Lumpectomy Lounge....let's talk!
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Theresa, I know exactly what you mean about the safety net being gone. I'm sure I'm gonna feel the same way. I guess what we need to do is try our best to stay active every day, eat healthy, sleep well, and stay at or get to a healthy weight. Our priorities have to change to fight our best fight.
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Peggy, it's gorgeous. Exactly the kind of house I would choose. Being close to son and minutes from shopping should be doable even without driving.
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Pinki, you sound like me after my mx. I had to have 4 PT sessions to get my RO back. It still is hard to maintain.
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hi ladies,
I finished my sixth and last round of TC two weeks ago. Yay! About 2 weeks before that last round, i was so fatigued...it has not let up. I have to drag myself to walk and go to zumba where I can't seem to lift my legs much. I get achy and out of breath walking up small hills and stairs. I have not been a total slump for the last four months. Anyone else have this lack of energy at the end of chemo?
Cyberhugs to you all!
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Hawaiimom - Im 13 weeks PFC now but yes during and after chemo had severe fatigue, couldnt walk far, achey legs and out of breath. Am getting better, but still bad achey legs and apparently takes 6-12 months to get over my Oncology staff said.
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Hi everyone It's been a while since I've posted. Politics have taken up a lot of free time. What a year.
I am in the middle of rads. After this mornings session I will have 18 treatments under my belt. Or actually it's above my belt! My skin is dark red and getting tight especially around my clavicle. I hope that I don't have any "breaks" in the skin. Although I probably will considering the way I feel. My RO actually spent about 10 seconds with me last time. Per second he makes a heck of a lot of money.
I don't watch paint dry anymore. I watch hair grow. I'm 7 weeks pfc and aside from a little fuzz and a 5 o'clock shadow on my head, there really isn't much growth to speak of. Yesterday, I dreamt that my hair grew shoulder length overnight. Not that I'm obsessing or anything!
I still have about 1/4 of my lashes and brows thanks to having inherited my father's bushy brows lol. And I'm still almost unable to climb stairs. My knees, oy my knees.
Otherwise I'm fine. So glad to see the light at the end of the tunnel. Know that I'm sending Jan hugs to all of you.
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Thanks Melclarity! Glad to know I am not the only one experiencing this fatigue. I've had fatigue in earlier rounds, but I think it is being out of breath that scares me. I will talk to my MO about it next appt.
I went to a marathon clinic today (planning to walk the Honolulu Marathon for the 2nd time in December) and i was congratulated by three people for being a survivor! One by a man fighting metastatic melanoma since 2008. He looked great, and still running--what an inspiration.
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Been off the boards for a while and trying to catch up with everyone. I'm 5 weeks PFC and still experiencing fatigue, so glad to hear that others have this going on as well. It always makes you feel better to know you're not alone. On the plus side, I do have little, tiny hairs growing out of my head. I never totally lost my eyebrows and eyelashes although they thinned considerably, so hopefully, they too will be thickening now.
I will start radiation tomorrow after two different sessions of lying on the table half-nude while people drew on me,took many pictures and said repeatedly "when you're ready, take a deep breath, then hold." NOT looking forward to the grind, but glad to be on the road which has an end.
Been measured for my compression sleeve and gauntlet which I should receive in April. The size of my arms was up from the previous measurement, so I'm doing manual drainage exercises now daily. Hopefully we're on top of things - just worried about what radiation will bring.
Peggy, hope all goes well with your house sale and buy. We moved close to our son about 4 years ago when we got off the road from our RV lifestyle, and it's been really nice, although I do miss the RV traveling. We went with a much smaller house than we'd owned previously and have never regretted it (after all, we'd been living in an RV for 6 years - so it seemed huge at the time!)
To those of you just starting the BC road, good luck and stay positive!
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Yes on the fatigue, I called it concrete legs, felt like my legs were dipped in concrete. It finally went away for me. Just hang in there!
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Jan and Brit, glad you checked in. Jan, don't hesitate to ask for a break from TX if your skin gets bad. My RO switched things up when I started peeling midway.
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Thanks Italychick! I love that term, concrete legs. Yes, that's what it feels like!
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614- sorry to hear about your daughters struggles. Hopefully she can chalk it up as a life lesson. My daughters are 21 and almost 23 and they have been through a few of those. It's hard, but it does make them wiser:)
Andy- 614 gave you solid advice. If get in to see a genetic councilor ASAP. The test takes 2 weeks to come back. Then go over the results with your mo and bs. That testing will be a huge help in which direction to go in. My grandmother had BC and I had the gen testing done. Came back negative. But if it were positive, then I would have had a double mx. But, I had an lx and SNB because the risk of reoccurance was so slight with mx and lx. Like 614 said... Once they're gone, they're gone.
HH- I'm so jealous of your gardening day with dh! My dog and I love to go to the local nursery... It relaxes me so much but hits him hard at the register lol!! I just don't know what I'm going to do with myself this spring and summer if I can't garden:( can I wear a mask and gloves?
Pink- happy to hear that you are seeing a pt for your swelling issues. But movement is so important. I had some cording and it started moving down under my breast! I was stretching and massaging it in the shower this weekend and it snapped free! I heard it and felt it. Pain is gone and cord is shrinking;) Keep on top of it!! I had great movement right away, but I was constantly stretching and lifting that side.
Italychick- GREAT news on the MRI! I also have the concrete legs. Actually said that very same sentence to my husband yesterday. Just sucks because I'm generally so active.
Peggy- what a gorgeous tree! We have a magnolia and dogwood here that are beautiful too. So I understand how hard it will be to leave it. But you can start a new tree with your new life! There's a beautiful tree that lives in colder climates called a Forest Pansy. See if it might work in your new climate;)
Hawaiimom- congrats on finishing up!
Brit- good luck starting rads:)
Elenora- good luck with the ekg results. Maybe get another one as a second opinion? And I'm knowing all too well about people that I'd least expect to come out of the woodwork vs my "closest" friends. It's eye opening, but happy I've weeded out and made new friends;)
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Jan- rads is next on my list after my last two chemo tx's... I hear that cool, wet cabbage helps a ton. Like a bra cup! My mo said I'm looking at 4-6 weeks daily rads. Haven't met with an ro yet... Dana farber likes to take things one step at a time. With an lx at the 9 o'clock position and SNB... Will I be looking at whole breast? They found extensive LVI during lx and cancer cells traveling over to my nodes...
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Jan and Brit, good to see you!
Interesting piece in today's Boston Business Journal online.
Link: Brigham cancer research: Angelina Jolie was just the tip of the iceberg
Excerpt:
Researchers at Brigham and Women's Hospital say they have uncovered a startling truth about breast cancer treatment: more women are proactively opting for double mastectomies, though it isn't helping them live any longer.
Researchers from the Boston hospital reviewed data from nearly 500,000 women with stages 1-to-3 cancer in one breast and tracked their treatments over a decade. They said the number of women choosing to remove both breasts tripled, from 3.9 percent in 2002 to 12.7 percent in 2012, though they did not have better survival rates from the cancer than women who only had a less-invasive lumpectomy to remove the cancerous tissue.
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Thanks for sharing Peachy! That's exactly what my mo and bs surgeons were saying to me.
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Thank you for sharing Peachy, my surgeon and oncologist said the same thing, and I was quite happy to have a less intrusive surgery and keep my breast…but I must admit on a lot of bulletin boards in groups I'm in, so many women with less advanced or similar diagnosis/pathology/brca- to mine had a single or double mastectomy, and it sort of freaks me out and makes me wonder if I should've been more aggressive!
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Hi, HH. I do Vinyasa (aka "flow") yoga, where movement is coordinated with breath. For some reason, it just works for me. The first class I took, I couldn't believe the hour was over so quickly!
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MLP3 and Peachy - I'm getting treatment at Dana-Farber too - I love my team. The BS said the exact same thing - I need a re-excision, and an ALDS, but there's no need for a mastectomy since my last surgery left me cosmetically fine. I don't meet with her again until April, but frankly I'm just going to do what she recommends. What's unsettling is that the hospital where I got my lumpectomy close to where I live initially recommended mastectomy and no ALDS after my diagnosis. Makes me wonder if hospitals are also pushing that concept of mastectomies for peace of mind.
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fightergirl, my surgery was at Faulkner. In the initial consultation my surgeon outlined the lumpectomy procedure, and then said that the other option, that she did need to mention, was mastectomy, although the statistics show that it is not more effective than lumpectomy + radiation. I've since expressed my exasperation to my MO at D-F about celebrities, e.g. Amy Robach and Sandra Lee, getting bi-lateral mastectomies for early stage cancer without any mention of a genetic component. She said that some insurance companies are now refusing to cover them. In my opinion, it sends the wrong message that it's the best way to fight any and all breast cancer (By comparison, Angelina Jolie was very clear about her BRCA being the reason for her BMX). As LTF noted, it's what plants a seed of doubt about whether we've chosen the right path for treatment.
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*chants to self* I will not let a client get me stressed, I will not let a client get me stressed, I will not..... *sigh*
I received my Oncotype DX results last week: 15
although this is considered "low", I remember someone mentioning that the chart/numbers were changing and that low is considered 10 and below? The Oncotype test was also done on my biopsy results (not the tumor after surgery), I wonder how accurate it is on the biopsy as opposed to the actual whole tumor? Thoughts?
My MO nurse called and told me my treatment plan is staying the same (neoadjuvant hormone therapy, surgery, RADS, continue Lupron injections and Tamoxifen). Remembering the above (what someone mentioned about the new levels of Oncotype considers low to be 10 and/or below I asked the nurse (I was in shock to get the results, I was at work in a meeting) "Do you think this is low enough?" and she said " I KNOW ITS LOW ENOUGH" in a not so nice tone
She probably did not mean it that way, but I never get the warm fuzzies from her and it is difficult sometimes. She is the nurse that gives me my Lupron injections 
Wishing everyone a good start to the week! Welcome new ladies!
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LTF, I wouldn't have opted for the BMX, except that I was found to have 2 gene mutations which cause breast cancer and other cancers. My sister had an early stage breast cancer about 3 years ago and she had LX, plus rads. She says she never even considered a full MX and has been very happy with her decision.
Just wanted to check in for a moment---we had a lovely time cabin-camping this weekend. We used to tow our RV around, but in the last 2 years we've had to park it due to DHs health (and mine.) It was so relaxing, just what I needed after my hectic work week.
My wounds are healing really well. Last Thurs I could pull two edges together. Today, the edges have grown up so well that I can't bring them together at all, if you can picture that. The larger wound (right side, zombie breast) is about 1" x 3/4" x 1/4" now. That's down from 3-1/2" x 3" x 2" on Feb. 19, when all this mess started. The one on the left (good side) is still draining and the pocket is still fairly large, but it's not infected. The NP debrided both wounds pretty well today. So, onward and upward!
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Ayr, the new numbers has low as 10 and under. I am 13 which is considered low moderate now. I have seen women in the low to mid 20's not have chemo recommended so I think you are fine with that number. Poodles, hooray! So glad you could enjoy yourself and that you are healing well finally. I tried so hard to have just an LX. Now I am on the fence with finishing the job and getting the right side removed. What these women don't understand is bmx doesn't decrease your chances of recurrence by much if at all and you have the nightmare of reconstruction to deal with. I do agree with some that get mx to avoid rads. If you have left sided breast cancer and heart problems it is better to avoid radiation.
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Molly: Where can I find the new numbers (chart)? I would like to be able to refer to it at my next appointment.
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Fightergirl- my surgery was at Brigham and Women's via Dana Farber. Neither my bs or mentioned mx, until I did and they both did not recommend it(separately). My health insurance is excellent, so I know that my tx plan isn't based around it.
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When I was first diagnosed and had my initial appt. with my surgeon at the Kellogg Cancer Ctr. at NorthShore Evanston Hosp. (the N.S. system is part of the Univ. of Chicago and also Mayo Clinic-affiliated), she asked me if I would be willing to participate in a Mayo “decision-tree” clinical trial. It was a no-brainer--no experimental drugs or treatments, no risk of being in a control (placebo or std-of-care) group. I was shown videos and given printed materials to review before each stage of treatment: type and extent of surgery, chemo vs. no chemo based on OncotypeDX (if suggested), types of radiation, and finally endocrine therapy. Each video (in-office pre-surgery, via patient portal link thereafter) explained various options, pros & cons, and statistics. After each video, I answered a questionnaire as to what my initial treatment decision had been and whether the video had reinforced it or changed my mind. In the surgery case, I had never considered mastectomy, given the size (both absolute and relative to breast size), location and histology/cytology of the tumor (at least at the time of biopsy results), as well as my desire to minimize complications (anesthesia risks correlated with length of surgery, drains, infections, pain, recovery time, etc.). My surgeon went over the video with me, explaining that mx carried half the statistical risk of recurrence compared to lx +rads, but we were talking about 6% for lx + rads vs. 3% for mx. It was also explained to me that without a positive BRCA test (which at the time I didn’t think to ask about despite my ethnicity, because of my age and lack of family history), the risk of contralateral cancer was extremely low--and whether umx or bmx, the survival rate for both mx and lx + rads was identical. Moreover, though mx usually does not exempt one from rads afterwards, there was no guarantee that I wouldn’t end up getting rads anyway. That--and the finality of losing a breast (whether or not followed by reconstruction) definitely cemented my decision to go with lx + rads. My surgeon beamed and said “I was hoping you’d say that.” (And she happens to be a pioneer in nipple-sparing mx).
Afterwards, both when I began here at bco and ran into friends who are bc survivors, I was surprised to find so many women opting for bmx--despite no genetic reason for it and despite tumor size, grade, and type--even DCIS tumors measured by mm rather than cm. “Peace of mind” seemed to be the reason most often given (except for those who had multifocal tumors, especially in both breasts or small dense breasts). But I decided that I would have no more "peace of mind" considering the risk of recurrence or needing rads anyway would always be in the back of my mind. Another reason cited for bmx rather than umx or lx was a desire for symmetry--and that seemed more understandable to me for women in whom lx would dramatically alter breast size and/or shape. Much easier to get symmetrical results reconstructing both breasts rather than matching an intact healthy breast.
But never did I harbor any doubts that I was under-treated surgically. As to any changes in Oncotype classifications, I brought that up to the facilitator (the head survivorship nurse) at last week’s bc support group meeting. She said that was based on one isolated small study, and that a score of 16 would, even if reclassified as “low-intermediate,” militate against chemo given the hormone+, low mitotic score and HER2- nature of my tumor, as well as my age and comorbidities. She said the reason that data for the 11-30 score arm of the TailoRx trial has not been released is that there haven’t been a sufficient number of recurrences yet, especially in the 11-17 group, to draw any statistical inferences. Sounds like forgoing chemo was a wise roll of the dice for me. My MO had said that even before ordering OncotypeDX, she was “90% sure” she wouldn’t be recommending chemo--and that the only factor placing me in that ‘gray area” was my tumor size. Had it been <1cm, she wouldn’t even have ordered the test.
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Thanks LTF, Molly, Peachy, Poodles and MLP3... it's good to hear the stories and how you went about the process.
Peachy and MLP3 - Technically I'll be getting surgery at Faulkner via DF.
Genetic testing came back fine (one vague variation for colon polyps that wasn't very insightful.) Molly - I need rads ANYWAY, no matter what. Stupid lymph nodes. So that's not a deciding factor either. But that's definitely a good thing to think about. Luckily, insurance is a non-issue. Although, now that I think about it, if I were to get additional surgery, I'd technically pay for it less this year since I already met my deductible. But it's always something, isn't it? I'm still thinking "less is more." In this case, the only variable that I can come up with is that if something does come back, it will be harder for reconstruction because of radiation. Getting mammograms every six months doesn't seem to bother me a whole lot either, at least not right now. LTF - So true, mine is locally advanced, and I wonder the same - will re-excision be enough? Then again, I am on deck for a definite ALDS. My issue is systemic, and frankly at Stage III, I'm more concerned about mets than a local recurrence. But I try not to think about that as much anymore and just concentrate on this as a life-phase to get through. Kind of like pregnancy.
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After I posted earlier, coincidentally this BCO featured article about Amy Robach showed up in my Facebook newsfeed. There's that "peace of mind" thing again, ChiSandy! This is particularly striking for me, as I was also stage II, node positive. Even after the surprise node discovery and need for re-excision because margins weren't clear, there was NO mention of mastectomy.
Discovery of a suspicious lump led to a stage II, node-positive breast cancer diagnosis, followed by a double mastectomy, which was her choice in order to achieve what she described as "peace of mind — to drive the potential for recurrence as far away as possible. - See more at: http://www.curetoday.com/articles/tv-anchor-amy-robach-delivers-riveting-keynote-on-breast-cancer-survival#sthash.7GXdZEXb.dpuf
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Molly, both of those articles are excellent. Thanks for sharing the links! Now I see that my score of 26 is "the new high". They discussed all this at the tumor board where they reviewed my case. My rads are over first week of April, so I imagine I'll start my chemo sometime in April.
Ayr, that nurse has gotta go! How rude. You have every right to discuss your score in detail and be informed of the latest study data. What was your onco score on the biopsy? With the tumor, I think the Onco lab grinds up the sample and thus gets readings that are representative of all the cells. So I would guess that more cells equals better accuracy.
Poodles, I'm delighted to hear that your wounds are healing well. I need some cabin time too! I'll even settle for a tent. Do you get a local for the debridement?
HawaiiMom, I have a friend who got very out of breath on chemo. I think it finally resolved. I don't think they ever found a specific cause.
MLP, I think you will have whole-breast rads and possibly boosts to the tumor bed, but you will probably not have your lymph nodes radiated since no disease was found in them. That makes your radiation field smaller and you may not get the severe burns under your arm that some get. All of this is a guess based on what my RO told me and what I am getting. I'm halfway done today! I am doing lots of gardening with gloves. I'm not sure what the big deal is. For me, cooking and washing dishes is statistically more risky than gardening. I think I've cut my good hand three times since surgery. Luckily my bad arm is relatively unscathed.
Fightergirl, I think that some studies show that radiation of the lymph nodes is as good as removing them, with less chance of LE. I'd have to find my reference for that. But it may be one reason your first place did not recommend ALDS. But why the mastectomy, I don't know.
Peggy, glad you have chosen your new home! It will be fun to finally be moved and start the settling in process.
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