January 2018 Surgery group! Please see updated list in thread!
Comments
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Is anyone else getting radiation after their mastectomy? I was wondering if you have to wait until the incisions are totally healed to start? I am over 4 weeks post op and really want to get the radiation behind me but there's still some areas that are not healed and may be weeks away from healing.
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Maggie - I’m actually in Carlsbad, so even closer. We love San Clemente! Where are you now?
Krose53 - That is not fun! I got hospitalized during chemo too and it was awful. I hope you break out of there tomorrow!
Rebekah
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Dlpaquette- I found out today that I’ll need radiation . Had BMX on 2/8 and my RO said she won’t start me til about 2 months from my surgery. I have to get my TEs filled in that time too and ironically, then the side not being radiated gets deflated by 50% - has anyone had that?
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krose53-Thanks for the warning. How horrible for you. It isn't as if chemo isn't that enough now flu and a hospitalization. My thoughts are with you
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Thanks HopefulAC, I met with the RO and he had said 6 to 8 weeks but have not been able to talk to my PS about it as she is on vacation, I go next week to see her and was hoping we could get started soon. I am really wondering if they will even start if I am not totally healed, my last surgery took 18 weeks to close, I really hope that does not happen again. As for deflating the implant on the noncancerous side, the RO did mention that but did not say how much, he said it gets in the way of the of the radiation beam. He also wants the implant on the cancerous side to be inflated more because the radiation will cause that side side to need more fluid in it to match. In the long run. He said we can't change our for the implants for 6 months after radiation as it takes that long to settle things down.
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dlpaquette- what your RO said about 6 months before any exchange is Same thing mine said.
Im healing ok. I’m 2 weeks post op and still remarkably sore especially in side where they took 3 nodes.. can anyone give me timeline re how they did each week pain-wise and with range of motion? And also how much pain Meds folks were taki
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hopefulac- I didn't take any pain meds post-surgery. I just got very lucky. I'm 3 weeks post-op as of yesterday and I had 18 lymph nodes removed from my right side. As the numbness wears off I'm noticing increased tightness in right shoulder. I take a warm shower and do exercises in the shower. I have 90% AROM BUEs in all planes. Each person is different. And you shouldn't push yourself past the point of pain. If you have any doubts as to what you're allowed to do check with your Healthcare team. You have been through a lot. My WBC keeps dropping and this was before chemo. With cancer its always something.
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I got my post-op pathology report today and it was good, but not great. The good news, the lymph node removed was negative for cancer! They only took out one lymph node, if I understand correctly they only saw one (with the tracer I assume), and it looked goo during surgery so they didn't see a need to remove any more. The bad news is that when they re-tested they are saying it is grade 3 and not grade 2, the tumor is also a bit bigger (2.4 cm with 2cm being invasive, pre-surgery it was thought to be under 2cm). The frustrating part is that there was one focally positive margin. I had a mastectomy, so there is no more tissue they can remove. My surgeon said that focally positive could mean something as simple as a cut or crack in the sample from it being removed during surgery. My tumor was up near the skin with no skin involvement, however as there is no more tissue to remove, this now bring radiation into question. One reason I opted for mastectomy as opposed to lumpectomy was to avoid radiation. I'm happy about the lymph node, but a bit upset by the rest.
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jo6359- thanks for info:) yea I’m just gonna take it day by day
Toughcookie- I understand what you’re feeling. I found out yesterday that I should get radiation even after getting BMX & still processing it
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toughcookie-I had a BMX hoping to avoid rads. 1 positive lymph node changed everything. Now chemo and rads. Cancer has a mind of its own. My initial grade from my biopsy was grade 3. Post op it became grade 2. It does suck. You've been through a lot so hang in there
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ToughCookie, I have a similar situation, mastectomy (because multifocal cancer in two quadrants) and a positive margin. The case was considered somewhat borderline -- the surgeon believes she got all the cancer, but the "tumor board" (don't you love that?) voted for radiation just to be sure. Just finished my first week (of six). The worst thing so far is it's a little tiring (even if the RO and RO nurse said I shouldn't be feeling that this early) and a little impersonal, but really not so bad.
jo6359, thinking of you -- I said the same thing to one of my docs, when he asked me about my vegan diet, and I said I hoped it would protect my health: "cancer has a mind of its own."
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Hopefulac I was 4 weeks before I started feeling a lot better which was just Tuesday of this week. I decided to clean, Vacuum, wash floors etc this week and am paying for it now. I am anxious for the wounds to heal.
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Anybody else stay tamoxifen yet? I just started, wow the list of possible side effects is overwhelming. Hoping for just the minor ones. I was told I could choose when I started but decided to stay a few days before going back to work so I can see how I react to it. I also figure the sooner I starve the cancer the better:).
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Rebekah, this summer we were relocated to Indianapolis. I definitely prefer San Clemente, especially a few weeks ago when we had multiple days of -20* wind chills!!
Hopefulac, unlike Dlpaquette, I still haven't tried vacuuming or anything strenuous. I just saw my PS yesterday for a 3 week follow-up and he said no repetitive motions or lifting more than 5 lb. He did say I could finally stop wearing the surgical bra! What a relief to get that thing off.
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Jo3659, thanks for the comment.
Did you have reconstruction as well?Miranda2060, Did you have direct to implant or tissue expander? I fear if I need radiation that it might compromise my reconstruction. I currently have a tissue expander in, I opted out to try for direct to implant. I have been having some healing issues as it is (although minor), so I feel if I need radiation what might happen. No way I am loosing an implant. My mom never had reconstruction when diagnosed at 58, and that was hard enough on her. I'm 33.
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toughcookie-no recon for me. I made it extremely clear to my surgeon that I did not want Recon. I wanted flat. Imagine my surprise when I'm reading my path report that my doctor did nipple saving and skin saving mastectomy. I couldn't figure out why I had dog ears underneath my armpit. It is so annoying and painful having my arms rub against this excess skin. I will need to have another procedure later on to get rid of it. We go through so much with breast cancer the surgeries the chemo or radiation medications. It never seems to end. And my surgeon felt that he knew what was best for my body. I see him in two weeks and I'm going to address what he did to me. How unfair.
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ToughCookie, I had direct to implant. It was what was recommended by the surgeon and the plastic surgeon. I am VERY concerned about what the radiation is doing/will do to the implant. I raised the issue every time I spoke to the RO (least favorite member of my team), and he said something about "potential toxicity" to the implant, and that he would discuss it with the PS. I am thinking it's unavoidable that it will cause problems. I think I have to maintain perspective on that, because if the implant has to be replaced, it's not the worst thing in the world -- I just wonder why they recommended the implant when they knew radiation was a strong possibility.
The radiation techs are placing a wet towel (taped down in elaborate ways) to the reconstructed breast, maybe as a way of ameliorating damage. I feel a little like Gulliver.
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The damp towel makes sure that the skin above the implant or TE is being radiated as well. It's called a bolous, the techs told me why they do it but basically it lets the machine know to radiate the skin and or muscle since the implant or TE is separating the two areas.
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Thanks for explaining this, TWills. The techs probably explained it, but it's sometimes hard to retain all the info in the moment.
My parents lived in Clearwater, and have been there many, many times!
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Miranda2060,I definetly understand that! Ask your rad tech as well though, who knows if I understood mine correctly. Lol
We love it here, just moved here a few years ago from N Florida, it’s a lot different from there!
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There are some great, and affordable, restaurants in Clearwater (among other wonderful things).
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Jo3659. Yeah, that’s not cool at all. I don’t get how they can do a surgery that isn’t specifically specified on the conscent form. Mine specifically said nipple sparing mastectomy with expander and adm reconstruction. Short of complications, I didn’t think they could do anything differently.
Miranda2060, did they think before your surgery there was a high chance of needing radiation? I was told pre-op my odds of needing radiation were slim.
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I have added my surgery info to my profile but I just noticed it isn’t showing up under my posts. Strange.
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toughcookie-nipple sparing and skin saving masectomy was NEVER mentioned. I signed a lot of forms that day. Every single nurse would look at me and state "double mastectomy no reconstruction". I had one post-op visit with my surgeon. At that time I wasn't aware that he had done the nipple saving and skin saving. It was never mentioned in the visit. At that time I was still numb so I thought these packets of skin underneath my armpits where normal from the mastectomy .I found out through my pathology report.Even then it was a one liner. As the numbness started wearing away I couldn't figure out what these horrible things were underneath my armpits. I see my surgeon for one more visit next week and I am going to ask his office or the hospital for copies of all my consent forms. On the site flat and Fabulous this is a common problem. Many women have reported their surgeons have done nipple saving or skin saving masectomies without their knowledge. The concept is maybe when things calm down the woman will change her mind and everything will be in place for future recon. Even my chemo nurse told me this sort if thing happens a lot. She defended the surgeon stating a lot of women are overwhelmed with their cancer diagnosis and having to make a lot of difficult decisions. And she said there is a small percentage of women who say no to reconstruction and 2 years later they want reconstruction. Her theory is it's easier for the surgeon to do the nipple saving or skin saving mastectomy at the time of the double mastectomy to make it easier for future Recon.
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ToughCookie, that possibility was mentioned, due to the tumor being either against or invading the chest wall. There was a positive margin, and though the surgeon believes she got all of the cancer, the "tumor board" determined that radiation would be the most prudent option. I am into week two of six now, so far no major or intolerable SE's.
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Toughcookie - under your profile, check under Edit next to your surgery and make sure that make public is checked off.
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Hi Ladies, Hope everyone is doing as well as they can be. I met my RO yesterday and I'm going for 6 weeks of radiation. I have my CT on Friday to get things started. I'm considered being in a gray area for the radiation but my RO said they have found it more beneficial especially for people in my age group to have it done. My MO and my SO both said the same thing so radiation it is. My large aloe plant will finally be put to good use. If anyone else has any other things that have worked please let me know.
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Nancy, I don't know much about the radiation guidelines. Before surgery, my BS had said if I had the mastectomy, I wouldn't need radiation. After the initial path report, she said based on the 4.5mm invasive component that I was now in the gray area for chemo. Now that's it triple negative, I think it has to be to chemo, but we meet with the MO on Tuesday. Are you in the gray area due to the tumor size?
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Maggie, I am in the gray area because of size and location mostly. My tumor was 6cm when it was removed down from 9cm when I was diagnosed. The guideline recommends anything greater than 5cm should get radiation. Thankfully my nodes were clear and only one was removed. Chemo was never discussed because my onco score was 15 and I had great response to hormone therapy.
I hope you don't have to go through chemo but if it means a better chance it won't return then do it. We are all strong women and I'm sure you'll make a great comeback once it's over. Good luck on Tuesday.
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Nancy, thanks. Best wishes to you as you start the radiation process. I have my kidney surgery on Wednesday (the kidney surgeon is planning on a robotic partial nephrectomy) so I'll need 4-6 weeks recovery before starting whatever breast treatment is necessary.
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