Latest Update - Post Surgery during Pandemic

[Karina66]

Hi All,

Just thought I'd post an update. I ended up opting for the double mastectomy, and had the surgery on St. Patrick's Day (March 17th). Considering the hospital was already in COVID-19 lockdown mode, I'm glad I went ahead with the surgery since now most surgeries are postponed. Also the plastic surgeon did not want me out with other patients in a room, but kept me in the Recovery Ward through the day and night stay I had in the hospital. Only stayed one night and discharged the next day. I had 4 drains and had those removed a week afterwards. I opted to not do reconstruction at this time and see how it goes - the look and feel of being flat - so far not too bad - I think once the stiches aren't so noticeable I may get use to it... I'll see... taking it one day at a time.

Ideally I would have signed up for some physical therapy but given the pandemic I've been doing exercises I got off the internet at home daily(Memorial Sloan Kettering website). So far movement is improving at week 4. I don't really have much pain other than the discomfort of feeling like tight skin and sensation of pulled muscle on the right side where the breast surgeon removed any tumors tissue. I send photos and emails to my doctor on a weekly basis just to be sure that everything is healing as it should - the doctor has responded to all my questions and concerns right away - so I'm thankful for that.

The Pathology report is all clear - and the sentinel lymph node removed was clear as well. I am still going through the balance of my Herceptin & Perjeta infusions every 3 weeks, but have noticed now that the sole of my feet are dry and cracking and having allot of tingling and numbness - more so than when I was on Carboplatin and Taxotere(which finished Feb 14th). I spoke with my Oncologist and they have taken me off the Perjeta to see if that lessens the symptoms. I also lather moisturizers on my feet which helps as well for the cracking, but not sure what I can do about the numbness and tingling feel - any suggestions?

I am told I will need to be on the Herceptin for a year, which would mean till October - since that is when I started it. Right now just staying home to avoid contamination and taking some vitamin C and Zinc supplements. Like all of us here fighting cancer and going through a deadly pandemic isn't anyone's idea of stress-free environment, but I'm trying to stay calm and strong - even if I do contract the virus. I live with my parents who are in their mid-late 80's so I'm actually more concerned for them than for me - but I am keeping a watchful eye out for any symptoms.

Hope everyone is staying safe and healthy.

Kind regards.

[PJBinMI]

It sounds as though you made the right decision for yourself! I'm glad you were able to get it done before the hospital quit allowing surgery other than Covid 19. Ask the onc nurses about what skin creams they recommend. The pharmacist here in my small suggested I try Aloe Vera gel for my dry skin. There are so many creams out there....hard to know what is best for the various dry skin issues we can have. Gabapentin is a med sometimes prescribed to help nerves regenerate. You could ask your onc if it might help you. I hope you keep on doing well! And these sure are strange times. Sometimes I think I am really lucky to live out in the boonies in the middle of 10 acres of woods where my husband and I can live comfortably without seeing other people at all most days. But I do miss friends!

[AnnieAppleseed]

I had my first mastectomy in Aug/Sept 1995. I also did not do reconstruction. I am chemically sensitive so it wasn't a choice, although I would have chosen it anyway. I had a left one a year later. I enjoyed NOT wearing a bra. But be aware - there can be 'electric' charges in the breast - it's nerve endings saying 'hi'. Not fun but not dangerous, just odd.

To reduce internal scar tissue, you can rub organic cocoa butter in the area of scar when it heals more. Good wishes.

[Karina66 in reply to AnnieAppleseed]

Thanks Annie for the advise, I've been using coconut oil. When you had the mastectomy did you have the concave indent and hard edges around the indents? My plastic surgeon said the outlines will eventually fill in, did yours? I've been doing gentle massages around them, it's not painful, just hard maases. On the right side where the tumors were seems like a much deeper incisions were done and harder mass line near it. The surgeon said with time this will look and feel better...I guess I just don't know anymore what will be normal looking vs. different.

[AnnieAppleseed in reply to Karina66]

I am not sure what hard edges mean, but scars get better and less obvious over time. but concave yes. It does get better looking over time. I was so lucky that my partner was willing, endlessly telling me how beautiful I was. That definitely helped recovery. Good wishes.

[gladudey]

Hi Karina,

Just to let you know that Underneath It All is opening on May 15th. They are great with prosthesis and bras, I've been using the Amoena brand since the beginning (15 years ago). Been in touch with Kate, one of the owners, and she is sending us (at SHARE) pink and teal bandanas for our ladies. Kate is survivor and uses their products. So, nobody better to help you! If you would like to communicate with her, just call our SHARE HelpLine number and leave a message for me, Gladys. I'll get you two together. More than ever, we are here to help each other. And yes, I'm almost up there with your parents, and we are all together! Best, G.

PS. The bandanas are coming to my home in B'klyn.

[Karina66 in reply to gladudey]

Thanks Gladys, I will call and leave a message. I've looked at some websites for prosthesis and bras as well as the Amoena brand products. I've been trying to see first what if anything my insurance (CIGNA) will cover, since some of the prosthesis can be expensive. There are so many options and sizes, for me, I'd like something lightweight. I did buy, on Amazon, a foam breast forms - brand name Braza size 6, and it works well in my existing bras and it's very light weight. I would like to see about something for swimming, although I think with the Pandemic, pools may not be open this summer...we'll see.

Thanks again for the tip and I will keep an eye open for Underneath It All opening.

[gladudey in reply to Karina66]

When I first went to Underneath it All, I saw a young woman who didn't use the products. But I was led to purchase regular prosthesis. Flat in the back, so the bra liner was all wrinkled and pressing against my chest, and marking it all up with indentations. So, decided to fold it and stitch it up to make it flat. Still uncomfortable and sweaty! I had already investigated all the brands on line and also from the American Cancer society list of places which sell different brands and saw that number one, sold by all, was Amoena. Then went to their website and was amazed about what I saw. You see, my mom and aunts had BC 50 years ago and bras and prosthesis were awful! Amoena has it in shades and styles and it's a joy.

Three months later went to NYU breast center for a Oncologist consult. On the same floor there was a shop. What's this I thought?

Went in, met Kate, same store (then a branch), explained it to her and in two secs. she gives me a prosthesis that is concave in the back! She takes my bra, removes the stitching I had put in, the lining fit perfectly molded to the inside of the prosthetic, and I felt totally comfortable. Waiting to feel sweaty and it never happened!

About insurance, I was 66, and had Medicare. It's all covered under Medicare! We get 6 bras per year!

[quilting66 in reply to Karina66]

I've been taking a crochet class and as a recent BC survivor I happened to see that there are organizations that knit and crochet prosthesis that are light and comfortable. Don't know if they are helpful to you but it sounded interesting. You might look into it.

[cinderl8t]

Hi Katrina,

I hope you are feeling well today. I was diagnosed in 2004. Inflammatory - chemo, double mastectomy, more chemo, radiation, a year of Herceptin (which then had just come of of clinical study), then reconstruction. I seem to have been one of those people who they speak of in the commercials for medications when they talk about side effects, because those things just seem to follow me.... We kind of just shrug our shoulders, laugh, laugh, or say it’s Laura.

It’s a new normal I was told 16.5 years ago. And, that’s true. I was single, lived alone, went to most appointments myself, and learned so much about myself, reflection, changes I wanted, things that weren’t that important, what was important, and who my real friends were. And, I was surprised more times than I can count by beautiful acts of others, many done anonymously.

I was a mentor teacher/ reading specialist, then coordinator of an English Language learner program for a district during and through this period. Being around kids helped and immune system-wise I had to be careful. You have to take care of you! If you have questions, ask. Where in the country are you? I’m in Arizona. The heat is already on as it was 104 yesterday. I’m already dreading the summer.

[Karina66 in reply to cinderl8t]

Thanks Laura for your feedback, wish it was warm in NY - it's been raining pretty much all week - but I guess that is what they mean by April showers. I was taken off the Perjeta since I was showing some signs of hand/foot syndrome on the soles of my feet, but now they are much better. Oncology wants to maybe start it up again along with the Herceptin - but I'm not really sure what Perjeta is intended to do other than maybe boost the effectiveness of Herceptin. I'll see what happens when I'm back on it again. I've also noticed my thumb nails changing color and seeping clear liquid, spoke with Oncology and it's basically another side effect post chemo - my other fingernails look fine, it's just the thumb nails - I was told to soak them in Epsom salt. The discoloration is occurring in the middle of the nail bed and I don't have any redness or soreness around the nail cuticle or sides. I did do some gardening a few days back maybe I may have pulled on the nail. It just looks like I hit it with a hammer and the nail is bruised (although I did not hit it). Oh the joys of chemo side effects!

Take care be safe.

[CancerkickerKathy]

My suggestion for the tingling is vitamin B complex. I have neuropathy from the chemo and that is what was suggested. I think B2 specifically, but the complex seemed to help. Stay strong.

[gladudey]

Hi Karina, how are you doing now? Best regards. Gladys

[Karina66]

Hi Gladys,

I'm doing good. I finished the IV antibiotics and had the PICC line removed. I am continuing with my infusion treatments of Herceptin & Perjeta via vein infusions. The nurse wasn't able to find a vein on the first go, but the second time Eureka. The infusion is much shorter duration- 1 hour - vs. when I first started the chemo which was close to 6 hours so it's not bad. My hand is still bruised from where the vein was found, but I'm also still on the blood thinner Xarelto due to the blood clot I had gotten from the Port infection so bruising is just part of the course. I think, though I won't be needing the blood thinner for much longer - seeing that doctor next month to confirm. I only have about 5 more infusions to go to complete the full 1 year treatment - so I'm just hanging in there with hope & optimism all will be well and go well. Wishing the best for you too.

[gladudey]

Hi Karina, your message was of 14 days ago and I just received it! Happy you did so much and your hope & optimism are alive and well!!!! That has a lot to do with your recovery! Keep it up! One of these days you'll be helping others!

This way you should have a happy Thanksgiving this year! Don't think we can celebrate the disappearance of Covid by then... So be careful! Best, Gladys