Lumpectomy Lounge....let's talk!
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I'm a newbie. I didn't have clear margins when I had my first excision, so I came back 2 weeks later for a second go-around, and not only did I have clear margins this time, the pathologist didn't find ANY cancer cells in the specimen!
Is that wild or what? I'm sure glad I went back, and my surgeon probably wishes he'd cut a little more out the first time but hey, that part's all over now.
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Welcome, thesedays!
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A few pages back someone said they had a small pimple like point at the end of their incision. I had something similar and it turned out that some of the dissolving sutures weren't so dissolving, especially the knots! The surgeon clipped a few off and over time a few more worked their way out, un-dissolved. So if it looks like you are sprouting a gray or white hair, it might be suture material. If you do decide to start gouging at something with a tweezers (which I did) be sure not to yank hard on anything you grab. I tell you this from experience. Because apparently some of those internal breast stitches are attached to your face and yanking one hard will make your eyes water and nose run at the same time.
My lumpectomy was 7 months ago (about) now and I still have pain in this boob. Sleep on my stomach? Not a chance. Feels like I'm lying on a rock. But I cannot tell what is pain from surgery or pain from radiation. Surgery leaves scar tissue and radiation has an effect on scar tissue. Kind of a double whammy. After surgery I worked hard to get mobility back in that arm that had the node removed. I was feeling pretty limber and flexible heading into radiation. Not so limber and flexible now and have pains all the time, weirdly out along the edge of my shoulder blade. In the lovely area I refer to as back boob. Right along the edge of the bone. I suspect lymphedema and there is some information to be gained about possible pain and weirdness with the boob by reading the lymphedema pages.
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Hello All,
Thesedays, did you not have to go through radiation or chemo? I see you have already started tamoxifen. What was the grade stage of your cancer? I too did not have clear margins, had surgery almost two weeks ago and won't know the details from it till Monday.
Runor - I am sorry to hear you are still in pain. I swear taking the lymph nodes was more painful than the two surgeries to remove the cancer! I still have a lump at the incision site that can get quite painful.
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May I ask how old you are? Standard approach is almost always boilerplate recommendation by docs for radiation and anti-hormonal therapy, but there is increasing data that older women with small low grade tumors and clear nodes and margins do not gain much extra life expectancy if any with radiation, and it can have more side effects in them ( more fatigue, heart and lung damage, more tissue injury, lymphedema), not even counting thr time commitments of usualky five days a week for several weeks. So, many are just doing lumpectomy with or without anti-hormonal therapy and skipping radiation, just follow mammograms and exam.
. Be sure you read other parts of the forum about radiation ( the successes and the horror stories) and ask about side effects, which are downplayed by radiation oncologists because they all push " standard of care" You want individualized care, not doc-in-the box.
I may forego radiation because my autoimmune disease, fibromyalgia, PMR, and RSD, ans abnormal EKG, and already hacing chrinic fatigue and focus problems at age 63, may increase my risk of unacceptable side effects. If I were young, might go along, Am still talking to docs and researching. I need to be able to be intact enough to go back to work
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Chronicpain - I’m 68 and not afraid of radiation. (Petrified of chemo, but I’m not on the worse heart bad drugs at least). I had a bypass 3 years ago, have hereditary heart disease, but going through all yards of this nightmare. I talked to my radiation oncologist for 45 minutes and she was wonderful in explaining that I would be in a face down radiation machine that avoids the beams hitting the heart. There’s also some kind of “hold your breath” type process too, but it sounds hard to use. The face down machine will be somewhat uncomfortable, but no worse than the MRI deal. That was nothing other than holding still for an hour. Because of heart disease I probably only have 15 years at most. Don’t want to live much longer than 80 anyways. However, don’t want to die of cancer either in 2-5 - 10 years. No doctor can predict your life expectancy anyway. It’s really up to God. Good luck in whatever you decide.
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Thesedays- I too had the surgery twice. From research I've done its a 30-40% chance of happening. I'm all clear now too.
And someone mentioned pain from lymph node incision is more than the 2x breast incisions. YES, me too. I started back at the gym on Monday, even stretching in downward dog position for warm ups - that under arm scar stops a full stretch.
I have to add the numbness and burning sensation, that ran from my elbow to my armpit, has diminished. It had felt like a triceps muscle overworked. Its now about 3" of annoyance.
I'm waiting for my Oncotype score. I should have it in another week or week and a half. Then its either chemo or on to radiation. I've meet with RO and set up appt for mapping in the hopes of a low score on Oncotype. For now, it's back to waiting for results, and hoping for the best.
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I was 64 when dx'ed, with a small Grade 2 node-negative tumor and clear margins, "high & outside" on the R breast. Because of that I was eligible for the short (16 higher-dose treatments) targeted-to-the-tumor-cavity radiation protocol. Had no fatigue, skin irritation or pain--just some temporary breast enlargement.
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CindyNY We have a similar diagnosis. I just received my oncotype score on Monday so I am heading for radiation and will not do chemo. I have appts Mon and Tues with radiation oncologists for their opinions.
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To save society money, as we continue to socialize medicine, more and more accountable care organizations and Kaiser are farming tasks away from doctors down to nurses, insisting they are just fine and as good as doctors in their judgment and training and cost less money. It frees up more tax money to spend on other people, e.g., the uninsured, Obamacare and Medicaid recipients etc. Patients have less and less choice in the matter even if they have been paying for years for private insurance, unless they are someone important or have pull.
Nurses are even doing specialty consultations in many places, e.g., at the VA, so when an internist asks for a consult by a board-certified oncology or cardiology specialist on a tough case, he often has to settle on an electronic opinion or even consult cancellation decided by and managed by a nurse with the doctor never seeing the patient unless a procedure is needed. So just having a nurse tell you you are fine instead of a doctor is not a reach, in our brave new medical world.
We all have to get used to having nurses and physician assistants, direct our care more and more, unless we are important people and can hire someone for pure cash, e.g., Michael Jackson or Hillary Clinton, LOL. When I had skin cancer surgery, Mohs, the doctor never checked my postop wound, not even a nurse did, just a medical assistant. I have a big scar a year later on what was a 1mm tumor and have to wonder if the doc had done his own wound check if he might have spotted some warnings.
We should all just be happy to get any care at all, is the more common message we hear. You are fortunate you were able to push through a doctor visit, though that abilitymay end.
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gigibee - that's great news! I'm hoping for the same.
ChiSandy - my RO is planning on the Acclerated Hypofractionated WBI for me as well (16). All depending on that Oncotype score.
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chronicpain, you are confusing "socialized medicine" with "managed care." The latter is the diametric opposite of government healthcare--it is bottom-line driven by for-profit HMOs and especially insurance companies. The downsourcing of medical tasks to NPs and PAs is done to save the provider organization--a commercial entity--money by maximizing the number of patients treated and minimizing the overhead. (Also, it frees up MDs and DOs to treat more serious ailments instead of being bogged down in paperwork and tasks for which NPs--even RNs--and PAs are competent and qualified). Also, you incorrectly lump in "Obamacare" among those whom I presume you believe are free-riders. ACA-compliant plans are administered and sold by....wait for it...insurance companies. They are NOT "welfare."
As for Medicaid, if you have to enter a long-term care facility towards the end of life, you'll find out Medicare doesn't cover it beyond the length of time necessary to convalesce after an acute illness or rehabilitate after surgery; and long-term-care insurance has gotten extremely expensive with much narrower coverage--assuming insurers are willing to sell it to you or that by then it hasn't gone the way of the dodo. Unless you or your kids have enough resources to pay 100% out of pocket for your nursing home, you will have to "spend down" until you qualify for Medicaid, which will then cover the home 100%. Lest you think only the undeserving poor & cheaters do this, about half of all American seniors living out the rest of their days in skilled nursing facilities have had to resort to Medicaid. As for assisted living? You're on your own. No government program, whether Medicare or Medicaid, covers that--and long-term care insurance polices which used to do so now cover only a fraction of the cost, with premiums as high or higher than that...if such policies are even obtainable.
We all complain about health care costing an arm and a leg, which in turn raises insurance premiums. The main drivers of health care costs are unnecessary procedures (driven by fear of malpractice suits but also to generate revenue) and duplicative purchases of expensive diagnostic equipment such as MRI machines, CT and PET scanners and state-of-the-art "birthing centers" in order for one hospital to compete with another (or others) that have them. (Yes, even cancer centers--not every hospital needs one if there are others in the area, but it is often a cash cow). Not to mention the advertising done to let the public know about a medical center's amenities. (You can't drive on an urban or suburban Interstate without seeing a bazillion dueling-hospital billboards).
The definition of "managed care?" "We don't care, but you'll have to manage."
The overtly political tone of your post (especially naming names) is in violation of BCO forum rules--political discussions are strictly prohibited on these threads & forums. (Private-message the Moderators to find out where on BCO you can freely so engage). I presume you did not know this, which is why I gave you the benefit of the doubt and did not click "Report this post."
BTW, I am the wife of a cardiologist who has been in private practice for 35 years. Just sayin'....
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Thank you, ChiSandy, for responding to chronicpain. Nice job.
If I might add... I write grants for a small, private, healthcare college that focuses primarily (but not exclusively) on nursing. In America, the reality is that we have a shortage of healthcare professionals which will be exacerbated by aging baby boomers who are leaving the workforce and requiring more healthcare. HRSA is working to shift the focus so that nurses take a stronger role in primary care - thus improving access to quality healthcare and services. Nurses are amazing, as a group, and are absolutely qualified and capable of taking on many of these tasks. Please recognize that they do not do so without specialized training.
I am thrilled to have nurses who specialize in oncology to help address my personal medical needs. They work hand in hand with my doctors, and they are amazing, helping ensure that I receive the BEST care, not anything I would consider substandard. They help preserve my choices and make sure my voice is heard.
(FYI - My dad was a plastic surgeon. Mom is a retired nurse, and husband is a retired anesthesiologist.)
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Let me just start by saying that I have bipolar disorder, soooo...
I am thoroughly SICK of taking all these meds. Back in August I decided to start weaning off them. I have gotten completely off three psych drugs, plus gabapentin for pain. Only one more drug to go! This is saving me a ton of money, let me tell you!
Unfortunately, I'm pretty sure my depression is coming back and it makes me so mad! I don't want to take all this medicine! I was doing so good until Thanksgiving, even though I've had some anxiety. Of course, losing my mother in June and selling our house has complicated everything. Thanksgiving just highlighted the fact that my mom is not here (she got sick last year at Thanksgiving), my adult kids bailed on me for stupid reasons, its getting colder and darker, and we're closing on the house next week. On top of that, the new RV we just bought, the one we're planning to live in for a year? My DH crashed into the side of it while moving it to Florida, so it is sitting at Camping World in Panama City waiting for all the parts to fix it--which could take another month! Thankfully, we haven't sold my mother's house in South Alabama, so we may have to move there while we wait for the camper to get fixed. And Christmas is coming. I feel like my nerves are tight as a bow string.
I really, really don't want to go back on these meds. But I also really, really don't want to have depression. Today I got so upset because I couldn't find crumpets! Seriously. I drove to Trader Joe's, Whole Foods, Sprouts, and the Queen's Pantry (a British shop) and NOBODY had crumpets! It's grey outside and I just wanted comfort food. I decided to make pork chops for dinner and the damn things had gone bad! Stinky pork chops!
I know what I should do. I SHOULD call my psychiatrist and get in to see her next week, before we leave town for two weeks. But I know she's gonna want me to start back on all these drugs. I keep thinking I can just power through this, and maybe I can. I still have all my prescriptions, so if things get rough I can re-start the meds. I just want winter to be over...
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Poodles damn. I don't have any advice. You know what is best for you. I can understand wanting to get off all your meds. But being depressed is not good either. Ugh. I'm sorry things are so crap. You have had to cope with so much the past couple years it's not wonder you feel strung out. DH, mom, kids, BC, selling the house. That's more than enough to break anyone but you are still standing. I'm right beside you to give you a shoulder to lean on. Take a deep breath and see if you can find a way to relax. Easier said than done, of course. Besides sending love and hugs, that's the only thing I can think of
HUGS!!
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Mustlovepoodles - are you out of the pills now? Maybe take them to get you through the stress? Then when things calm down, try weening off. Holidays are stressful. Losing your mother and selling a house is all very stressful. All in same year. Pace yourself - take a big breath - don’t let those crumpets ruin your day. They aren’t worth it to ruin your day like this. You’ll find them eventually or something else to rock your day. Try to treat yourself with something else you love.
I’ve been wanting a small box of Whitman’s chocolate- it’s not heart heathy, but I don’t care - may have to get one for my own Christmas gift!
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Thanks for letting me get all that off my chest. Yes, I still have my medication bottles, so I can re-start the meds if I need to. And I have some Xanax that I use once in a while. Maybe I will just restart one of the drugs and see if that helps. I do think that part of this is the paradox of having both not enough time and TOO much time on my hands. The movers come next Wednesday. We've already moved about 75% of our stuff out. So the things that are left are either going into storage for a year or they're going to the thrift store. I've begun packing things, so I have numerous boxes in the living room with towels or kitchen gear or Christian's stuff or winter coats. I have lost and found important documents several times this week. I just feel like my whole life is chaos right now.
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Hello! I was just diagnosed last week at 33. I am waiting for my genetic results (should have them next week). Assuming I don’t carry any of the genes my surgeon is recommending a lumpectomy with radiation. He says I have a “small, favorable cancer with a well placed tumor.” My tumor is upper quadrant, outer edge, a few inches under my arm pit. He says he will do a mastectomy with antipope sparing immediate reconstruction if I wish (hoping for direct to implant but tissue expander as a back-up). I will need chemo.
Can anyone give me some advice on how they decided on lumpectomy over mastectomy? I am getting so many opinions from people who haven’t been through it, and some who have but seem to have had worst case everything. Thank you!
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Poodles, always glad to listen. I know what you mean about not having enough time yet too much. It will help when you can actually get moved out of your house onto the next phase of your life!
ToughCookie, Welcome! Glad you found us. When gals ask about lumpectomy vs mastectomy one thing we all point out is that you should start small - meaning a lumpectomy. You will still have your breast and that is a big deal. If down the road things change you can still have a mastectomy (or if genetics come into play). No matter what reconstruction is done, you will not have your breast after an Mx. Even gals who have wound up having an Mx after an Lx are glad they started out with the Lx. Your diagnosis certainly seems to favor an Lx.
I think most of us have an initial reaction of "cut it off." But that truly isn't necessary a lot of the time. Others will chime in with their experience. Here's hoping that the genetic results are good. Keep asking your questions!
HUGS!!
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Tough cookie, my stats were somewhat similar, except mine was PR-. I initially went with lumpectomy because my BRCA tests were negative. Later, a more extensive test turned up two more rare gene mutations and my MO strongly advised BMX (i also have extensive family history of BC. ) Otherwise, i would have been most happy to sail through LX, plus radiation like my sister did. Instead, i drew the short straw, ended up with chemo, sepsis, infections, seromas, etc. I had a terrible time healing from the BMX, about 16 weeks. My scars are pretty bad, not at all the result I thought I would have.
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Tough Cookie: I had a lumpectomy in March. In hindsight I wish I had a bmx. I have Lobular not ductal breast cancer. It's sneaky and often doesn't show up in mammograms. I don't have much peace of mind that all of it is gone.
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Mustlovepoodles... I know taking lots of medication is a drag, but depression is no joke. My husband and adult daughter both suffer with chronic depression and anxiety, so I am familiar with this issue. I would take the meds - understanding that they take a good month or longer to become effective and build up in your system, I would not wait any longer. And, I would make the appointment with the psychiatrist to talk about alternatives that perhaps include fewer medications.
Good luck to you!
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thanks, Meowmmy. You are so right. Depression is no joke. I was hospitalized twice in 2009 for severe depression. It took over a year to get my feet back under me.
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Thsnk you PontiacPeggy. That is a very good way to look at it. My main concern with a bmx after a lumpectomy is that I will need radiation after a lumpectomy, limiting my reconstruction options if I then need a bmx. They are trying to tell me lumpectomy plus radiation vs mastectomy have the same rate of recurrence.
Mustlovepoodles, thsnk you for the info! How long ago did your sister have her lumpectomy? I am getting tested for about 10 genes at once, so unlikely any sneaky gene will come out later.
Part of my concern too is that my mother passed away from blood clots in June, as did my uncle. My mom had them cut off blood supply other organs making some of them necrotic. She waan’t thr spécimen of health mind you. I therefore have an increased risk of blood clots. The more invasive the surgery, the higher the risk. I believe the risk is less than cancer recurring however.
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"I therefore have an increased risk of blood clots. The more invasive the surgery, the higher the risk. I believe the risk is less than cancer recurring however."
Not necessarily, especially if you have preexisting CVD. The older we are at dx, the more likely that diseases of aging will get us first even after "only" lumpectomy+rads. Another thing to consider is that stroke or heart attack from a blood clot can instantly kill or permanently disable us, whereas a recurrence can be managed for years, enabling us to enjoy both quantity and acceptable quality of life. And a first heart attack is more often fatal in women than in men.
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Thsnk you ChiSandy! Great points for me to think about. My mother was 58 at diagnosis and an alcoholic, so increased risk of a lot of issues. I’m 33, rarely drink and am otherwise healthy (and no CVD that I am aware of). My mother did have a genetic bi-cuspid aortic valve heart defect that I didn’t inherit. So many options....
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trying to wrap my head around this, my original biopsy showed Her2+ (IHC method) my first opinion told me I would do neoadjuvent, 4 months of perjetta chemo to shrink the tumor, then lumpectomy, then 18 herceptin infusions, + rx tamox. I went with my 2nd opinion who said neoadjuvent was not appropriate given the small tumor size etc. Post surgery tumor was retested and came out Her2- via FISH and tested again via oncotpye, negative as well. Wouldn't my treatment plan have been totally incorrect with the first opinion ?and even the wrong treatment since perjeta is geared toward her 2+? Even if they would have retested her2 it would have been after 4 months of chemo I didn't need?
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Gigibee - that’s completely up side down with first diagnosis with the change in the HER2 +. Makes you wonder how accurate these tests are, but biopsies do change the diagnosis after any surgery.
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Silly question perhaps: are the surgery threads intended for those having umx or bmx and this is the place for us lumpectomy gals?
I am scheduled for a lumpectomy with sentinel node biopsy on 07 Dec. My tumour is in the 3 o'clock position, locatedon the side of my breast and maybe 3 inches from my nipple. My BS mentioned nothing about the nipple and I never thought to ask when I was in his office, but now I am now wondering how likely it is that my nipple will be affected by the surgery?
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Dancesmarti - my tumor was very close to my nipple, right behind at the 12:00 o’clock position. If your surgeon wasn’t concerned, and it sounds like it was located far enough away, then I doubt you have a problem, but never hurts to ask about it. Also, with my situation, it was a reduction lumpectomy that caused both nipples to be moved up. The cancer side was questionable and fortunately there was enough tissue spared to save it, but it had to be completely taken off. The nipple on the right was partially cut off, but better intact and not so beat up. It looks great, but just dont like the pointy look on the cancer side. It’s as if they left too much skin above it. If you poke the skin slightly above the nipple, it matches the other side just fine. So thinking that with a tuck, it could be fixed. I’m surprised they couldnt see that during surgery.
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