Spring surgeries

If you would like some Tips for your upcoming surgery I just posted Tips for Bilateral Mastectomy with immediate tissue expander with details about my journey.

Hopefully you can find something useful in that post.

I wish you good luck!

Hi!

I think flowergirl1975 and I both had a double mastectomy (simple) on May 31! How did it go for you? If 1975 is your birth year, we're close in age, too. I'm 50. My surgery went fine, but I had one really rough night of vomiting from the anesthesia. It was rather shockingly bad for a few hours and I was super-weak afterward, but now behind me. I'm sore, but they gave me two different kinds of nerve blockers so I have only taken Advil and Tylenol so far to deal with the soreness. The nerve blockers will wear off in about a day, so I'll see how I feel then.

One thing that's weird is that I actually have substantial pain from things they did during surgery that were unrelated to the actual procedure. They injured my lip when they intubated me, which hurts quite a bit, and they also seem to have bruised my abdomen with the "seatbelt" they used to attach me to the operating table.

My surgery was largely prophylactic (I had "extensive" LCIS that was discovered in my lumpectomy to remove ILC 6 months ago), and I'm very happy that my pathology report this time said that I had no additional invasive cancer in either breast. I didn't have any lymph nodes removed this time - they took out 8 with my lumpectomy - so I only have the mastectomy incisions.

I am not planning to do reconstruction, and I haven't looked at my incisions yet. I know I will need to do it soon, but I also know that it will make me feel a bit ill. Dealing with the drains makes me feel lightheaded, but fortunately, my husband is not squeamish and has been helping. This is by far the biggest surgery I've ever had.

I can't offer any advice since I'm just going through it now (except perhaps to take some anti-nausea meds after the surgery!), but I thought I'd post about my experience so far and hope to connect with others who might be going through it as well. Here's to a quick and easy recovery for all!

Hi All! Hope everyone is doing well and having a quick recovery :-)

devoinaz- yes it looks like we did have our surgeries on the same day! We are close in age, I am 48. I was an emotional mess before the surgery. Broke down in the operating room and a sweet nurse held my hand. I would say overall I am doing pretty good. Spent one night in the hospital. I barely remember them giving me a nerve block, I am so glad they did! I dont have much pain as far as surgery goes and Im about 2-3 days out. Still taking advil off and on throughout the day and then tramadol at night. The drains are very uncomfortable! I had one in a few weeks ago with a lumpectomy, I was so worried I would accidentally pull one out. Since I have been dealing with this since March I did not want to prolong surgery/treatment and have to wait to get into a plastic surgeon, plus added recovery time for reconstruction. I just decided I would worry about having boobs later. The prosthetic bras I have seen look quite real, not sure how anyone would be able to tell the difference. I'm nervous about seeing my chest since surgery. :-( Not looking forward to that at all!

Flowergirl1975, are you still doing ok? I'm doing ok and don't have much real pain, but my two sides are not at all the same. One is draining well and flattening out really nicely, and the other is pretty badly swollen and bruised and not draining well. I'm pretty sure I've developed a large hematoma there. I called the doctor over the weekend, but because it's not an emergency, they don't really want to talk to me.

I hope that they will agree to see me tomorrow in the breast clinic and can do something to reduce the swelling. It's quite uncomfortable, and the bruising and swelling is expanding to other parts of my body as well - I have swelling and a big purple spot on the front of my groin area! The doctors are unconcerned, but I never knew that could happen and I want it to stop!

Updating again - I was right that I had a large hematoma - 250 ccs! I went to the breast clinic Monday morning, and was in surgery again Monday late afternoon to remove the hematoma. I'm so glad that my surgeon was available and able to fix it so quickly for me. I'm a bit more sore now because of the additional aggravation of the area, but both sides are flat now so I can heal properly. My surgeon said that size of hematoma would take months to heal on its own - and maybe never would.

What I learned through this experience (that nobody told me before) is that if you have a bit of soft swelling after mastectomy, that's normal, but hard swelling, especially if it's substantial, is a problem. It's really hard to know when you've never been through it!

ms meow - good luck with your radiation treatments. I didn't go through that, but I did have chemo, 4 rounds of TC because of my high Oncotype score (27). I finished 7 weeks ago. It wasn't fun by any means, but it is manageable. I kept working part time, and even took a combo business-fun trip in the middle for 5 days.

devoinaz- I am here :-) Oh my gosh I am so sorry you had to go through that!! Are you in any pain now? I am doing pretty good. I went to my post op appt today and was able to have my drains removed-thank god! I have been having an awful time sleeping so Im looking forward to sleeping on my side tonight :-) My chest is still pretty numb and feels tight under my arm pit. No pain though. I have not seen my new chest yet, just not ready. We have a medical supply place that you go and they will fit me for a prosthetic bra. Thats on my to do list. Tomorrow I have an ECHO before chemo. I should be starting that in the next week or two. I think chemo is going to be worse than the surgery by far. Sooooo not looking forward to this part. All I know so far is I'm having AC, 8 cycles every 2 weeks. So basically 4 months of feeling miserable? I sure hope not. Im really trying to look at chemo as its going to save my life….but its hard sometimes!

Hope everyone here is doing good. Sucks we have to go through this crap. Stay strong!!!!

devoinaz- ugh Im so sorry you are still in pain. Are you trying to ice it at all, not sure if that would help? Yes not expecting to be at my best the next few months. Im going to try to keep working, knowing that I may need to adjust my work schedule some depending on how I am feeling. I did look at my chest too this morning. I figured since I had to go have an Echo done today I wanted to see my chest in private beforehand. I feel like I took it pretty well, no tears were shed. I mean it is my new body and I will get used to it. Trying to get things started to meet with someone for a prosthetic bra fitting. Thats good that your chemo wasnt too awful, keep your fingers crossed for me that I have the same luck :-)

Hi Everyone! Hope everyone is doing well :-) The surgery bras are not super comfortable. Very tight around my rib cage. Im only a little over one week out from my surgery so I still have to keep mine on 24 hrs. A lady from a local medical supply place is supposed to be contacting me to schedule a fitting for a prosthetic bra. Anyone else here doing something along those lines? I guess its called Radiant Impressions, they are custom made foobs (fake boobs). Much of my chest is still so numb, such a weird feeling.

Bennybear - your incision opened back up??? Ouch! Hopefully all is ok.

Flowergirl1975 - I did 4 cycles of TC chemo from Feb-April of this year. I have lots of suggestions - mostly related to using ice! My biggest one is to ice your hands and feet during the T part of the infusion - actually start icing 15 minutes before and keep icing 15 minutes after. This reduces your chance of developing neuropathy, which sounds really not fun to me. I iced like this, and had zero neuropathy issues on my hands and feet. It's good to ice your nails as well, otherwise they can fall off or crack. You can get ice pack mittens and socks to accomplish this, or just use literal bags of ice.

Most people apparently don't have this next problem, but the one place I did get neuropathy was on my tongue! I didn't ice my mouth during my first T infusion, and then my tongue felt like it was burning for 2 weeks! So after that, I iced my mouth as well as my hands and feet. It was a bit of a trick to do because I kept having to take my hand out of its ice to put more ice on my mouth... But it worked and I didn't have the burning tongue problem again.

And my last icing suggestion is that you might want to consider icing (aka cold capping) your head. It's not necessary, but with TC, a lot of us are able to keep about half of our hair with icing and not need a wig. I was lucky that the cancer center I go to had a head icing machine called Paxman, and it also was partially subsidized. Cold capping can be a bit pricey. Anyhow, my hair is very thin in a couple of spots now, and once it starts really growing back (which has not yet happened in any obvious way, but soon!), I'm thinking I'll cut it all short. BUT, the thing I liked about not losing all my hair is that if I didn't tell people, they didn't know I was a cancer patient. I just adopted a hair style with wide headbands. I guess a wig works for this, too, but because I live in AZ where it's really hot, I thought that would be pretty miserable.

In any case, best of luck with the chemo. I found that I felt truly bad for just a few days in each cycle, and would then mostly recover before the next one.

@bennybear - sorry to hear that you might need to do chemo as well! I had to do it because of my Oncotype score. It was 27, and everyone was surprised when that result came back because my cancer was lobular, and those usually have low scores.

@flowergirl - on the hair question, I didn't dye/highlight my hair before chemo, so didn't have to think about this. I think I'd do it now, though, if that's what you usually do and you're planning to cold cap. They say that if you cold cap, you're not supposed to color or really even do much styling of your hair during chemo and for the 4 months afterward. You hardly even wash it, actually! The chemo drugs reduce oils on your skin and scalp, so not washing is not really a problem, but not being able to do your normal styling can be an issue.

I conditioned and gently brushed my hair every time I showered (so, most days). I have curly hair, so I never brush it dry anyway. Right after my second infusion, it felt like about half of my hair came out in one day. There were a few other days around that time when I lost substantially more than on a regular day, but that was nothing like my big shed day. It was quite alarming when that happened, but the shedding slowed down a lot after that, and I never had another big shed day through the rest of the treatments.