Bilateral Mastectomy Pain
Hello everyone, my first day here, and thankful that I asked about support groups and they suggested this group. I was diagnosed Sept 25, and went through 6 rounds of chemo, and just had a double mastectomy on April 6. I still have two drains in, hopefully will be out by Friday. I know it's still early in recovery, but I feel like my boobs are still here weighing me down when I get out of bed. It's painful, but weird pain. Anyone know how long this pain will last? My surgeon says could be 6-8 weeks, but I'm impatient at this point. Been staying away from narcotic pain killer they gave me, just been taking Tylenol and Ibuprofen. I did have clear margins, and negative in the four lymph nodes they took, but there was still a small bit of residual cancer left in breast, so will be starting Kadcyla treatments on May 19, for 14 rounds. I'm nervous about nausea and side effects as chemo was brutal for me with the nausea and constipation. My oncologist says since it's just one medicine this time, compared to four the first time around, nausea should be a lot less. Anyone have any experience with Kadcyla? My treatments are at University of Kansas Cancer Center, Briarcliff location, and they have been fabulous there. Appreciate any insight and information.
Hello! I am happy to talk to you...give me a call 816-509-3972. Probably easier to just talk to you vs type:-)
Kelly Pitzer
In short, if you have expanders, they are very uncomfortable and that is what you are feeling. It takes a bit to get used to them.
Hi Acctg55!
I had a bilateral mastectomy to expanders back in October of 25. This was followed by four rounds of chemo, reconstruction and now endocrine therapy.
After the mastectomy, the pain is wild. There were nights when the nerve pain and phantom pain were almost tortuous. I, like you, stayed away from the narcotics and made do with tylenol and ibuprofen as well. It took the better part of a month for me to be able to feel like the pain was under control, the drains removed and I was back to feeling more like myself again.
Fast forward to March 18th, I finally had my reconstruction to implants. This surgery was WAY easier. I was in so little pain that I had to remind myself to take it easy and not over do it. It was night and day different.
Now, just over 6 weeks out from that surgery, I am feeling pretty good, working on regaining upper body strength and focusing on mobility. All of these surgeries take it out of you, even as a "young" 42 year old.
So it will absolutely get better! Even if you are stuck in the "this is taking forever" phase 🙂
Hope that helps!
First off... If you had bilateral how is it that you still have cancer cells in the breast area... or is it closer to the back or underarm? If they know where it is why not surgically remove it ? Your body has had a lot going on and more chemo won't probably make the recovery any easier. You also run the risk of more side effects from another chemo. As a patient, ask more questions about that and consider the risks/side effects of any route. How long has this newer chemo been used and what is it's track record for effectiveness and side effects are all good questions to get answers to help you. Typically recovery from the surgical aspect of bilateral goes smoothly unless you have scar tissue development issues. Like another gal was saying... I felt so good I had to remind myself I was still recovering from a "surgery" and you do need to be gentle on your body, listen to the signals it gives you, be patient, and try to watch for cues on healing and focus on still loving what you do have! The emotional healing can take longer than the physical. Making a list of things you would like to do or try in the future. Even before you are ready to try any of them, it's ok to think about, consider, plan etc. If you have a great friend that might want to join you if any are things you can do or try with a friend... makes a great avenue to "get back in the swing" and lets your fiends know you are ready for more socializing. It helps you rebuild your public confidence and cues your friends/family with your level of activity and desire to "get back in the swing of things." Asking other survivors is a great way to get input and ideas! Good luck and keep in touch!
I’ve completed 13 of 14 Kadcyla treatments. They have been much easier on me than chemo. When I started treatments, I was given Zofran to prevent nausea but I discovered it was the cause of uncomfortable constipation so we stopped the Zofran after the first four or five treatments. The rest have been quite easy on me. I’ve experienced no nausea as long as I’ve had food in my stomach before or while receiving treatments. I’ve even brought Greek yogurt with me to my last two treatments to eat while receiving my infusions. The only side effect I’ve had from Kadcyla is neuropathy in my feet. My oncologist has told me this will go away once I complete my infusions. I’ve taken Gabapentin at night when it is at its worst about a week after an infusion and have managed it with exercise and by wearing toeless bamboo foot and ankle compression sleeves at night and during the day when needed. They are soft and comforting like a gentle massage. The duration of the 14 Kadcyla treatments will feel like a slog, but you will get through it while you continue to heal from your surgery and the Kadcyla fights any random remaining cancer cells you may have. You’ll start to feel yourself regaining, rebuilding and strengthening through the treatment cycle. Good luck!
@lwilliams816 No expanders for me, at this point no reconstruction for me. Glad to hear your second surgery was so much better!
@buttercup To clarify, there was residual cancer left in my right breast when they removed it, so the chemo did not kill 100% of the cancer, hence they recommend me doing more treatment with the Kadcyla, which I've been told has been very successful in the clinical trials and to help prevent cancer from coming back. Appreciate the suggestions, I have a great support team of family and friends, so yes once I start feeling better I plan on venturing out! 🙂
@janetb Thank you so much, makes me feel better! And you reminded me about the Zofran, I never took that the first round because I had bad constipation from the anti-nausea they gave me before the chemo started, so I stayed away from Zofran. Now, they do want to give me that first before they start the Kadclya, but I may tell them no then, and see how it goes. I'm traumatized by the terrible constipation from the chemo, so definitely don't want to go through that again if I can help it! CONGRATS on being at the end of the treatment, and thank you for letting me know what has worked for you!