IBC lounge: roll call, support and just a good place to hang out
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Thanks, Maggie!
SBE--yep, I was pretty psyched! I'll take any good news I can get these days.As for the drains, both of mine have popped the stitches where they go into my side. My husband put some tape on them to help keep them in place, and my surgical bra helps a bit. I hope they will stay in place until I see the surgeon on Friday.
Blue--I'll be so glad when the drains are gone and I no longer have the "bag of golf balls" feeling in my armpit!!
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Hey Girls - I have a question - I am about to have mastectomy on Sept 21 after 16 infusions of chemo. I have done well with it, and my blood work is great! I had 1 visit with a radiation oncologist who told me that I am NOT a candidate for reconstruction due to the IBC nature of the skin that will need to have 30 radiation treatments. I see that most of you have had reconstruction. I am about to be 72 and felt like that wasn't necessary for me and I didn't want additional surgeries. Were you told that you were not a good candidate for reconstruction because of radiation treatments needed after mastectomy?
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I was already determined to not have any reconstruction when I first spoke to the surgeon, so there was never a need for the radiation oncologist to convince me. I'd been aware of IBC for years (after having read Dr Susan Love's book) so I knew before the official diagnosis that this is what I probably had. I read up on the current standard treatments and so knew that radiation was all but inevitable. I declined to have any lymph nodes removed, so the RO ordered extra radiation treatments (37 total) to compensate. Since I was 57 and not in any hurry to have additional surgeries, it wasn't all that hard of a decision for me, and though I wish I hadn't had to lose my breasts, I have no regrets about declining any reconstruction.
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Thanks so much for your reply! I won't be having all my lymph nodes removed...just a few. My surgeon is going to do something she calls 'lymph mapping' (putting a substance in my breast and watching to which lymph nodes it drains...she will remove those only. I am ok with no reconstruction. I just want the cancer GONE! I see you also had bilateral mastectomy - that's what I will have on the 21st.
How was your recovery?
I appreciate all your messages and support.
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Hi cynmaggie, glad to be of help.
The only part of surgery recovery that really bothered me was (1) the drains and (2) not being able to sleep on my side.
The drains were in longer than I hoped, but I shouldn't complain as they did their job, it was my body that wasn't cooperating. I was given a post-surgical camisole with pockets to hold the drain bulbs, so they weren't too much of a nuisance and I only had to be careful when stripping the lines. A little tug would be very uncomfortable. Not being able to shower until both drains were out was awful. Wipes kept me clean, but I really missed showers.
As for sleeping, learning to sleep on my back was a challenge. I had a wedge pillow that was recommended to keep my upper body elevated rather than flat. It was pure joy when both drains were out and I could again sleep flat, on my side.
Another recommendation that I found helpful was silk-like pajamas to make it easier to slide in and out of bed. I was surprised how difficult it could be to get in and out of bed at first without overusing my arms. I wish I had practiced that before surgery. We didn't have a reclining chair that I could sleep in, but I can certainly understand why one is often recommended.
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Thanks Shycat! I did purchase a silk night shirt! Thankfully, my husband bought an adjustable (split) bed when he had shoulder surgery a few years ago... I will be using the raise the head feature! My current difficulty - is swelling of my feet, hands and face - just finished chemo Aug 17 and figure its still side effects from this. Taking Lasix, drinking lots of water and propping my feet up when I can.
I appreciate your feed-back!
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I knew I wanted recon. I didn’t want to go flat and I didn’t want to carry around hot, heavy bags of silicone either. My RO specifically said I wouldn’t be a candidate for the tissue expander/implant type because of the radiation effects on the skin, and asked that I wait for at least 6 months after rads before I even considered recon. My DIEP flap surgery went well and I’m pleased with the result. I was 58 at the time.
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Thank you! I didn't realize that recon was possible later if I choose. I am so happy for you! Thanks for responding
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Cynmaggie, google “delayed DIEP.” Flap procedures that create “breasts” from skin and fat obtained from other parts of the body (belly, thigh, other places) are usually very successful for those of us who have had extensive rads. It’s a lengthy surgery and recovery and frequently requires at least one revision surgery to fine-tune the results, but it’s a good option. I had delayed DIEP on the cancer side and immediate DIEP on the other side, since I knew I wanted double mastectomies. It can be done even years after the original mastectomy.
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Hi everyone I am here after a long time. I have been going through a lot of anxiety and depression. Last month my dearest uncle who is 87 got diagnosed with esophageal cancer. I hate this disease .
Hope everyone is doing well.
Love
Flora
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Mara you look beautiful in your displ
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Hi Flo!
It is good to hear from you. I am really sorry to hear about your uncle as well as the anxiety and depression. Are you seeing anyone to talk about it? Have you found anything that helps?
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Hi Flo. So sorry to hear about your uncle and your own depression. I have my moments of despair but I guess that goes with the cancer territory. Take care of yourself.
Hey Blue. Hope all is well with you. I'm a little over 3 weeks out from my single mastectomy and trying to deal with the SEs. I have an appointment with my RO next week and I dread the thought of radiation, especially since I'm still hurting from surgery. Ugh.
Hope everyone is doing well.
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Flora, I am so sorry to hear about your uncle, my condolences to you and your family and his friends as well. It is good to see you.
Thank you as well for the compliment, I appreciate it.
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Hi Blue22 thank you so much. I just started to have counselling sessions with a psychologist. Hoping for some burden to get over my head. Past few years have been so hard
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Thank you Mara
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Thank you LW422
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My IBC trimodal treatment will shift to radiation soon; I have an appointment with the RO on Thursday. I am dreading rads SO MUCH. I know that the IBC radiation is more stringent than typical treatment and I'm hoping I won't be too miserable. Of course chemo and surgery were both miserable so I expect the worst from radiation!
Is anyone here on Xeloda? I have an appointment with my MO tomorrow for followup and I'm terrified that he's going to recommend that I try it. I've been treated as TN even though my cancer was PR+, and I believe that Xeloda is the latest addition to treatment plans. I don't know anything about it really... or who they recommend it for.
Flo80--I've been thinking of you and hoping you are finding some comfort. Have you started counseling yet?
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I have a tip to look after your skin on the breast wall during radiation. When I did the radiation I had two strategies to keep the skin from getting damaged. In the day when I was able to put it on, used Glaxal base moisturizer which is approved. Every night after treatment, I coated the underarm and chest with Vaseline. You have to be careful if you do that, make sure it is completely washed off before radiation. I found that doing this prevented any skin breakdown. I did not notice any issue until a week later with a slight sunburn look under my armpit. If you can keep your skin together, makes it much easier to put up with the rads.
Again, I must heavily stress, doctors will not approve of the Vaseline so I never mentioned it and made sure it was thoroughly washed off in the bath before my appointments but I will say the glaxal in the day and the vaseline overnight does help heal the skin overnight. Up to you, that's what worked for me.
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When I had radiation treatment seven years ago they were trialing a product called Mepitel, a plastic film that stays on the rad zone for the duration. I had 33 doses and minimal burning. You could ask if this is available at your center.
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Thanks, Mara. I have seen a lot of people recommending Aquaphor which I believe is thick and greasy similar to Vaseline (but I have no experience with it.) I have to wonder about scrubbing the Vaseline off in the bath... didn't that hurt the radiated skin? I appreciate the tip. I can't believe how scared I am of radiation.
TravelText--I read your posts about the Mepitel a while ago and will ask my RO about it on Thursday when I meet with her. I guess my only concern is the size of the radiation area. As I understand it the Standard of Care for IBC includes radiating the supraclavical lymph nodes, chest wall, and axilla, so isn't that quite a large area to place the film? Thanks for the suggestion.
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LW422. No, I had all that zone radiated. The film comes in sheets and can be replaced if it comes loose. Meant to be showerproof, but wasn't quite. Rads are the easiest part of treatment for many, and hopefully you too. Keep us posted.
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LW422, I used a washcloth and washed it off, sorry to say scrubbed, makes it sound like being rough on your skin and I was not rough when cleaning it. I have heard of good results with Aquaphor and that is approved, so may be a better thing to use than Vaseline, your treatment, your decision of course. Keep us posted on how you are holding up. I had 25 treatments over 5 weeks, Mon to Fri. Whatever choice you make or is recommended, keep looking after the skin for a couple of weeks after as radiation can have an effect for about a couple of weeks after you finish.
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Thanks again, Mara and TT. I really appreciate hearing from those who have gone through this; your tips mean so much.
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Hang in there LW422! You summited 2 huge mountains already, 1 to go. I spoke to 2 radiologists & they both think radiation will be well tolerated when compared to chemo……. Hope they are right. I consulted proton therapy & concluded that regular radiation will be best, even for left side. Traveltext, I asked about mepitel, he said I can buy it from Amazon….. wish they provided this. Sounds promising! I am feeling very good now that chemo is done, massive weight off my shoulders, anxiously awaiting my surgery & radiation. I can *almost* see the end! Still doing keytruda every 3 weeks until the one year mark from the start. I’ll be very relieved once the surgery is behind me. Strange no micro surgeons to do lymphatic bypasses up here & also not covered by insurance. We are behind the game! I will fly to Tx or SF if needed later to get the bypass. Fingers crossed that I won’t need it!
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Hey Mamacure! Congrats on finishing chemo; I know how exciting that is! Do you know when your surgery will be? My surgery was a little tougher than I anticipated, I guess because of all the lymph nodes she removed (32!!) I sure hope that lymphovenous bypass I had will do its job!!
I don't know why after chemo and surgery I am still so scared of radiation. I got notification that a "simulation" was added to my radiologist appointment on Thursday so that is really making it real. I hope I have sufficient ROM in my surgical side to hold my arm in the position for radiation.
I hope you are feeling well now that chemo's done. Take care and let me know about your surgery schedule.
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Don't scrub radiated skin! I'm pretty sure scrubbing the Sharpie marker ink off my skin led to the huge radiation dermatitis wound that I doctored for months. Radiated skin is very fragile and heals very, very slowly.
Mineral oil or baby oil, gently applied and gently wiped, will remove marker ink from radiated skin. If you use soap and water don't rub or use a rough cloth.
My radiation center recommended Aquaphor lotion and had big baskets of sample-size tubes for anyone to take. There are other lotions and ointments specifically made to treat radiated skin, so if yours starts looking angry and sore, ask your RO about it.
You may have friends who have experienced radiation treatment for DCIS or low-stage BC. Before my rads, some well-meaning people told me "it takes longer to take off your shirt than lie still for the treatment." Well, they were wrong. My daily treatments, thirty-eight of them, took about 20 minutes and (I counted them) 13 different positions of the gantry--the huge machine that delivers the beams. I found it distressing to just lie completely motionless and listen to the machine deliver death-rays without any distraction. Bring some AirPods and listen to music or a recorded book to pass the time.
Get a calendar and write the days of your treatments, then mark them off each day. This helped me hold on to the knowledge that this phase of treatment will end.
Good luck! SB
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It’s been awhile since I’ve posted. I’ve been reading everyone’s post (which I love to do), but haven’t had the energy to share my own stuff. Today I finished my last round of TCHP. I was saddened to read in my note that I had “a very poor response to treatment with very little change visible on scans”. My MO did tell me that she could tell a clinical difference and thought we should proceed to surgery as planned. I was told my surg onc might order more tests.
When I had the scans done, the radiologist seemed so upbeat. She said she saw none of the same areas of concern as they did with the original scans. She said my skin thickening was basically unchanged and I had lots of calcifications but that those were not expected to change with chemo. I guess I’m just sad because the MO did not read the images in the same positive light. Or maybe I misunderstood what the radiologist was saying because I was so hopeful for a good response.
It’s hard to stay positive. Even if it’s irrational, today I feel like the cancer is winning. I feel like I’ve let the chemo tear my body down for 3.5 months only to find out it didn’t do what it was intended to do. Thanks for listening and always being here to share your stories.
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Zakheat, I was in your shoes seven years ago. The best the chemo did, and this is important, was make the surgeon’s job easier because the skin was now in an operable condition. Then after surgery, I didn’t achieve pathological complete response, meaning the tumor was still active. However, after radiation the scans showed no evidence of disease. I have remained that way to date. Hang in there!
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