Lumpectomy Lounge....let's talk!
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Linwentz,
I've been lurking on this and the DCIS forums for a while, and given our similar medical predicaments, I felt like I had to post.
I just had a re-excision for DCIS. The re-excision was even easier and faster than the LX. Did your BS tell you the extent of the positive margins or can you find them on your pathology report? I had two positive margins--one with focal points of DCIS (very trace amounts) and another with mild margins. Based on that information and discussions with my BS and RO, I decided to go for the re-excision. Had the margins shown significant amounts of DCIS, I might have gone directly to an MX.
BTW, I did have an MRI done before my LX, which indicated that the DCIS was about 1cm. The LX pathology report suggested that DCIS was around 1.4cm. I'm hoping that with this re-excision, I'll have wide margins. My RO says that if the margins are close, I'll have to do a radiation "boost."
I'll receive the re-excision path report later next week and should there be more DCIS, I'll schedule an MX--ideally direct-to-implant. I'm in my early 40s and am not quite ready to forego reconstruction, but want to avoid TEs. Fingers crossed that this re-excision does the job!
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Bromeliad: Perhaps that is why I had the radiation boosts to the incisional area because my margins were close on re-excision. What bothers me most is that the DCIS didn't even show up on the MRI. Yet, the first LX showed some pretty extensive DCIS.
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hi all -- I am STILL waiting for results -- I just sort of put it out of my head for the week they told me it would take but now it is two days late and it is beginning to drive me nuts. Also I have regained my motion. In my snb arm but the whole arm pit is sore and sensitive to the touch even up in tricep area. Not hot or red just SORE. Is that normal , ladies? My BS is on vacation so my first meeting w her isn't till aug 16 which feels forever ... I guess she isn't too worried about me....? Let's hope that turns out to be right.
Otherwise everything feels like it is sore but healing -- slowly --no need for pain meds but not and sleep is still hard. This is not a disaster but no walk in the park, ladies. I give it a big old "blah" at 10 days out! Reading about all of you in or finishing next phases both gives me hope and makes me realize this journey is long...
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Sarah R,
I had a similar experience. My surgeon went on vacation the week after my surgery. She said she'd still call me with the results once they came in. But it didn't happen. Turns out my pathology wasn't completed until the morning of my follow up 2 weeks after surgery. But I went a bit crazy waiting for the call.
I was told that if they were concerned, they'd have been in a bit more of a rush to get me into treatment. But, it was still one of the hardest waits.
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thanks ms misha -- not sure I can sit still for another week or ten days; I will call and make some noise tomorrow. Don't they realize we all feel like we are losing our minds? Doesn't help to have friends and family keep calling to say -- "so? What did you hear about the the results?"
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Clean margins and nodes, but the tumor size was larger than I was expecting. It bumped me up to a stage 2. But even so, its better knowing than wondering. That was a really tough 2 weeks.
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will let you know what I hear...
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I have taken (some) of the anxiety out of the waiting game by leaving the country! We had a Viking River Cruise planned to celebrate our 40th anniversary & retirement before BC reared its ugly head. One week after LX and I was "outta here!" Being preoccupied certainly helps during the day but sleeping sttlll su##s!
Bromeliad, I am interested to hear how your re"excision plans go. MsMisha---clean margins woot! Woot! Sarah ...you be that squeaky wheel and make ALOT of noise! Nancy-thanks for sharing part of your experience and wisdom. Maybe I have more options than what I thought & the importance of finding out just how close the margins are
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good for you heading out on a cruise 7 days later Linwentz! 7 days after my LX and biopsy I just drove with my family 6 hours to move my eldest son into his first apartment over this weekend -- and it was great to be there and be a part of seeing him on his way, but the whole thing wiped me out! Glad I went and cld be a part of things but I am super impressed you are on a real live trip! I made them give me five extra pillow in the hotel we staid in so I cld make myself a little nest ..
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Taking a trip is a great strategy! We had a 4-country 3-week trip that included a professional conference scheduled when the screening mammo showed a lump, so I did the biopsy on the way to the airport and got the news --and reassurance that I didn't need to come home early! -- over the phone with a 6-hour time difference. Made scheduling follow-ups hard, but we managed! And the distraction of the trip was a lifesaver for that period, waiting to get in to the doctor.
Question now: I have some pretty hard lumps, soreness and itchiness more than a week after an MRI-guided biopsy that must have hit a blood vessel, because they talked at the time about how I had already started bleeding, etc. The bruise was at least 6 inches long and 2 inches high -- and I'm a small-breasted person! The lump they were aiming for was at 5:00 on the right and they had to come in from the other side. Now the bruise is fading, but this discomfort started. I called the doctor who said come in if its red, hot, or leaking or if I get a temperature. None of that, but any suggestions on how to help it heal faster and be less of a bother?
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We had planned a Viking Mediterranean cruise (Rome-Barcelona, after having done their Danube-Main-Rhine cruise in 2012–6 weeks after my first knee replacement) before my husband had a colonoscopy go blooey (4 hospitalizations before a hemicolectomy) and then a hernia repair. Just when he had fully recovered, I got my BC dx. But I was determined to take that cruise, and was very lucky I didn’t need chemo or whole-breast rads. We were on our way to Rome three weeks after finishing rads. We’re planning a 22-day Barcelona-St. Petersburg-Stockholm (and points between) cruise for April 2018, maybe go to Basque country for a day beforehand.
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Wow, sounds -- I was going to say "fantastic," but that obviously only applies to the trips, not to all the awful stuff you two went through during the same time): I hope the trips have helped/will help with the healing, in all sorts of ways.
FYI I've just posted on the Clinical Trials board in Cryotherapy/ablation about what I am planning to do. Not to repost here, it is a great option for small tumors, lots of scientific proof as well as experience both here and in other countries. I didn't find much about it on this site, just a few mentions, but the science is there. As my surgeon said when I discussed it with her, maybe this is the next step forward, just like the steps that took us from mastectomies for everyone to lumpectomies, and from full ALND to SLN, etc. Plus she knows and respects the surgeon who will do the cryoablation for me, so that gives me even more confidence.
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slimslug, hope you are a successful pioneer. Way cool! (sorry, couldn’t resist).
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MsMisha, glad you finally received your results! We have a similar dx and, like you, my tumor was larger than anticipated. (Even after 4 mammograms, 3 ultrasounds and an MRI, all my doctors thought I had 2 very small masses; pathology determined it was a single, larger tumor. Darned dense breasts!) As my BS put it, "ILC is sneaky". And congratulations on your engagement!! How wonderful to have such happiness in the midst of all this!
Linwentz and ChiSandy, I'm envying your cruises. (Was your river cruise amazing? I love that area and all of the castles you can see from the river.) Getting away is really the best thing we can do to take our minds off everything going on, isn't it? We're heading to the coast of Maine in September and I can't wait to walk the beach and eat lots of seafood!
Sara R, if you already have full range of motion back, you're doing well. And if you've been doing (gentle) exercises, it may just be normal stretching and healing that you're feeling. Waiting is the worst! I'll keep positive thoughts for you. (You might try a low dose of melatonin to help you sleep. It seems to work for a lot of people.)
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Poodles, Congratulations!
I check in her every so often but am usual too late to contribute. Wishing everyone the best.
Tappermom38, Not sure if this is too late, but you may have cording. Can you feel something that feels like a string or cord running down your arm? If yes, you will probably need to go to PT. I noticed a lack of range of motion and a stiff arm and was sent to PT. PT said you have cording. It took many sessions to get rid of it, she said it was the most stubborn cord she me but eventually she broke it up with massage and exercises. Best, Mary-Jo
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We are very close to putting the house on the market. Backyard cleaned up today, carpet cleaning on Wed, porch and front door painting on Thurs. Keep your fingers crossed that the paint drips come out of the carpet, cuz I wasn't planning to replace it. We leave for Florida Friday to see DHs sister. We'll have to heave to with the cleaning after that, but it's actually pretty clean already since the walls were recently painted and the hardwoods redone. It's really happening, y'all!
Now the question is, how soon will it sell? I hope soon, but not too soon. We will be up in the mountains off and on, but couldn't get 2 months continuous so, we have 4 weeks when we will have to be out of the camper. Hope we'll have a home to come home to during that time, or we'll have to go to Plan B. Which is up for debate, right now.
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Thanks for your input, MJS. I don't feel anything like you describe. I see my RO tomorrow and I'll ask her (I have a long list of questions!).
MJ
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Poodles, you've made huge progress! Congratulations!!! I'm confused. I thought the camper was yours so why do you have 4 weeks when you can't be in it? BTW, fingers crossed on the paint on the carpeting - definitely don't want to replace it. Exciting times for you!!
HUGS!
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Oh, that was confusing. We do own the camper, but not the site it's on.If we had known back in the spring that we were going to need it for two months in the fall, we could have reserved the site. But coming late to the table, we weren't able to get a site from Sept 15- Oct 15, high season in the north Georgia mountains. So, during that time the trailer will have to go to storage and we will have to find some place to be. We *can* move it to a different campground, but we'll have to rent a truck, since we sold ours. Can't tow with a Prius, LOL.
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Good Luck, let us know that you got a resolution. Best, MJS
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Poodles, after I wrote my piece I figured out what the challenge was. I can't quite see a Prius towing a camper either
Hopefully everything will fall in place and you won't have to figure out a place to live before you can move to the camper. Aren't you buying another home? HUGS!
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Linwentz,
I hope you are enjoying your well-deserved cruise!
I received good news from my BS today--the re-excision was successful, and I have nice wide margins (6mm and 4.5mm). I can proceed with radiation after we get back from our vacation to northern Michigan. They did find more DCIS in the specimens, so it was a good thing to have more tissue taken out. I think that I'll be in radiation for 3-4 weeks. I have a simulation scheduled for the third week of August.
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Wasn't sure which thread to post this on but chose this one - my first thread! Just saw the RO. She said everything looks good - I've healed nicely. The zingers I still get are still nerve regeneration from surgery; she said they can last for months. Yippee! She recommends having the first mammogram six months after the completion of rads, which will be January for me. Her staff will send in the authorization request; I'll see her after the mammo. Then she said I'll have the next mammo either six months or a year later, depending on the January results.
My surgeon had sent me for an US as he felt something under my arm he wasn't sure about. Thought it was probably a seroma but wanted to be sure. I see him on Thursday for the report but the RO had it so she went over it with me. They found a 2.7-cm cystic mass which "could represent a postoperative seroma." While it could be something else, it's less likely. They recommend my having another US in 2-3 months "to ensure stability." So I'll see what the surgeon says on Thursday. They gave it a BI-RADS 3 - probably benign.
M
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Hi, I had my surgery on July 20th and have been waiting for the mammaprint results to see if I need chemo. Was just told today that they have to resend a sample because the first one wasn't useable. Has anyone else experience this? As you know the waiting is unbearable! My team feels I will not need chemo but are waiting for these results for final determination . I feel like I'm going out of my mind waiting for this test and now it could be 2 more weeks. Wondering why first one wasn't usable. My tumor was small at 1.2 can't believe there is any left from original pathology from surgery and first sample.
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Hi everyone! I finally got my results and bottom line is that it was just what they expected it was-- no cancer, just LCIS in one breast; and no nodal involvement -- tumor was small (3.5 mm) and they've reconfirmed that I'm Stage 1. The only thing not back is my once type but they think that it's highly unlikely that could be high enough to mean I need chemo given all the other factors. So, all things considered, yahoo,though whoever predicted that I would be celebrating weeks of radiation and years of endocrine therapy!
Was hoping this means I can sneak away for a vacation but my BS says no flying for 4-6 weeks post surgery -- did others get that advice? I still am achey and sore and tired so I don't know that I'm up for anything super exciting but really want to find a way to make this summer more than the long-running cancer story....
Btw ladies thank you for the melatonin tip, it actually did help a little -- feel a little better today!
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Thank you! I confess, I'm not brave enough to be a REAL pioneer, if I hadn't satisfied myself and my Harvard-chemistry-trained husband that this is actually the best approach, I would just stick with the tried and true. Fortunately, I really think this will eventually replace lumpectomy in a significant percentage of those who need it. As a fan of history of science, I know a change in standard of care takes time, as it should -- but sometimes I think we can hurry it along!
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Makes you wonder what they did with the sample, doesn't it?! Good luck, I know that waiting is awful. At least we're all sympathetic here. Sending happy thoughts...
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Sarah, I flew from Phoenix to Portland, ME 4 weeks post op. My RO knew that's what I hoped to do (my daughter was having surgery) and he and my BS moved quickly to finish my brachytherapy. No problems although I found out the Friday before I left Phoenix that I was going to need chemo so I really paid attention to germ prevention. Came back and had the echo and port placement. I was glad I had 10 days to heal before the first chemo. Others on this site can advise you about sleeves. I didn't need one - no lymph nodes.
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Alana1971 I am in the same boat as you, I have been waiting on my results from the Oncotype test for 3 weeks. My appointment is Thurs to get the results. I just want to get the show on the road so to speak! Waiting this long is for the birds.
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Lymphedema risk has nothing to do with the number of lymph nodes that turn up positive, but rather with the number removed for biopsy. The fewer the nodes, the lower the risk, but so long as any are removed, the risk is never zero. Taco, the “0/3 nodes” in your signature means that although none of your nodes were positive, you had three removed. I got LE, and I had no positive nodes either. But I had four removed and biopsied: 2 were sentinels, 2 were “stuck” on to the ends of the sentinels and had to “go along for the ride” of SNB.
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