but big relief after. Take a deep breath right before they take it out.
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thanks ladies! im a big wimp and have no pain resistance
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{{coni}} I am a known weenie when it comes to pain, and for me it was OK.
I was so relieved to have the doggone things out, it outweighed any temporary discomfort.
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lol thanks badger I'm taking Tylenol and Ativan literally my mind is going wild lol picturing things I dont think I should
aaahhhhh I need to do that lol0 -
Hi Coni, drains are a pain in the butt, in every way! Like Badger, I took a percocet before I had mine out....one side came out beautifully, but the other not so great....
And Badger is right....the length of them is surprising, but having them out once and for all was much better than having them in. Hope it all worked out for you!
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yes it did thanks no pain at all, but now my armpit is completely numb, my chest feels tight! doing my exercises... did any of u have staples? does that hurt when they come out?
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coni - yay for drains coming out and double yay to no pain!
I did not have staples so maybe someone else can answer that question.
Just want to say remember you are healing on the inside so take it very easy on yourself.
IDK if this is accurate, but the way I thought of it was that the inside (the stuff I couldn't see) was healing apace with the outside (the stuff I could see).
If you're like me, your chest may be hyper-sensitive for a while. What helped me was to gently place my hands on my chest. The touch and the very light pressure relieved a lot of that prickly feeling. That subsided after a few weeks. Could not wear anything but natural fabrics against my skin for a few months so bought some silk camis at Winter Silks outlet for not a lot, and wore them under everything. All-cotton was good too but no polyester or synthethics at all.
Glad you're OK - gentle {{hugs}}
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yes!! it's so sensitive even taking the gauzes omg! it feels weird! I can't even wear those temporary prothesis that come with camisole I found a sports bra, so wearing that to cover..
I hate looking at myself inthe mirror but I guess it's just matter of time to get use to it..
I can move my arms a bit more not like normal movements but improving I find when I first wake up is sooo stiff but once i shower I get better, yesterday I was able to sleep somewhat better cause I took a quarter of the pain killers I exercised so arm was a bit sore quarter of it knocked me down lol...can we put warm compresses? muscles to relax?
thanks so much for sharing with me0 -
I didn't wear the poofies either, I had gotten a couple of the Softee two camis to deal with drains, and wore those for the first two weeks. Got the silk camis when I went back to work two weeks later.
Didn't do much of anything for the first week except sleep and take meds on schedule to stay ahead of the pain. Stay hydrated and take a stool softener because pain pills will back you up. Sorry that's yucky but you need to know that!
Started gentle movement week two but still not much lifting or stretching. I was surprised by how many everyday movements use chest muscles. Didn't use warm compresses though.
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kk yeah I'm finding that exercising really hurts it's only been 9 days since surgery, I feel my left arm where they took nodes very weak, and more numb then the other side...
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Hi Coni,
The numbness under the arm lasted quite a while with me....now, 2 1/2 years after my operation, lots of massage has made it so those nerves are regenerating. I started seeing a massage therapist trained in scar and lymphatic recovery...and it's working like crazy! She does these tiny movements with her hands....I feel this burning pain - almost like I could draw a line to show exactly where the pain is, and then she says 'that adhesion just let go so easily!' She is starting to work on the big ball of scar tissue in my armpit, and it is slowly disappearing. I Never would have thought any of this is possible, but it's working. If anyone lives in Calgary, pls meg me and I'd be happy to give you her name.
My surgeon says it takes longer to heal on the inside than on the outside. I had 72 staples removed, and they came out very easily....just little pinches, not the brief burning pain I had when the drains came out.
What's really really important is you do the exercises before radiation starts. What you achieve during the operation and radiation will make a huge impact on your quality of life, because radiation kind of cooks the muscles, and they will never feel soft and supple again, without lots of massage. Use any oil with vitamins, like olive oil or almond oil.
It took me a long time to come to terms with what I saw in the mirror. And I'm not ashamed to admit there are still days that come along when I feel sorry for myself, wishing my reality were different. But, everything I've learned on this journey makes it so these sad times don't last very long - and coming here to be with you, and share with you is a big part of it.
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