Lumpectomy Lounge....let's talk!
Comments
-
kayfry....Sea Grove Beach in Florida. It's right next to SeaSide and about 30 minutes from Panama City. Weather was gorgeous. My hubby took that sunrise pic. You are so close to the finish line....only 4 more boosts! So happy for you.
0 -
Nash, very nice. My husband and I are both from Florida—he from Miami/Hialeah, me from Sarasota. Have never been to this beach though. Sounds great to me, since I still saw snowflakes here in PA today, and it was really cold!
I finished 15 today. Very happy to be almost there. And you are proof there are beaches after rads!
0 -
I had my meeting with the MO today. She seems okay, very clinical. The only thing I didn't like is that she called DCIS pre-cancer. That really bugged me. I mean, if the cell creeps a little bit out of the ducts she considers it cancer. I know I am very fortunate that it hasn't spread, but to me it is the same damn cell. I also find it odd that my BS calls it cancer and they work at the same hospital. And, my RO also calls it cancer. Anyways, the appointment went well and she is recommending Tamoxifen. However, she said there is a research study that is going to be released in June comparing Tamoxifen to Arimidex, so that could change. I will be starting it after my rads which start on Monday, 15 +6 boosts. There is still quite a bit of swelling and a large seroma. She told me that I will most likely have more swelling from the radiation. The bottom line is that I won't know how my breast will look for another 4 to 5 months. She expects it to take that long for all the swelling to subside. It's not a big deal, but I am a bit curious to see the final size.0 -
Rekidal, I was confused for awhile about this "cancer/pre-cancer" aspect of DCIS when I was diagnosed, too. The thing I learned about DCIS is that it's actually kind of a controversial issue in medicine, and especially the terminology. If I understand correctly, yes, it's the same damned cell. Except, not quite. I used to think that at any minute my cancerous DCIS cells might break through the duct wall and become invasive cancer—what would stop them? And it's true that DCIS might do that, eventually, if left untreated, Or it might not. The cells have to undergo a final mutation in order to be able to escape the duct, which is why many doctors consider DCIS pre-cancer. However, I see that yours is Grade 3 (as was mine on initial pathology), and for the higher grade DCIS it's thought to be much more likely to become invasive, making that final change, than a lower grade DCIS. The fact that your MO, RO, and BS don't even all agree on what to call it reflects that all of this is evolving as we speak. But the important thing is if they agree on what to DO about it, right? As far as I'm concerned, it's cancer. We treat it as if it were cancer, and if we didn't treat it, it might progress to that stage, so what's the difference? It is, however, at a very early stage, and because it has not left the duct, it makes our course of treatment a lot less complicated and less difficult.
Also, there seems to be a lack of agreement on the hormonal therapies, from what I can tell. My own BS told me that Tamoxifen would be his recommendation for me, even though I'm post-menopausal, whereas others have said it's an age-related thing. He said that's not really the case, so that's also not settled. (My pathology made it a moot point for me, since I was only 1% ER positive and 0% PR, so no hormonal therapy indicated for me). They have different side effects and risks, so that might be something to take into account.
I have swelling now in my treated breast, and I had swelling after my lumpectomy, too. Since the surgery took a big chunk out of my already small breast, I don't really mind the swelling
But I expect it will eventually go away, and possibly then my breast will be both dented and smaller than before. Don't know. The plastic surgeon I consulted after surgery but prior to starting rads wants to wait at least 6 months IF I decide I want to have any kind of reconstruction, which I currently think I probably won't. Since my treated breast was formerly slightly larger than the other one, maybe I will just be even. Or maybe not. But the PS wants to see how things are looking about 3 months or so after ending rads, and will have a better idea of what could be done to improve things at that point. It's such a process, isn't it?0 -
Hi, everyone!
I haven't used the breastcancer.org site for a while, and I'm delighted to find this lumpectomy discussion. I had mine in 2011, followed by chemo and radiation, and have been on Letrozole since. My concern recently is my treated breast itches a lot. I still find bras uncomfortable and the itching is worse if I've worn one for any time at all. (Don't like to go out with saggy boobs!) Anyone else having this problem so long after?
0 -
Hi, Lindsay72! I had my lumpy just in July but I do have a couple thoughts. Maybe something leftover from radiation? Or sensitivity to something? Does a bra cause discomfort as well as itching? Have you tried Aquaphor, Benadryl creme, hydrocortisone creme? Maybe one of those would relieve the itchiness for you.
I find bras still not as comfortable as the were prior to surgery. I'm small and I wear padded camis I get at Walmart. They are much more comfy than bras for me (not that the bras hurt but the camis are less restricting I guess). If I really want a figure, then out comes the pretty, well-padded bras. I may change my mind this summer but so far I'd rather be in the camis. I'm 69 and sagging boobs come with the territory.
HUGS!!
0 -
Kay, it is a process. It is an emotional roller coaster, and I hate roller coasters! Maybe one day they will all agree, but I doubt it. My path report says ER >90 percent and PR 60 percent. MO said that Tamoxifen can be used for post as well. She said that she generally recommends Arimidex for post menopausal women with invasive cancer. And, sometimes if the person is having difficulty with Tamoxifen and is post menopausal. I am going to be having a blood test to determine if I am in fact post menopausal. I had an endometrial ablation about 7 to 8 years ago and haven't had a cycle since then, so the blood test should answer that question. As far as the swelling, I am large breasted, so my sister told me to "think positive, at least they will both match during the summer and bathing suit season". So I guess that is one good thing about the swelling. Lol. I haven't spoken with a PS and not sure if I will. The BS took so much tissue that I am not sure how much of the lower half is left. She had to take the tissue right up to the skin on 3 of the 6 margins. Someday I am going to really have someone figure out the exact amount removed. The RO quickly calculated over 29 cm's of tissue removed. I had to laugh because she quickly said, well of course not right across, it includes the width, depth, etc. I swear sometimes that doctors think their patients are stupid. She then told me how relieved she was that there was a typo on my records stating that I was an A cup. She said she read my report and thought "that poor woman must not have any breast left". Boy was she really surprised. I saw that you have almost completed your treatments, that is fantastic. I hope you are going to go somewhere or someplace to celebrate when your done. That picture of the beach was beautiful, perhaps that would be a good place to go.0 -
Hello, all! Lumpectomy tomorrow and meeting my RO and MO on 4/2. Already have a long list of questions for them.
Found out today that my mom, who has ovarian cancer, just had blood drawn for the BRCA test. I just cried. It feels like such an incredible gift now that we know that there is more cancer than we had thought in the family.
0 -
Curlykat....good luck tomorrow. Hope all goes smoothly. Keep us posted (((hugs))). Remember to ice the area to keep the swelling down.
0 -
Hello I feel a little bad to say something when others have cancer far worse than me. My story is a little complicated apparently when I had a biopsy in 2012 initially it was said to be benign but almost three years later I am called and told I have Ductal carcinoma in situ. I went and had a lumpectomy in February, margins were close so I had another lumpectomy March 3rd and now the margins are still not clear and they want to do another one. I have family hx on Breast cancer, had an aunt to die from it a few years ago plus a cousin had cancer of the Breast. I am not inclined to have another lumpectomy because something in my spirit is telling me no and to do the mastectomy. I am 63 years old and not overly attached to the idea of breasts. I have had a lot of pain with the second lumpectomy, I have these piercing, burning pain that really hurts but my doctors really do not address this issue. It really hearts and when the pain comes sometimes it doubles me over. Has anyone had this issue following Breast surgery? I am scheduled for a second opinion because I am not feeling that my current surgeon has my best interest at heart. The cancer is estrogen receptor positive. Thank you for listening.
0 -
CurlyKat, that is an incredible gift your mom is giving you. Good luck tomorrow! You'll do just fine. HUGS to you and mom!
0 -
4EverSugar....never feel bad about having "a lesser case" of cancer...cancer is cancer and it's scary not matter what. I think LX vs MX is such a personal decision because the survival rates are the same. If one option gives you more peace then I think that is the right option for you. I personally went with the less is best...I choice the less invasive procedure given that the outcomes are the same. I have had weird sensations off and on since my LX but nothing that had me doubled over. One of the most important choices for me was a surgeon that I had complete confidence in. I'm not sure a MX will assure any less pain. There is a lady on this board that had a similar situation as yours....had to have 3 LX to get clear margins. Best of luck with your decision and welcome to the lounge!
0 -
4EverSugar, I had to have multiple lumpectomies. The second one caused extensive bruising, actually a little scary, and much more pain than the biopsy and the first lx. I found that sometimes I would have to cross my arms to hold my breast up to ease the throbbing. The first time I took my bra off to shower the pain took my breath away. I almost put it back on to take the shower. It happened a couple of times after, but then stopped. I would get sharp twinges and a burning sensation. Those would occur if I tried lifting anything close to the weight of a gallon of milk, and sometimes if I just stood too long. It even hurt when I tried to open jars. A week and a half following that surgery, I had my last lx. For me, I had gone that far and went into that surgery thinking third time's a charm. Prior to the surgery, I told my BS to be aggressive. I told her that before each surgery, and she always listened. When I met with her for my post op appointment she said that she had only planned on taking one 1.5cm (one margin left to clear), at the last moment she took an additional piece. I am so glad that she did because that is what gave me the clear margin. She had already told me that it would be my last lx, that the next step would be Mx. Oh, and I was told by one of the nurses that my breast had clots that had to be removed from the previous surgery. I am sure that is why my breast looked and felt like it had been run over by a truck. I also had a lot of fatigue which I was not expecting. My BS told me that I had been through a lot in 3 1/2 weeks, and my body needed time to heal and it had no time between surgeries. It is feeling much better now, although I do get sharp twinges every once and a while and is still very sensitive. It is still quite swollen and I have a large seroma. I was told by my MO that it will take about 4 to 5 months for the swelling to completely go away, especially since I start my rads Monday and those may cause swelling. I chose lumpectomies because I knew I would want reconstruction surgery with Mx and didn't want to have to have future surgeries, with the possibility of complications. A lot of people gave me their unsolicited advice, but I had to make the choice that was right for me. I went for a second opinion after my biopsy and loved the second surgeon. She made it all about me. She told me that she wasn't recommending an Mx, but that it was my decision and she would support me. So happy that I changed. I went in with 2 pages of questions and she answered each and every one. She also went through my biopsy path report, which the previous surgeon told me I didn't need to see because I wouldn't understand and it would only cause fear. That was only one of the reasons I switched. She was condescending and had a God complex. I wish you the very best, and remember it is a decision only you can make. Good luck and keep us posted!
0 -
Rekidal, you were so right to switch surgeons. There's no excuse for such condescending treatment. So glad the second surgeon was wonderful.
0 -
Kay, thanks she is great. I just contacted her today about the MO I met with yesterday, and about switching to someone else. I told her she was nice, very clinical and that I felt a little rushed. I told her how she kept referring to DCIS as pre-cancer. It really bugged me. BS said no, it is cancer just non-invasive. My RO feels the same way. So it looks like I will be changing my MO. Lol. My surgeon agreed that I need to be comfortable with the oncologist. It is strange how they are both in the same facility, essentially the same team, but have different views. Did all your doctors consider yours cancer?
0 -
Rekidal, I didn't have a MO, since my hormone receptors were basically zero, so no medical therapy indicated. I never got into the semantics of cancer/not cancer with my BS and RO. But having read articles written by my BS, I think he considers it a pre-invasive cancer. (I personally think it is very dismissive of that MO to insist on calling DCIS pre-cancer, even if it's really just a matter of words. Because words do matter!) My BS, on my first visit with him, carefully described to me what DCIS is and how the cells look and act (he even drew little pictures for me!), and that left little doubt in my mind that those cells are cancer. My RO is all-business and we never really discussed it, but to me it was understood that what I had was cancer, and that's why I was there for radiation. I think the important thing for you is that you feel comfortable with all of your doctors, as if you're all on the same page.
0 -
Kay, you are very right. I would be more comfortable if we were all on the same page. I thought that the doctors at Dana Farber all considered it the same. Although, I really shouldn't be surprised after reading all the different articles and watching all the videos. Maybe some day they will all agree.
0 -
Lindsey,
I was having a very painful nipple months after my surgery and I complained every week to my RO. He said he would give me some hydrocortisone if I was sure it was pain and not itchiness. He said itchiness could be a sign of cancer. You may want to discuss your itchiness with your doctor to be sure it's just irritation before trying anything on your own. Hopefully, an easy fix. Take care.
J
0 -
Thanks, Jo,
I saw my oncologist yesterday and he said just irritation, no signs of anything worse. Radiated skin always finicky, I guess. Just to use a non-perfumed cream etc. I liked the previous advice re double-rinsing bras or anything touching the skin.
0 -
Lindsay, as I prepare to finish rads, nurse told me yesterday that the skin of my rads breast may always be drier than normal, and that I should just use a good moisturizer on it as needed. I'm to use the Miaderm I have until it's gone, but then anything non-irritating and unscented like Aveeno or whatever.
0 -
Lumpectomy went well yesterday. Had the same anesthesiologist and told him before hand that prior to the biopsy I told him I would be sick and I was. So he changed the "cocktail" this time around and between that and the acupressure bracelets, I didn't have any nausea! (Thank God!)
Looks like surgeon was aggressive - I'm glad of that. I'm already seeing a large "dent" where he did the LX. RO, MO, and surgical follow up on 4/2.
Talked to the parents last night. They're submitting Mom's BRCA testing to Medicare, but will pay out of pocket if they can't get coverage. Could be 3-4 weeks, from what I understand. I will talk to my Os about it when I see them. I had always planned on holding on to my ovaries as long as possible (I have endometriosis, so their removal has always been something I've contemplated), but I'll be almost 47 when I start Tamoxifen, so if that's going to put me into menopause anyway, there's no reason to keep them if I have elevated risk of ovarian cancer.
0 -
Curlykat - Glad it went well and that you were such a good advocate for yourself. That alone will get you through all this. My surgical follow up is on the same date. I am wishing you the best.
0 -
Curlykat0 -
Anyone else think the new descriptions are a mess? I don't think we need two listings (different of course) for an Lx, nor 3 different ways of describing an SLNB. Makes it very hard to figure out what the heck was done. I don't find it helpful. What do YOU think, Ladies?
(Just noticed that the date for starting radiation listed below does NOT match the date in my profile. The one below is one day earlier. Same with the date of my lumpectomy. What gives??????)
Edit #2. Now it's changed to the correct dates. I'd better have more wine!
Edit #3. It's change back to wrong. Where's that bottle?
0 -
hello nash54 good to hear from you. Coming into nashville easter for family dinner. How did your dr appt. go? Shuf. (Live,laugh and love)
0 -
Hi All -
If I am beginning to suspect that I may have a slight (mild) case of lymphedema, my question is which doctor do I consult about this - the surgeon, RP,or MO? Actually I may had it over the past three weeks or so. Someone with medical experience, not necessarily specializing in cancer, but a person I trust implicitly suggested that I have it checked.
MarieBernice6234
0 -
Shuf....follow-up appt was short and sweet. Actually just saw the nurse practitioner....she did a quick physical, asked if I was having any problems (which I'm not) and sent me on my merry way.
Hope you have a great Easter with your family.
0 -
Marie.... My BS provided the prescription for lymph-edema eval and ( if needed) therapy. Maggie
0 -
marie, my SO checks me everytime I go. I have been referred to a lymphedema therapiest . I go twice a week and got fitted for an arm band. They caught mine early so I am having very good luck with side effects. Shuf (live, laugh and love)
0 -
Good segment on 60 minutes tonight regarding the use of the Polio virus to treat various cancers. The focus was on brain cancer but breast cancer was also mentioned near the end of the segment. If you missed it you can google it. I think I just keyed in "60 minutes on cancer" and found the segment.
0
