Lumpectomy Lounge....let's talk!
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http://www.lbbc.org/Event-Archive/2012-05-17-DCIS
At this page you can download both the powerpoint I mentioned, and also a podcast (MP3 format) of the talk he gave at this conference. I listened to the talk right after I knew he was going to be my surgeon, and it was very helpful as well as reassuring that I felt I was in good hands.
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Kay, just use the little paperclip looking thing right above the editing box and post your link there and it will work.
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Okay, thanks. I think I got it to work now. Let me know if it doesn't!
And now, a little reading and to bed!
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Kay, it worked just fine. Thanks for posting it.
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Kayfry when you post a link be sure and use the icon above. I guess it's suppose to look like a link.
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Oceangirl, was your family BRACA tested ? 3 of us were and we were all negative I also had a ecadherin test ran as my sister passed from stomach cancer at age 44 and it is now discovered that stomach and certain breast cancers are connected but thankfully I was negative for that as well. Its just scary! Actually I found out there was 6 in 2013 from my family diagnosed with breast cancer- My 40 yr old 2nd cousin from my fathers side along with a 65 year old cousin in law, along with my sister, myself. my niece and a 45 yr old cousin from my moms side. Not everyone is related but really makes a person wonder.
I did have some lymphedema after radiation. I over did it at work and my whole arm swelled up so the doctor send me to OT he also insisted I take a month off of work to heal as I hadn't done that. I went to OT from I believe Sept to March. I am just careful now. The Oncologist thought I still had a bit of it when I saw him in December and will refer me back to OT if I need it but so far it seems to be ok. I am just always afraid to aggravate it so I wear my sleeve. The doctor prescribed my sleeve so it was covered by insurance as it was $65.00.
After I had my lumpectomy I used a lot of ice. I would wrap an ice pack in a towel and leave it on for about 15 min. It was great for swelling and pain. I was just very careful when the arm pit was numb to not over do it. I also used the ice packs a lot during my internal rads as my girl swelled a lot then.
The arm exercise or finger walk up the wall. OT told me to do it twice a day. They said to do it once in the shower and then later heat the shoulder/armpit area up- I used a rice pack I stick in the microwave and then do the exercise- They recommended finger walking up the wall 10 times at 2 x a day.
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I'm so behind! Just to throw my 2 cents in. I had radiation 6 weeks after surgery. It was after my oncotype test came back. I had my first appointment with the RO before that. They just went over what to expect etc. On my second appointment they did the CT scan and gave me the tattoos that no one was ever able to find the entire time. I started taking the tamoxifen the day after I finished radiation. They said they wanted to keep them separate to determine what side effects were coming from what.
My breast is finally getting to be what I guess is my new normal. The swelling from everything has gone down, the color is back to almost matching the others. The only residual things I have is very hard scar tissue by the incision site and my nipple is still peeling and all crusty. My tender skin under my breast is healing and I can go most of the day wearing a regular bra (non wire) and not a Genie bra or sports bra. It is quite a bit smaller than the other. The tumor was quite large and they took 14 mm margins all around to make sure.
I've gone a month without any doctor's appointments which just seems weird now.
2 months ago, I never thought I would get to where I am now. If I can do it, you women definitely can too. All I can say is thank God for all you wonderful ladies here. You really have helped me through everything!
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Hi ndgrrl, I'm sorry you got lymphedema. I'm glad it's under control now. What kind of work were you doing that seemed to bring it on? Was it only computer work or were there things to lift? I just work at the computer and I don't know if that's ok or not. I've started to work a lot more lately. I'm so scared of lymphedema- please let me know if you think I should take more of a break from the computer!
Also, how many days was it between the tattoo appointment and the first day of rads?
Jeanelle, That is great that you have gotten through it all! Do you think you would have felt ok to drive around sightseeing during rads or was your skin, nipple, and incision too sore? I am going to be staying in a hotel at the hospital and I'm wondering how much I'm going to be able to do if my family comes up for the weekends. Also, would I be able to drive the 2 1/2 hours home to see them on the weekends. Right now I'm still so sore I don't even know how I'll drive the 2 1/2 hours to get to the first rads on my own. My husband won't be able to drive me since I'll be staying there and I'll need my car.
Do you think I should just wait the full 6 weeks to start? I have to decide since oncotype is coming back early so it won't be an excuse to wait longer! If I wait only 4 weeks to start then I'll be back in time to see my son at home when he visits for spring break. That would be better than having him stay at the hospital with me or at home with the rest of the family and not see me. But I don't feel ready to start! Thanks for your advice, everyone! You guys are so much help!
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p.s. Am I making too much of being ready to start for rads? Are the first few weeks pretty easy so that it doesn't really matter if you're healed all the way or not? Is no one really healed when they start? Thanks everyone!
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OceanGirl, you'll be pretty well healed at 6 weeks - those pesky nerves will still be reminding you of their unhappy presence. I would wait 6 weeks however I can understand why you want to start sooner. I would too. I wasn't sore particularly ever and was driving right away. Sounds like you are quite miserable - I'm sorry. The setup day should be fairly close to the start of rads so there isn't much change in your breast before you start rads, although they measure every time they do rads. You just need to be able to lay your arm above your head and hold it there for about 10-15 minutes. I wouldn't stress out too much about how healed you are. Just so you are comfortable. HUGS!!!
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oceangirl654...I think if your doc says your ready in 4 weeks and you can get there mentally...go for it. I don't think it's as bad are you think it will be. So women have no problems with rads and even work during treatment. I had internal rads so mine was only 2x a day for 5 days. I never felt bad during treatment and continued to walk in between the morning and afternoon treatment. All this to say, the sooner you get it over with the better you'll feel. I think if you can do some gentle exercise like walking during treatment it will help with stress and fatigue.
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Hi everyone, I am back to work today, for most of the day. I can already tell that even sitting at the computer, my arm is getting bothered, so I will take it easy. I had to reschedule my drs appt from tomorrow until Thursday. Which is ok, we just got notice that our college will be closing, so I can stay home lounging on the couch with the dog
We are expected to get 2 ft of snow. I love days like this and we haven't had a real nor'easter yet this winter. I don't really expect to hear anything new from the path report. Says me, with all of this medical knowledge I have I am pretty sure chemo will be required, and when I started looking at the Chemo diss. board, I saw that many of them had the same Dx as me. Only thing I am not really sure about is my stage, but it is pretty easy to determine just by reading relevant and trustworthy sites. I so need to get my hair done, but I really don't want to spend money on that, especially if I'm just going to lose it soon. That seems silly, I know. But I could get a couple of pretty hats instead.
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BikerBabe, snow days ARE nice. You don't have to feel guilty about sitting around snuggled up with the fur friends and doing nothing. I hope that you find chemo isn't necessary. But if it is, it sounds like you have the right attitude. HUGS!!!!
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Ocean, I worked full-time throughout radiation. I think there were only like 2-3 days when I only worked a half day and went home and rested before radiation. I was going to be early and didn't really do much around the house during that time. I know that during the worse part of the radiation, if I went out on the weekends to run errands or go out to dinner, I would come home exhausted and need a nap. I had some major skin issues during the last couple of weeks of radiation and was given a short break and then had my last treatments spread out (it was over Thanksgiving so it was easy to do). However, even with those issues, I wasn't in a lot of pain. Tylenol took care of what little I did have. You may be fine going sight-seeing with your family. Just don't expect to be able to run all day. I am sure you will do fine.
Bikebabe, so glad you are feeling good and are back to work. I'm jealous over the snow day. We haven't had really any snow here this year. Enjoy your day off and get better!
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kayfry...thanks for the link. Very informative. Just when I think I'm starting to understand this BC I learn something new.
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You're welcome! I have saved this link, too, and will probably read all of this more than once. As I said, I think Dr. Euhus is really good at helping to make sense of all the complicating details of DCIS.
So I just wanted to say that I made it to my appointments today with no trouble from weather at all (most of the really nasty weather is going north of here, so we left extra driving time and arrived early for the appointment. Then had to wait quite awhile because Dr. E. was running way behind. He takes his time explaining, which means that the 15-minute appointments scheduled for him are not necessarily adequate. But it was fine.
Good news, pretty much all good news. ALL of my margins are clear! No question at all of re-excision, that was a misinterpretation by the person who delivered the results to me over the phone. And definitely, as I'd been told, it's pure DCIS, no invasive cancer. And it WAS downgraded from grade 3 to grade 2, which surprised even Dr. Euhus (he said that hardly ever happens). The explanation is that the Hopkins pathologists simply read both my Pennsylvania biopsy pathology (which they reviewed) and the Lx pathology as grade 2. Not that it probably changes anything much, but it's still good! Everything with my girl looks good, although the RO kind of burst my bubble when she said there's probably still some swelling, so the fairly good symmetry I still have may go away if swelling goes down. Boo.
So I have my appointment for CT, tattoo, and whatever all else to set up the rads in 3 weeks from now, and then 2 weeks after that the trial run, and then rads for real starting the next day—so that will actually be 7 weeks post-op. Looks like March will be rads month for me: 19 total treatments, so 4 weeks—the last 4 treatments are focused just on the lumpy area. They think I won't have many problems with rads, and I hope that's true. I have a follow-up with BS, with another mammogram in 6 months, after that just yearly mammos if all goes as planned.
The one surprise for me is that my ER and PR status is now borderline weak positive (10 percent) for both. RO said she thinks I don't need tamoxifen (and Dr. Euhus told me it's not the case that tamoxifen is not ever used for post-menopausal women, by the way. It and the aromatase each have their own side effects—very small risk of uterine cancer (I do still have mine) with tamoxifen, some chance of bone loss issues with aromatase. Dr. Euhus wants me to meet with a MO to discuss this, because he says my hormone receptor status puts me in a gray area—right on the border of whether it would be considered useful to treat with one of these two things or not. Because I do have some other strikes against me—the size of my DCIS turned out to be large, 2.4 cm, and grade 2-3 comedo necrosis. I don't know. I am certainly okay with talking with MO about this; but that's 5 years of a not entirely risk and side effect-free drug (he said hot flashes, and I've been there and don't especially want to go back there!), so I would want to be convinced that the benefit is worth it. I wouldn't take it until after finishing rads, so I have some time to research and meet with MO and mull it over. One step at a time. But overall, I'm feeling pretty relieved. Also, I can't believe it, but I forgot to even ask about HER2, and it wasn't mentioned. I'm guessing it wasn't tested for. I hope to get a copy of my pathology, but in the meantime, I've been doing some research about that, too, and I see that it's kind of controversial, not really standard or useful for pure DCIS than for invasive. Beesie talks about it in the DCIS forum here if anyone wants to check that out. Scroll down to DCIS and HER status.
I think the tumor wound up being 2.4 cm because the crackerjack radiologists at Hopkins identified that second faint but suspicious area (that's what Dr. E. said, that we owed it to them, because he, too, was surprised that the tumor wound up being that large), and in order to ensure all clear margins, I think a lot more tissue was taken in between (only 3 of 10 slices of tissue contained cancerous cells), but I believe if I had gone ahead with treatment here in PA, the second area of DCIS would have been totally missed—I was kind of being rushed into surgery up here before I decided (almost right away) to go to Hopkins. I think my risk of recurrence or the DCIS becoming invasive would have been pretty high, so I feel very lucky.
If my lumpy girl winds up disappearing after swelling goes down and rads and all, which she may not, there is always the fat-grafting procedure to consider in the future. But maybe things will settle down and be okay in 6 months or a year, who knows? Oh, and I'm officially cleared to do anything I want. Dr. Euhus said to just use pain as a guide (if it hurts don't do it!) Which is pretty much what I've been doing since surgery. For those of you on about the same timetable as I am, maybe this is good to know?
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Dear Kay - I'm glad you were able to make it to your appointment despite the high drama about the weather. Even more happy to read all your good news! Now you can relax and focus on healing up.
Regarding endocrine therapy - please remember that a) you don't have to continue if you have problems b) there are several different A/Is and people seem to respond to them differently and c) not all women experience the side effects.
I'm not saying that your experience would be the same as mine but I have been on Femara for 3.5 months without any issues whatsoever. In your shoes, I'd much rather take an AI as insurance than deal with either chemo or radiation. So please, do discuss it with an MO with an open mind.
I hope the worst of the weather continues to pass you by so you can spend some time with that beautiful horse of yours!
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hi all. Just thought I'd drop a note to say I am reading all your posts and hopefully I'll reply to some soon. I'm just about to head out the door for surgery... I'm very nervous. Thinking of you all. You all give me courage and I use you all as a source of inspiration. Hugs xxx
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Kayfry...great news!!! Like Hopeful said you can always stop taking AI if you have any side effects. I'm also on Femara and so far no SE's .
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Hopeful, thank you. This is definitely good to know. I do plan to meet with the MO; they're supposed to call me to set up that appointment. After I meet with him/her, I may feel entirely differently, and I definitely will approach with an open mind. I am on the hook for radiation, but I would get out of it if I could
I would go pretty far to avoid chemo. The trouble with all this BC stuff is that every single thing is complicated, shades of gray, right? Plusses and minuses, this vs. that. Weighing the odds. It's a bit exhausting! But the alternative—no way to prevent dying from this—is way worse. I try to keep that in mind every time some unappealing treatment is held up as being possibly useful. How long will you be taking Femara, and which type is it? What are the potential side effects that you have been lucky enough to avoid?0 -
Shaz, thinking of you! Sending positive thoughts that surgery will go well! Please let us know ASAP.
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Dear Shaz - Yikes, it is the 27th for you, isn't it?
I hope it all goes perfectly - that no more cancerous cells are found and that you'll have no ill effects once your incision heals up. We're all pulling for you.
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Shaz (((hugs)))
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Shaz GOOD LUCK!!! We're all with you! HUGS!!!
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Kay, What a good appointment! That's wonderful! I'm so happy for you. True that post-menopausal women take tamoxifen. But I gather AIs work better. BTW, I haven't experienced any hot flashes. I think we're so far from that state that it shouldn't be an issue! Every treatment I've done, I've kept one thing in mind: get rid of the cancer and keep it from coming back. So I happily went through radiation and had virtually no side effects. I'll happily take AIs or whatever for 5 or 10 years if that's what it takes. I'm just so glad to have treatment options for the long haul. (BTW Femara is an AI).
Now you can breathe. Sounds like you have the perfect doctor too - that's great!
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Best wishes for an easy surgery, Shaz!!!
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Best wishes Shaz! You will do great!
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Kay, Great news. Ask for a hard copy of your path report.
Shaz, I am thinking about you as you go for your surgery. Hope everything goes well and you have a swift recovery.
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Kay, I'll second that. ALWAYS ask for a copy of any report and file it away for future reference. It's important for you to have it if you ever have to explain to another doc what has been going on.
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Gentle hugs to you Shaz. I'm confident you are in good hands and all will go well.
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