Stage 2 Sisters Club
Comments
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Inna- have you considered getting a second opinion? What a confusing response for you to deal with from your radiation oncologist
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Wow. What a confusing way to explain something!
Check with your breast surgeon too. My doctors (MO, surgeon, and rad onco) consult with each other, and yours may offer a good office for a second opinion as well.
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Thanks, everyone! All my doctors talk to each other, but they believe in patient's participation in the treatment discussions. She did say in my place she would've done it, because the benefits in my case outweigh the risks. That said, she underscored that her recommendation is based on statistics only. I am pre-menopausal, had 1 positive lymph node and lymphovascular invasion. She thinks these are the reasons for radiation. However, I had a BMX and my tumor was close to my nipple on a very large breast, so,far from the chest wall. The affected lymph node only had .7 mm met, all inside. These last 3 thing seem to be saying that radiation might not be needed, but still should be considered. She did encourage me to get a second opinion, so I will do just that.
Are there any gals on the forum that had BMX and rads? Any particular side effects I should know about? How did the rads affect reconstruction?
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innab- yes, I had rads for those same three reasons, after umx. I also was told to get a second opinion and went to Dana Farber. They also recommended rads or else ALND. Considerations- with no breast tissue left, your lungs are in the radiation field. If they do your supraclavical nodes near your collarbone, it can damage your thyroid. I ended up with lung damage, but that’s like a 1% chance. It took months of being on high dose steroids to heal and weeks to get a Correct diagnosis. I’m okay now. I have not started reconstruction yet, but my skin looks good and my PS is confident it will hold up. The muscle continues to be tight and I’ve needed PT to regain range of motion. Knowing all this, I would still do rads.
Best of luck whatever you decide!
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Inna-- I had a BMX on January 29th. I completed 6 rounds of tchp approximately 10 days ago. I'm meeting with my radiation oncologist in approximately 30 minutes. Hopefully she will set up a schedule for my radiation. I did have one positive lymph node. I was very disappointed when I realized radiation was strongly recommended.
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Hi ladies, I am now 2 rounds into radiation. Following my mastectomy on 1/26, the SLN was positive, and the treatment plan we reviewed after that consisted of chemo, radiation, and ultimately hormone therapy. I had an immediate recon at the time of the surgery with an implant. The surgeon described the need to do chemo as essential, in order to seek out any isolated cells that may have migrated and to help treat the lymph nodes as I did not have any other nodes removed. Agree with all here, chemo sucks but it eventually is done and one starts to feel better.
When I met wtih the rads teams (in two places as I did not relish daily trips into the city and elected to do treatment as a satellite center), both teams agreed rads were the next step. I had a skin-sparing mastectomy minus the nipple, and the margins to the skin were very close. My RO said that rads would decrease the odds of a recurrence from 30% to 10%, and that sounded reasonable to me. I also had a swollen lymph node that showed up on the first rads CT mapping, and had to have that removed - it had a micro (0.04) but no extension. Second CT was clear.
The decisions we all have to make are so very personal, and factors like our age, menopausal status, etc., weigh in. For me the biggest choices were to have immediate recon, knowing the risk posed by radiation on an implant but still opting for one less surgery if possible, and then type of chemo - I was given options of AC + T or TC, and given a family history of heart disease and my own hypertension/heart murmur, I went with TC for a little less cardiotoxicity. Rads is also not a snap decision, but again for my particular situation the odds there helped make that choice. At my age (55) I wanted to hit this with everything possible, and so that will include the potential SEs of the 10 years of hormone therapy which will follow.
We can't know ultimately what the results will be, but in my case very candid team discussions, notebooks full of questions to be answered, and a lot of independent research, helped. The key is to make a decision that each of us is comfortable with, and that can differ.
Hoping everyone has a wonderful day.
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Thank you, guys! I guess, I'll do the rads. Can't worry about something that might or might not happen in the future. when BC has already happened and needs to be squashed.
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I met with my radiation oncologist yesterday morning. She told me my case had been reviewed at the breast conference. My surgeon, my Mo and this radiation oncologist all recommend radiation to the chest wall area. They had removed a large node sample and only one was positive in January so they all felt I did not need radiation to the node area. Next Tuesday I have a CAT scan scheduled and mapping. I'll start radiation as soon as they receive the results from the CAT scan. Initially I was under the impression that I had to wait 8 weeks post chemo but my oncologist said no they want to start next week if possible. Let's get the show on the road I'm ready to begin. Initially I was looking forward to having it ain't week reprieve other than the herceptin in the forehead to but I'm very excited about starting radiation early and finishing sooner than expected. They recommended five weeks low dosage. Thanks for all your feedback. And good luck to all of you today.
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Rads people, are you getting 3D or IMRT treatments? My doctor says I am a good candidate for 3D radiation. I can also enroll into Protone clinical trial, for which I have 50% chance of being selected. I do want to be selected, although it would mean teaveling 1 hour for this.
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Inna- I had a BMX and rads also. One positive lymph node before preadjuvent chemo, then skin/nipple sparring BMX. My doctors were on the fence with rads as well, especially since the node was cancer free at surgery. They discussed it at length at the tumor board. Ultimately, I decided I wanted the extra protection. My tumor was large and one side only had .1mm margin. My skin broke down during Radiation and I needed pt for range of motion issues and tightness but I would do it again for the potential reduction of recurrence.0
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Inna- I have no idea what type of radiation I'm going to receive. The only thing I know is that it's going to be low dosage. When I see my radiation oncologist next Tuesday I'm going to ask her to be more specific regarding the type of radiation. It was something that didn't even cross my mind. 3D and IMRT ? It's time that I become more proactive with my pending radiation. Thanks
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Hi all: I've been sort of MIA from this thread for a while, trying to get caught up...I did want to weigh in on the port issue. I did not have a port with four rounds of TC. I did ask MO about it and his response was that for four rounds I didn't need a port. I have never regretted going with his recommendation. I honestly don't remember lots of needle sticks before/during chemo...my MO does do blood tests, so there must have been some, but the place they stuck for that were not the same location as the infusion, IIRC. Anyway, it wasn't an issue. I have also had two unrelated surgeries since then (for knee replacements) and all sticks for those were in my 'good arm', with no issues. (during those surgeries they actually marked the lx side with a 'do not stick' band).
Best wishes to all;
Octogirl
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You're on the line as far as the guidelines. Did anyone talk to you about how radiation could change the skin and affect the expanders? I didn't want to do the radiation at first, but the size/location near the chest wall/3 cancerous nodes pretty much tipped the scales. Also, I didn't have expanders.
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MexicoHeather, oh, yes, they told me all about how rads can potentially impact my reconstruction. But I have an excellent PS. He is a head of PS at Memorial Sloan Kettering and is a bit gruff, but everyone say he is a magician. Even my expanders look like regular breasts. He said I am not the first one, who goes through rads before the exchange, he will make sure I look good 6 month after radiation.
I have to say, vanity is not my concern with rads. It’s the other potential long term side effects that I worry about. But I guess, I have no choice and will have to proceed with them.
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Anyone else’s husband become distant during treatment? I had a BMX almost 5 weeks ago and he’s at the point where he doesn’t touch me and if I didn’t go up to him I’d never get a kiss. He was a very touchy feely guy prior to surgery and was constantly going for the boobs, so I don’t know if this just how he’s is processing and getting through this so he’s not tempted to touch me while things are not so nice looking/feeling. We have been intimate a few times since surgery but I can tell he wasn’t that into it. I even cried because i felt bad for him because his wife is broken. if i try to talk to him he will just shrug or say nothing is wrong. I’m hoping after me exchange surgey things will get back to normal but it’s going to be a long 2ish months.
Thank you for letting me get this out ladies.
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SLL, I'm so sorry you're going through this. Here is my take. Cancer is dreadful and so hard for us, the patients, to process; but it's also hard for spouses and/or those who care about us as well. Many feel they have to act 'strong' for us, but are actually confused and scared and frustrated that there is nothing they can do to make it better. Does your DH have a friend or family member he could talk to? My DH talked to his sister a lot and a good friend, whose wife had been through some serious medical issues, hung out with him a lot more than usual. I was happy because I couldn't handle being his emotional support along with just getting through everything myself.
If you have already been intimate, you have been doing WAY better than me, and I dare say almost everyone, at this point of your recovery!!! Don't push it; if you're up to it, maybe be a little flirty, give him an unexpected kiss or touch.You are not broken, you are being forged into something much stronger!
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sll- oh honey, just give it a little time. 5 weeks is still healing! My husband was afraid of hurting me, not wanting to seem pushy, wanting me to heal, etc. Yes, I had to make the first move probably for the first 3 months. And my husband is also a “boob guy” and I haven’t even started recon. But our intimacy is back to normal. You are Both still adjusting to the changes. Don’t give up hope
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thanks ladies. My body has been through a lot in the last two years....pregnancy, birth, breastfeeding (up until last august), and now this! I’ll continue to let him know I’m ok and it’s ok for you to touch me too. There’s boobs you’ll be able to touch coming just be patient!
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SLL, has he seen any before and after pictures of breast reconstruction? If not, you might look on some sites and show him. It might help him realize that you are going to be whole again.
I am 4 months out from my BMX and DIEP reconstruction. Before all of this I had very sensitive breasts. Now my husband boasts that he has unfettered access to my breasts! But they are larger than what I had before and as I prepare for stage 2 in July, I am excited about how beautiful they are and will be!
You will be put back together again
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I hear ya sll! My youngest was one and I had stopped breastfeeding about 8 months prior to diagnosis. Very similar timeline to yours. My husband has seen a lot of boob situations in the few years we’ve been married!
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Hi sisters, hope all of you are ok.
I want to ask you about ki-67 percentages, really I think too much about mine. according to the pathology report after mastectomy, it was 70%, I read if its more than 20% that's mean it's high and aggressive. now I removed all right breast with 25 lymph nodes. it was grade 3, is that mean the recurrence is high due to ki67 & grade 3 result?
did anyone has high ki67 ? I start chemo first then surgery.
it's good or bad sign if you have high er, pr + receptors? because I still don't know about er pr percentages .
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Hi Hope, I wouldn’t put too much thought into ki-67 %. It can be variable and some labs don’t even test it any more because it can be so subjective. However, grade 3 does mean your cancer is on the aggressive side, but chemo works best on those kinds of cells. The higher your ER %, the more benefit you get from the antihormonal meds. Can I ask why you had so many nodes removed?0
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Hi peregrinela, that's why I'm afraid, grade 3 means it's too much aggresive so the recurrence rate will increase. do you know patient who be NED for a long time with high grade cancer cells?
I already did 6 cycles chemo due to nodes involve then surgery.
I'm living at middle east, the system in their hospital is that how to protect the patient and reduce the chance of recuurence by remove a lot of lymph nodes and check where the cancer spread and check the vasculars to choose best treatment. they said we can handle the lymphedema but we can't handle secondary cancer. I don't like that but this is my only choice .
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Mine was grade 3 and I am over 10 years out. Chemo works THE BEST on grade 3 cells....so if you do chemo that is actually a good thing.
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Hope 99: I hope you will continue to check in here, since you are out of the US. Different oncologists do different things. The Grade 3 is good information to know for the chemo treatment. How old are you?
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I did chemo ruthbru.
I'm 49 dear
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did anyone get skin discoloration on their face from the AC treatments? I'm going to try and post a picture. This is with no make up on and it's bilateral
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Yes. I had a butterfly rash and it was even deeper in color. Eventually it calmed down. I think it has to do with the immune system.
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thank you.
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for those who have gotten dose dense ac and taxol, did the taxol make you feel as sick and as drained as the ac?
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