Starting chemo February 2020
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Hray- pathology typically takes a few days. Mine took about 10 because I had a weird case. They called with the results.
Scattered- ugh, I’m sorry you keep getting delayed! I just don’t quite understand covid...glad you’re doing okay overall though with it.
Dysonsphere- I just finished rads last week. 33 rounds total. I can try to answer any questions you have! Yay for getting your last drain out! It really does make a difference when they’re finally all out.
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i started an August Radiation group
https://community.breastcancer.org/forum/70/topics...
So far it's just me and one other person
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at what point are we considered cancer free/In remission? Once they call and tell us they got all the cancer from surgery?
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when I met with the RO to talk about radiation and why he wanted me to do it. He said this isn't about cancer that's all gone...
I think you're considered from the point of surgery (provided they got everything)
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awesome that’s what I was thinking I just wanted to be sure
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if you do radiation once can you do it again in the same place? Like radiation on the left breast now then if the cancer came back could you do radiation again on the left breast? Or can you only do it once per area
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hray, I remember my MO saying that they can only do radiation in an area once.
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thank you so much! I was worried about that
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Radiation is only once in the same location. That's one of the many reasons I have not decided yet if I want it. I'll wait until the pathology report is back.
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ajminn3, I guess my biggest concern is what side effects you might have experienced, if any. I have heard it's painless when you have it. I will be having it on my right breast and right axilla area.
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You know I specifically asked that question and my MO said it can be done again. Which I found odd because everything I read said that can't do radiation twice
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I'm considering not doing it if the pathology report comes back goo. They only had to take one lymph node out. It was the only one that the blue dye affected and it just so happens to be the same lymph node they biopsied when I got diagnosed and it came back negative for cancer. So if there's no cancer in the lymph nodes and they got all the tumor at surgery I'm wondering why I need to do radiation.
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SE - I’m so sorry, I can’t believe you are still positive! Do you still have mild symptoms?
Dysonsphere - it’s so amazing to get the drains out. I had 4 weeks with a drain in me, and I was about to lose it near the end. I haven’t started radiation yet, just met me RO yesterday. She said she likes to start 4-6 weeks after surgery, and I’ll be about 6 weeks by the time we start. I’m supposed to go next week to do the planning.
Mmorigan- my onc seemed to think Kadcyla still has some side effects for most women and she doesn’t want radiation on top of that. It seems like you are doing well with it and I feel like I would be fine too.
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Hray, two things - my R.O. said that the purpose of radiation is to kill any stray cells that could be in the area trying to escape and metastasize in another organ. It's part of the prevention plan.
And she also said that they do not use the word Remission until you are five years out and everything has been clear.
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"Morrigan- my onc seemed to think Kadcyla still has some side effects for most women and she doesn't want radiation on top of that. It seems like you are doing well with it and I feel like I would be fine too."
I saw on Facebook that the Rads + Kadcyla seems to add to the fatigue issue.
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those are good things to know! It definitely makes me reconsider doing it. No one has ever said that it’s part of prevention. That makes sense. We are considered cancer free though after surgery if pathology comes back good right
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After my surgery (1/6) I was considered cancer free Per clear margins and clear PET/CT scan in late January, but due to the type of cancer (triple positive) and it being found in 1/3 sentinel nodes, the recommendation was chemo, rads, and hormone treatment. I went with it all because the benefits outweighed the side effects (so far) for me and being 34 with 3 kids under 6, I never wanted to look back and wonder “what if” if I had a reoccurrence.
In terms of rads, I experienced very red, sensitive, and painful skin on my chest, arm pit, and “underboob” area...I had no side effects until 3 weeks in, then my skin became raw quickly. I am now 1 week out and my skin is peeling, but feels much better. I had some minor fatigue, but it’s hard to tell if it was from rads or multiple camping trips and summer fun with 3 wild boys...I’m happy to be done with rads (going everyday got annoying) and am tolerating hormone therapy so far (1 week in).
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ajminn3 - thanks for sharing your experience. I’m so happy that you finished active treatment. I’m not looking forward to daily trips to the hospital. How many radiation did you do? I think my RO said I’ll do 28. Did you have to do the “hold breath” method? She described that as a possibility to protect my heart. I was also told it takes a few weeks to feel the affects of the rads and then they keep going about 2-3 weeks after you are finished.
Hhray - my radiation is because I had positive lymph nodes and also because my tumor got up to the chest wall/skin. My radiation oncologist said that cancer likes to hide in skin, so I’m expecting mine to be pretty crispy when I’m finished with radiation. Each case is different, so it really depends on your cancer and your doctors recom
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I had 33 rounds total. 28 rounds of whole breast/supra-clavicle/auxiliary area and 5 rounds of boosts to my mastectomy scar line, which was the area of the closest margin. During my 28 rounds they did what was called a bolus every other day, which was a wet towel placed on my chest. I guess it brings the radiation closer to the skin. I did do the breath hold method. I didn’t mind it. They had me do both during my planning session and then reviewed the images to determine if my heart and lungs moved away enough for there to be a benefit and they did. I really never had to hold it for more than 20 seconds. So far my implant has held up with no real change and I’m hoping it stays that way
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I just had surgery on 7/17 and I will probably start radiation week after next. It seems so early to me since I don't feel like my grafts and sutures are healed enough. I'm still draining serous fluid from one breast and my axilla area is still very swollen and numb . But my plastic surgeon said I was good to go!
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ajminn3 - thanks for the info, sounds very similar to what my RO described, except I don't think she mentioned the boosts. I'm glad you went through it without too much trouble and your implant seems ok. I have pretty sensitive skin, so I'm a little worried about how I'll react, but I guess I'll hope for the best.
dysonsphere - my RO said 4-6 weeks post surgery. And you have to have a planning meeting etc, so you'll probably be on schedule. I would say that I've heard alot of people struggle with arm placement during radiation after surgery, since you are still so tight from the surgery. My RO checked me and said I was doing pretty well, but even still, I'm having some OT sessions and was given more vigorous stretch/exercises to do twice a day to keep my shoulder and chest loosening. I would probably start radiation sooner, but I think my RO is going on vacation the week after next, so I'll have to wait one extra week. Next week I'll do the planning, but won't start right away. Right now I'm waiting for insurance approval to schedule the planning meeting.
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Are your expanders getting filled periodically prior to starting radiation? I'm curious about that process - how do you know when you're done/as "pumped up" as you want to be? I plan to go a little smaller - I'm a 38D now - was maybe DD before losing weight during chemo, thinking I'll want to go no larger than a C. But will I not look "right" to myself when I'm not my natural size?
I haven't met with a RO yet, but my MO and BS both think radiation is a good idea because 1) local recurrence is apparently pretty nasty - can be outside on the skin (at least with a mastectomy) 2) it usually decreases the chance of recurrence enough to be worth the trouble. But BS said to wait and see what actual statistics they give me for chance of recurrence with radiation vs. no radiation before I decide. She also thinks its unlikely (given my age) that radiation will mess up my skin badly enough to cause me to have to do the flap vs. implant.
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They fill you up either weekly or bi-weekly depending on the doctor. They go until you fill up the expander or get to the size you want or your skin gets tight.
I filled up to 540cc in a 475cc TE. However, my cancer boob looks smaller than my non cancer boob (I think it's how it sits). Radiation can tighten the skin on the boob making it "shrink". So it's possible my cancer boob will be even smaller after radiation.
I have to see my PS post radiation so he can see my skin and make plans. I will ask him about options (fat grafting, extra fill, bigger implant, nip/tuck).
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I had one fill in my expander and decided that was enough for me. I was a large C, now I think B. I wanted to be sure I had something, but I love being smaller. And I had to go smaller if I wanted Diep flap. I was told I had to be done with fills before startin radiation.
Radiation was definite for me because of nodes and also because my tumor had caused changes in my skin. Radiation oncologist said cancer likes to hide in skin. I’m not looking forward to it, but it’s just another step to reduce recurrence
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SE - how you feeling? Do you go back for another Covid test soon?
Anyone have anything much going on this week? I’m still waiting to hear from radiation on my planning appt. I followed up last week and they said I’d hear Friday, they were waiting on insurance. But nothing. Also have an OT appt for lymphedema prevention.
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This is the first time in a long time I don’t have much going on (cancer wise) and I am thrilled! I started ovarian suppression shots (Zoladex) and my estrogen blocker (Exemestane), but so far beyond some achy joints I’m doing okay with it. My skin is also healing from radiation so it’s not so tender anymore and the redness has faded significantly. My school district voted on Friday to start the year with a hybrid model (students split every other day with everyone distance learning Fridays), so I’ll be starting to get prepped for the school year ahead. Hope everyone had a good weekend!
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Fab4mom, I'm currently on hold for more than hour trying to sched. my Covid test for tomorrow or Wednesday.
This weekend we went kayaking with my 13 yr. old and it was nice being out there by the empty beaches. I'm finally feeling like myself again except with muscle aches from the Tamoxifen.
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SE - Wow, that looks like a beautiful day out on the water. I'm jealous 😁. Good luck with your Zcovid test. Hopefully it's negative
Ajminn - i look forward to being on the other side of radiation. The daily trips are going to get annoying fast. 😁
Starting Radiation today. It's a late appointment because I have to meet with the RO. I asked for earliest possible appointment going forward, want to get it over and done with.
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SE- that looks wonderful! How fun! Hopefully they get your covid test in and it’s negative so you can get that surgery done.
Morrigan- yep, the daily trips get old real fast. I agree with you doing the appts right away if possible. Mine were mid afternoon, mostly due to my husbands work schedule/childcare and me having a flexible schedule being off in the summer as a teacher, but I hated that it interrupted my day. I’m thrilled to be done with it
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AJminn - how great to be slowing down with the cancer stuff. It’s also nice to hear how you are getting through it all without too much trouble. Hybrid teaching sounds so tricky. A few weeks ago, it was all doom and gloom here, so they pulled us back to fully remote. To be honest, now it seems like Covid is settling down again, and if not, the severity is settling down. I’m still conflicted, but keeping busy setting up 4 spaces in the house for my 4 kids to all work remotely. Also figuring out how to up our WiFi power.
Mmorigan- exciting you got radiation going. I’m always excited to get the next step moving along. I typically am an early bird for appts, I always want the earliest possible. Now that my kids school will be starting soon, I may have to ask for a late appt. I’m not sure their schedule, but I imagine my littler ones will need me monitoring their zoom logins, and just generally making sure they stay on task. Plus lunch etc. So, I might need to ask for a later day. The hospital is 20 minute away, so it’ll be more than an hour a day I’ll be gone.
SE - enjoy the time you feel good! Waiting is so hard, but how great to soak up the sun and fun with your son. Hopefully you get your test in and get the stupid surgery over with soon.
I’m still waiting on the radiation department. The RO told me I’d have a planning appt this Thursday, and they would call. I followed up last week and the office confirmed I was pending insurance and to expect a call Friday. No call Friday or Monday, and I got a note from my insurance nurse navigator that she submitted my paperwork for radiation. So today I’ll hunt down radiation again. I’ve had a lot of good experiences with scheduling and all that since diagnosis, so this radiation department has me frustrated. It’s been 5 weeks since DMX and 4 weeks since nodes. Doctor said she wants to start 4-6 weeks after surgery . I’m ready and feeling healed. Let’s get this going. I can’t help but wonder with each delay if I’m not letting some micro cancer cells get to spreading again. Like I had 6 weeks after chemo to surgery. And my scans looked clear at the end of chemo, but I had cancer at surgery. And my cancer cells show that they are highly aggressive. So let’s get this show on the road!
In other news, my kids have been attending Camp Kesem this week. It’s a camp for kids who have parents affected by cancer. Local chapters are hosted by universities, but it’s a nationwide organization. I applied and my kids were approved in February. Normally it’s a sleep away camp, this year it got switched tovirtual. It’s totally free and they have been having a lot of fun with the online zooms and stuff. It made them super excited for next year. If you have kids in the 7-17 range, I encourage you to check for a local chapter.
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