Lumpectomy Lounge....let's talk!
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Hi Blooming- I have full-sized breasts too, have considered reduction most of my life before BC, and worried about the effect of a lumpectomy and radiation on such a large area. I have dense tissue and my tumor was missed by mammography for years; I had the mastectomy option, but decided against it. For me, the lesser surgical intervention seemed a good place to start. I had a hard time wrapping my head around the diagnosis and felt the mastectomy on such a large area would be too drastic a change for my mind and body to handle at the time. I am a muller, and that decision was too big for me to make then. I discussed my concerns at length with my BS and we decided to reserve that treatment option for a later time if necessary. Your decision in this regard has to be right for you!
Once I decided to do the lumpectomy, I asked that my radiation be given in the prone position to keep as much of my chest, heart, and lung out of the radiation field as possible. I preferred my "large and pendulous breast" being less exposed in this position as well, rather than trying to balance it on my ribs in the same location each time, as did my RO. Being large and braless in front of strangers was difficult enough
I did have some redness and minor skin peeling under my breast but overall it was not a major issue given my size. Seven months from diagnosis, I healed well, and feel I made the right decision for me. 0 -
Siciliana, that is awesome news! So happy when anyone can avoid chemo.
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Hello All:
Hugs and prayers to everyone. I have been working approximately 13 hour days (with my long commute to/from work) so I have not had to time to login to this site. I really appreciate all of you, even though I don't have the time to visit this site much. There is no possible way that I can catch up since I have hundreds of pages to read.
Dear Poodles: Good luck
Dear Siciliana: I am happy that you heard good news from your oncologist. Yay for no chemo. I am single too and it is hard to go through this ordeal alone. However, it is doable, especially if you have a strong support system of friends, which it sounds like you have. I went to M.D. Anderson Cancer Center in Texas alone, without a car, for my entire radiation tx. (I live in Florida.) I walked to/from the hospital every day. I was able to receive support from the Chabad of Texas Medical Center who helped me tremendously. It brings tears to my eyes when I think about how wonderful they were to me. I feel very lucky to know Rabbi and Rebbetzin Lazaroff. They operate AISHEL House which is awesome - anyone is eligible to stay there as long as the hospital tx will be for 2 weeks or longer. I happen to be Jewish but religion is not a factor for a person to stay at AISHEL House. I got lucky in finding out about AISHEL House. I connected with the Chabad because I wanted to go to services in TX, and by default, they told me about AISHEL House. Luckily for me, my Mom and Aunt were able to go to TX with me when I had my surgery, but the radiation was just too many weeks for them to go with me, so I had to go by myself. I can totally relate to how you are feeling. I offer you lots of love and support throughout your tx and bc journey.
Dear Blooming:
I had a breast reduction to both breasts along with a double lumpectomy in my left breast, at the time of my bc surgery. My doctor told me that they would have to remove too much breast tissue because one of my lumps was very large and the lumps were located at 11:00 and at 2:00 to 3:00. My doctor said that my nipples would not point in the same direction and that I would be lopsided if I did not have the breast reduction. I had radiation after my lx and my breast reduction surgery. I had no problems at all with my radiation tx due to the breast reduction. I was told in Florida that I should have a double mastectomy but the doctors at M.D. Anderson Cancer Center told me that a double lx would suffice so that is the surgery that I chose. My breasts look fantastic now. I am a size D after the reduction. Good luck with your decision. I hope this helps you regarding your concerns for you radiation tx.
Sorry that I have not responded to everyone else but know that I am supporting all of you even though I am not posting anything to you.
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My breasts are also very large and I was given the choices of lumpectomy or mastectomy, as well as reduction. The diagnoses was so overwhelming for me at the time that I couldn't make the decision. I had never been sick, had never had a problem mammogram, so when I am told I had DCIS & IDC, I went into a full panic. Just preparing myself mentally & emotionally for surgery was all I could handle. My BS and RO were very helpful in my decision to go with the lumpectomy. The surgeon practices breast conservation and the oncologist said it made sense to radiate in the prone position. My cancer was "gotten" when the biopsies were done (DCIS was 1mm & IDC was 3MM), so the surgery was to clear the margins. I had 35 rad treatments and, yes, it was embarrassing at first, but my team was so supportive, I forgot about the size of my breasts. I tolerated the treatment well. As I wrote earlier, I started using Aquaphor right away to keep my breast moist and did everything the nurses, techs and doctor told me to do. I only suffered fatigue, redness and a very tender breast. I had no peeling, blisters or tears. I am 14 months out of surgery, & 10 months out of rads. I am mostly healed; only occasional breast pain from the scar tissue inside my breast. My breast has shrunk and appears to have a permanent tan, but I am pleased with my results and glad of my decisions.
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Thank you, 614! I too will be undergoing radiation away from home, and that makes me kind of sad since spring time in the Skagit Valley is spectacular and I will miss my power walks with my friends. But I will be able to spend weekends at home. How great that you were able to find such a comfortable and supportive home away from home during your treatments! I know I will be OK and am so relieved that by the time summer begins I will be feeling better and able to enjoy the paradise I call home. Thank you all for being the friends I never knew I had.
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Dear Siciliana:
Good luck!! Maybe you can walk wherever you are having your radiation tx. I walked a lot when I was in TX. It was wonderful. There is a "sky bridge" connecting two wings of the hospital. I walked for 1 and 1/2 hours every day in the sky bridge, plus walking to/from the hospital. I chose to walk in the sky bridge because it is air conditioned, rather than walking outside in the heat. I was staying near Rice University which is beautiful. There is a Japanese Botanical Garden in Houston which is outstanding. However, I chose to walk in the a/c every day, although I did walk in the gardens and on-campus too on weekends. I am glad that you will be able to spend weekends at home during your rads tx and that you will be finished with tx for the summer so that you can enjoy the "paradise that you call home."
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My breasts are also pendulous, but the Rad. Onc. dept at my cancer center didn’t have a prone-radiation table (would have had to drive 35 miles each way every day; besides, it was my right breast so no worries about my heart getting radiated). If I had to do it over again (and didn’t have that cruise as the pot of gold at the end of my radiation arc) I would have gone for bilateral reduction at the time of the lumpectomy. I would have ended up with a lower % of body fat too.
Mastectomy makes it much less likely that you would get radiation (but it’s not an absolute guarantee). But if you are worried about the effects of anti-hormonal drugs, mastectomy does not exempt you from that. The hormone-receptor status of your tumor cells is the same regardless of how the solid tumor was removed, and so is the need to starve any possible remaining micromets.
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Blooming, another good reason to consider lumpectomy is current research is pointing to antihormonal therapy being highly effective even as neoadjuvant therapy. I had to have a mastectomy after my lumpectomy and still had radiation. I would have been very happy keeping my natural breast but I was only a C cup and too much cancer to get clean margins.
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Siciliana - So glad you don't have to do chemo. Too bad you will have to miss some of the Spring in the Skagit. I just had a reminder of the daffodils last year this time. It was the week before my surgery and t he flowers were a beautiful distraction. Are you by any chance being treated in Everett? I went through my treatment at Providence Regional Cancer Partnership in Everett. The staff was incredibly kind and efficient.
Poodles - You are in my prayers. There are no words for the sadness one experiences in your situation. wishing you and your family a break in finding a great home for your mom
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Katz, my treatment is at Overlake in Bellevue. Glad to hear you had a good experience in Everett. The daffodils are about a month later than last year. They say it will be another week or two before they are in full bloom. I have a picture of my mom standing among the daffs on February 20th last year. Then the tulips in April and May. Something to look forward to for sure!
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Small world—from 1976-8 I practiced law in the Robinswood area of Bellevue, near the Lake Hills Connector road.
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Siciliana-one of my best friends mom had a great experience being treated at Overlake.
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Sandy, have you been back to Bellevue since then? If not, I doubt you would even recognize it. Growth has exploded in the downtown core.
Katz, nice to hear that your friend's mom had good care at Overlake. I have faith in the team there. I like the "nurturing" I get from them.
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hello , I'm waiting for genetic testing, then deciding between lumpectomy radiation tamoxifen vs mastectomy tamoxifen. Did anybody have a hard time deciding? I don't really want a reconstruction. But I guess if I'm going to have a mastectomy, I'll have one then the more I think about it. But still leaning on the lumpectomy but worried that it might start again in other quadrants and or lymph nodes. Or if the biopsy of the lump comes out + again, then I'll go back to OR again . Thank you. MRI showed negative on axilla. But my boobs was tingling this week, 3 week she post biopsy, so I was checking for nodes, i can feel them in outer upper breast tissue left near armpit. And I also have lymph nodes in my Rt neck.But pa surgeon , said last week, they have nothing to do with it.
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Welcome Gkim. I chose lumpectomy because less invasive and recovery time quicker. I had to have re-excision because BS didn't get clean margins. I had fairly easy time with recovery from both surgeries. Radiation wasn't bad. Minimal side effects. Fatigue and itching. Now on Tamoxifen and have no noticeable side effects. 10 mos post surgery, lumpectomy site has some tenderness, but only if you push on it or get to jumping a lot in excercise class, lol!). I think feeling is starting to come back in armpit and underarm from node biopsy. It's very overwhelming at first but all doable. The waiting on all the tests before your treatment plan is decided I thought was the worst. You've found best place to help you through this. Others will chime in on their experiences to give you different perspectives and to help answer questions. Hang in there. Hugs!
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thank u . Hopeful it's really stage 0 when they send it again . YeAh , I do need to go back to work fast after, I have a freshman college .
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GKim, Welcome! You are definitely in the right place to get your questions answered. Unless genetic testing turns up something to contraindicate a lumpectomy, a lumpectomy is probably the way to go. As others have pointed out, once your breasts are gone, they are really gone. A lx is usually a much speedier recovery - no muscle involvement. Even gals here who have gone on to need a mastectomy don't regret having a lumpectomy first. A mastectomy is not guarantee either of BC not returning. Nothing seems to guarantee that sadly. I also had few problems with my surgery (I did have clear margins), radiation (very slight redness) and Arimidex. BTW the tingling could be from disrupted nerves from the biopsy. I have a lymph node in my right (non-cancer) armpit that I've been able to feel for nearly 20 years. It just is. Nothing there that shouldn't be. I think we are hyper-aware of everything once we get that BC diagnosis.
Where do you live? We'd love to know (make it public in your profile - you've done a great job on yours). We're likely close by
Good luck with all your decisions and that awful waiting! Hope the genetic tests come negative.
HUGS!
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GKim, it seems that paradoxically, more DCIS patients on these forums are opting for MX—and BMX at that—than are IDC patients. Maybe because DCIS seems to be bigger and higher-grade, and more often multi-focal. Things to consider are since you have tumors in both breasts, how much tissue relative to current breast size would they have to take to get clear margins? And of course, what your genetic test results will show. If mine had come back positive for mutations, I probably would have gone back for a BMX and ovario-hysterectomy. (I had genetic counseling & tests after my surgery, when my MO asked me about my ancestry—which my BS hadn’t). I have large breasts, my IDC tumor was small and off to the side, so I was okay with lumpectomy & radiation. My friend, whom I’d shamed into getting her first mammo in 25 years, had 6cm of multifocal grade 3 DCIS in one breast and a “suspicious area” in the other. Because she had very small breasts, hadn’t worn a bra in 30 years and had no desire to get back into dating after 15 yrs of widowhood, she opted for a BMX without reconstruction. The “suspicious area” in the other breast turned out to be ADH—benign but still a risk factor. Because her DCIS was ER/PR- (as DCIS often is) and they generally don’t test DCIS for HER2, her treatment was just the surgery: no anti-hormonals, no radiation, and—because chemo is not given for pure DCIS regardless of HER2 status—no chemo. You would be recommended anti-hormonals regardless of which surgical option you choose.
Know, though, that if you choose bilateral lumpectomies, there is a separate OncotypeDX test (with a different numerical scale) just for DCIS to determine whether node-negative/clean-margin lumpectomy patients can safely skip radiation. (IDC lumpectomy patients—unless 70 or older, which is a relatively recent finding—need radiation. OncotypeDX for IDC/ILC patients is to determine the risk-benefit analysis for adding chemo to anti-hormonal therapy ).
It is an intensely personal choice, dependent on one’s own individual priorities.
Siciliana, I went back to the Seattle area on vacation in ’89 & ’90, and on alumni business in ’98 and ’99. Bellevue is a much bigger city—no longer the mere suburb it was when I worked there. And on the w. side of the lake where I lived (across the street from UW Health Sciences) University Village went from being a glorified strip mall to a major outdoor shopping center. (And the student housing complex where we lived was eventually razed and replaced by a parking structure). BTW, is Boehm’s Swiss Candies still in Issaquah? It was my Waterloo when I lived there back then—and as recently as ’99, my officemates warned me—“unless you come home with Boehm’s chocolates, don’t come home.” (Their Mozart Kugeln are better than the ones I bought in Austria).
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thank you so much. The more people I talk especially who had experienced, or know other people and what they went through, I feel more calmer. We will just have to pray more harder and stronger. Thank you again. Yes, I'll look into my profile.
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GKim., you might consider reading Dr. Susan Love's "Breast Book." It's loaded with information. As you can gather, sometimes treatment guidelines change so always check with your BS. But most of the information is valid and it will help you understand more about this disease none of asked for. Sandy has great current info always. Good luck.
HUGS
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Hi guys. I've been unable to get on here for a while due to work schedule and being so tired. I am finally feeling more like my old self since completing radiation. I did have some burning and blistering the last 2 weeks of my 33 treatments. That is mostly all healed now. When I last saw the BS I was told to massage my lx scar to remove the hardness. So after about a week I then started to have quite a bit of soreness that I later identified as cording. You can see the cord as I raise my arm. I thought I have read on here about others who have had the SE from treatment; what were your treatments for this. Not sure if I should go back to the BS or go to see the lymphedema management that also does massage rehab. I guess the best place to start is with the BS. Please let me know if you have had this experience. Thanks!
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I've just found out Friday afternoon have DCIS. My doctor was kind enough to call me despite being on vacation. it seems someone in the office must have notified him. I was caught off guard and can't remember what type of specialist. Would that be a surgeon or oncologist? what can I expect?
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Solitude, you can call them on Monday for clarification. You don't need to do anything this weekend. I imagine you will be seeing a breast surgeon. Since DCIS is stage 0 and is non-invasive, you may or may not need to see an oncologist (my sister didn't).
mellang, I sympathize with you. I developed cording about 6 months after my BMX. It involved my whole right ribcage, extending all the way down my right arm to the wrist--you could see it from across the room. I could not extend my arm completely. Thankfully, I had a massage therapist who is educated in myo-fascial release. She worked on me for about 8-9 weeks, gently stretching the tissues until it finally was fixed. I have an LE specialist who I could have seen, but she's 20miles away. My massage therapist is 2 miles away. Of course, insurance did not pay for the massage therapist, so that sucked. But she was a miracle worker. After ONE session, she released most of the rib cage. The arm took a lot longer but it was totally worth it. That was last summer and I haven't had anymore trouble with cording since she finished in Sept.
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Solitude, see the surgeon first to discuss your options. With DCIS, you probably would not need a medical oncologist until your surgical pathology results are in, which wold determine your treatment (if any) going forward. Chances are your doctor was notified by the radiologist who did the imaging for your biopsy &/or the pathologist who examined the tissue. At the very least, ask about the estimated tumor size, grade and hormone-receptor status. (“estimated” because you can’t know the tumor’s actual size until it’s been removed). Find out if your hospital’s health care system has an online "patient portal," and if it does, sign up for a free account. All your test results and communications would be sent to your portal inbox, and making appointments would be faster & easier.
Mellang, I had forearm cording before I had lymphedema symptoms. That’s why I made an appt. with my hospital’s LE specialist. That first cord popped on its own before I saw him. He diagnosed stage 0 LE and gave me a referral for 12 PT sessions. My PT did stretches and massages to break up an additional (axillary) cord, and gave me a rubber pad to do that massage on my own and a “Swell Spot” pad to wear in my sleep bra to soften the fibrosis in my scar area.
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hI chiSandy....I just joined this 3 minutes ago and saw your post. You had the same apparent results as I do...I I had surgery 3 weeks ago...waiting for a mammoprint result because the onkotype was "intermediate"....did you have those tests? It is very encouraging that the first post I see did not have to have chemo. Thanks..CM
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I was not given drains after lumpectomy...and have hard lumpy fluid bumps which the dr has drained 2x....felt so much better! Does anyone else deal with this? Did the massage eventually help? I am wondering if I should go get drained again? Thanks!!
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Geez, Sandy, if I'd been offered a reduction at the time of surgery I'd have definitely gone for it!
Taco, thanks for talking about life expectancy tables. I truly don't know where I'd fall, but I HOPE for another 10 - 15 years. I will chat with the RO about it on Tues.
Vargadoll, are you premenopausal? I'm post and the MO is recommending Arimidex. She says they can treat bone loss and the heart stuff is up to the cardiologist. And so far, I don't have heart disease so maybe I'll come out lucky. And that for post menopausal women, the AIs are more effective. I was sort of expecting her to send me home with a prescription but she said not until the RO helps me make a decision.
Which leads me to a question: once you've had cancer, does that make you more susceptible to OTHER cancers? And is a new cancer more likely in a survivor than in someone never before diagnosed?
I'm finding this group very educational!
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Hi, Carolyn. I did have the OncotypeDX test, but the result was 16, still “low." My oncologist e-mailed me the results in big bold type, saying “Good news: OncotypeDX 16. NO CHEMO!" Therefore, we didn't test any further. We've had two women here whose ODX scores were “intermediate." One had a score of 20, which is as high above the threshhold for “intermediate" as mine was below. The other's score was 23. The one with the 20 score had a Prosigna rather than Mammaprint, and it came back “high risk." But the one with the 23 score had Mammaprint, which came back “low risk."
I didn't have drains in either of my incisions (lumpectomy or SNB). I did get seromas (fluid-filled spaces) in both my breast and armpit. (Nature abhors a vacuum…as do my cats
…and so when something in the body is removed the cavity often fills with fluid). I still have the one in my breast, but it's not close to the surface, never “sloshed" and is about half the size it was when I started radiation. It may never fully resorb, but it's keeping my breast looking normal. So I never had any inclination to get it drained, and neither did any of my doctors. But the one in the armpit gushed all over the place one day after the last of the Steri-strips came off and the surgical adhesive failed to hold (the second surgeon, who sutured it closed, said the weight of my large breast had pulled it open and in his opinion it would never have healed from the inside out and should have been sutured from the get-go. When I asked if I should have had breast reduction, he was diplomatic, replying I wasn't his patient but rather his partner's). About a week before that I had asked my surgeon's NP if it should be drained and she was against it, saying that the risk of infection was too great. Ha). The sutures held and the incision healed without further leakage). 0 -
Natsera- up until my diagnosis (Dec 23, 2016) my periods were like clock work. (With the exception of one birth control incident in the 90's) I should have started my cycle around Christmas and didn't until January 7th. I skipped February. I figured I would just be late again since surgery was February 7th. Here it is March and still nothing. The oncologist did blood work while I was there last week to get a base line on my levels to determine where I am. My mom and sister both had a hysterectomy mid 30's so no family history to compare my cycle to.
I'm day 3 on tamoxifen and have no SE. (Yet fingers crossed) I am sleeping better than ever. As a matter of fact I'm sleeping so well I'm afraid I will not hear my girl if she wakes up! I have not slept this well in years.
Have beautiful Sunday! Welcome to the new girls!
Got to get ready for church I do have a slew of questions about cording when I have time to pop back in!
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thank u for the tips. I appreciate . I will check on the book.
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