Lumpectomy Lounge....let's talk!
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Barbmak, sending good thoughts for your surgery today. Kim, sorry you have to go through this but it does seem like a thoughtful plan. Great approach to keep remembering that the goal is to "kick cancer's b--tt"!
Loungekat, Gardennerd and KB870 have already said this, but a "partial mastectomy" is major surgery with full anesthesia that requires time to heal. There are also the very real practical, logistical issues about finding a bra that will provide support you need while the swelling is subsiding, etc. (I'm having some of the same issues as Gardennerd with finding the proper supportive bra to be able to function at work!) I expressed similar concerns recently when I had surgery (3/31 and 5/19) and the folks in this forum helped me to gain perspective and to reframe this. Requesting FMLA protects everyone. My surgeon told me for the LX and SNB to request 2 weeks off and for my more recent surgery 3 weeks. They said you can always go back sooner or return part-time (depending upon your work responsibilities). If your employer plans for longer time off, and you're able to make it back sooner, all the better. It does help to use the term "partial mastectomy" and to make it clear that your doctor recommended x amount of time off.
I've had people belittle my surgery. I've been learning that they tend to do for many reasons that have little to do with me. They all seem to be well-meaning. For some, it feels easier to think that this is now behind you and they don't have to worry about you and it's how they respond to challenges in their own lives. Some were colleagues who know of mutual colleagues who seemed to just jump off the gurney and glide back to work on roller skates!, so I was feeling very worried about seeming like I wasn't dedicated. Each of us has a variety of different characteristics in the job responsibilities, different characteristics in the size, shape, location, etc of our lumpectomy and SNB, in our general health, and in our lives (what else we're juggling), etc!! I've learned that each of us needs to take the time we need to be able to return to work in a condition where we can feel up to doing the job. That's especially true for a stressful job or one that requires equanimity in dealing with challenging situations. Take the time you need so you can be in better shape. Some of us tend to take less time off and then discover that in the long run, the healing period took a bit longer. Hoping your healing goes smoothly and quickly.
Thanks for all the advice about gauze, tape and bras! This is all tremendously helpful, as are the comments from folks who also find themselves instinctively holding or massaging their breasts when they feel pain. I'm so relieved that I'm not alone in having this instinct. Law, good wishes on finding a dress for the wedding! I'm hoping that you can find something that will feel good on. VelvetPoppy, was it you who suggested Awesome Breastforms? Thanks. And sending good wishes to all, for all you're going through.
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LoungeKat: That's why I like the term "partial mastectomy" like KB870 said. Lumpectomy does sort of sound like a cyst removal or a biopsy. They obviously have NO idea what it entails.Just being under general anesthetic knocked me out for a few days,feeling extremely weak and tired, while the pain was minimal, I didn't even use any meds after the initial surgery. The re-excision was deeper and more extensive. I tried the prescribed pain meds and they just made me sick, so was fine on Tylenol. I'm glad you took the rest of the week off. You did the right thing.
Barbmak: Thinking of you and praying today.
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Paris, nobody suggested oncoplastic surgery before I had my lumpectomy (and my cancer breast was even then slightly smaller than the healthy one). The only mention of it came three & a half weeks later when my SNB incision ruptured and the axillary seroma beneath it burst and leaked. My BS was in the OR at the time, and when I demanded of her NP that the incision be sutured (she insisted I needed to pack it several times a day so it could “heal from the inside out"), my BS' partner came in and did it. He said that the weight of my “very large" (his word) breast pulled the incision open after the steri-strips came off and would likely prevent healing unless it were sutured. As he worked on me, I asked whether a bilateral reduction should have been performed, and he replied diplomatically, “Well, you weren't my patient." When I followed up with my BS and her NP, both said that reduction would probably result in more seromas (and in my lumpectomy breast, perhaps granulomas or calcifications that would pose diagnostic problems down the road). I will say, however, that the cosmetic result from the lumpectomy my BS did was amazing. But for the fading small scars one wouldn't think that had been the breast with the tumor. (As mentioned earlier in this thread, I currently wear anywhere between—depending on mfr—40F and 42G; was 38 I before surgery, and in the few months following radiation, 40 I or 38J due to the enlargement of the breast seroma, which made both breasts, although differently shaped, the same size. My right one is once again the smaller one but by a full cup size).
LoungeKat, I was already retired from law practice when I had my surgery, but took two weeks off before I started performing music again (which involved driving). At the very least, you need a week and probably two or three to recover.
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Wow - what an amazing group of people you are. Thank all so much for your kind words and support. The encouragement and reassurance that my "partial mastectomy"
isn't something to be taken lightly and I have right to heal was just what I needed today so thank you all so much for that. Now I just need to patiently wait for the surgeon's call tomorrow night with the pathology report. The waiting really is the worst.Barbmak - I hope your surgery went well today. Also hoping your ride home is much more comfortable than mine was yesterday! I hadn't heard of the 2x a day radiation approach so curious to learn more about that. I've been told I have to do the 5x a week, full breast radiation option for approx. 6 weeks.
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Thinking good thoughts for your pathology report, Kat. Sorry about your rough ride home! Don't forget about the little pillow under your arm - I didn't think of it for several days and it really helps.
MJ
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I have sat here and stared at the blank page for some time. This whole discussion of FMLA makes me both sad and angry. Thirty years ago I was a state legislator when the idea of leave began to be talked about seriously. It passed in my state ( I remember lobbying a "good old boy" that maybe his daughter-in-law - never his son heaven forbid - might need time off to care for his grandchild) but 30 years later it's still not paid like it is in Europe. I know that enters into many people's decisions about how long to take off.
Obviously we all have different cancers and different circumstances. From surgery to completion of partial breast radiation was less than 3 weeks for me and I felt pretty good even during the rads. Although I'm retired, I think I could have worked part time. However, my HER2 status threw for me a loop and I couldn't have worked for at least a month while on Taxol as my neuropathy was so painful. Given that taxol is considered by many to be "chemo light", it seems to me that many will need time off for chemo too.
Which is a long way of agreeing with many here that a lumpectomy is major surgery and no one should be shamed into going back to work too soon but sadly, that may not be the end of the time you need off.
I hope for wonderful, supportive employers for all of you who are trying to juggle this. It really is one more stressor in a very stressful time.
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LoungeKat, those people who think that having a "minor" surgery is all that's necessary for "curing" your breast cancer, don't know a damn thing. And that's literally true. Most people really don't know and think that a lumpectomy is a breeze. Most aren't being insensitive, just uninformed. I must say that there was a lot I didn't know before I started on my own journey. Guess if we feel up to it, we should educated them. It's not minor surgery. We are never really cured.
But all that aside, welcome to the best forum on BCO! We're glad you found us since you'll get the information you want, lots of support, and a laugh or two. Please make sure to fill out your profile, then click SETTINGS (in the box on the upper right) and make each and every single thing PUBLIC. We do want to know where you live since we are likely nearby.
Taco, as you've discovered, nothing is easy or straightforward with BC. Each person has a slightly different path, reaction etc. My son just told me that when he came home to be with his dying father, my DH, he was penalized at work. He did not get a raise he was due. I was so livid when he told me a year and a half later. He used FMLA to come home and help out when I had my Lx and that apparently was okay.
HUGS!
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LoungeKat,
I had to have a reexcision after my pathology report came back and I was so glad I was retired and did not have to worry about time off. My tumor was up against my chest wall so I am really disfigured. At almost 4 years out I am just now thinking of reconstruction as like Chicago Sandy said one is smaller now and kind of perky and the other is old lady droopy. Took a full year for my seroma to reabsorb. Just this week I had a head to toe bone scan and the male tech said oh you just had a lumpectomy? I hate that word Just! Let's "just" take almost half of one of his testicles and see if he says "just". Only those who have been through this really understand. This is a great group who really understand. Glad you found us.
Jo
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Hey, Jo, looks like you’re the mirror image of me (at least from the collarbone to the abs).
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LoungeKat - its true the waiting is difficult. For myself, I will admit, I was not well informed about BC. And much of what I knew was very dated and so my lack of knowledge had me uneasy and scared. In my dive into it head first, whirlwind education, for myself there is one thing that I think you will appreciate. That is if your viewpoint was like mine. What was protocol decades ago are not the case in many ways. New treatments, newer drugs, more studies (thanks to all the wonderful women before us) have improved considerable. Over treatment was often the case. This is my awkward way of saying that we all certainly hope your pathology report is clear. And if it is not, there is a game plan for you.
Regarding the 2x a day radiation treatment, a person has to meet certain perimeters to have it. But if a person does meet the perimeters, the radiation treatment is internal, instead of external. It is called brachytherapy. There are two ( that I know of) devices they use. The Savi and the Mammosite. I think both sites provide educational material to explain.
Taco1946 - I think the intent for those that are being made to feel that lumpectomy is something you recover from in a few days, should have the support of those that have experienced it to assure them that a few days is unreasonable. Certainly, as you stated, we have different cancers and circumstances. It is a terrible feeling while you are trying to heal that you've been told you should be on your feet in a few days and it actually takes several weeks. I had that feeling when I had a gall bladder removed. While I was healing I kept wondering what is wrong with me? why can't I bounce back, like others. Come to find out, I was listening to the wrong people. I stressed unnecessarily of my inability to bounce back. And certainly some women have no choice and must go back to work sooner then they should as their workplace doesn't have FMLA and they need a paycheck. Talk about stress and trying to heal at the same time. I've not a bit of problem in using as much time as I need to heal. But then I'm in that over 50 cocky attitude that I've earned my benefits. For this forum I am here to support the person, not the workplace.
Peggy - Your statement, " It's not minor surgery. We are never really cured" struck a cord with me. The term minor or major doesn't seem to fit with me either way. Partial mastectomy is by no means equivalent to a wisdom tooth being pulled (minor surgery) and then it also is not something that involves major organs (major). Is there not a term that fits in between? But really what struck me is that . . . "we are never really cured". That is it in a nutshell.
Now for a more positive note: I had a few firsts happen for me. It has been three weeks from surgery and I had my very first FULL nite sleep in my bed. Bye-bye lounge chair, ice packs, additional pillows. Another first, I took a bath!!! Now it was a quick one as I still am healing from the cath incision for brachytherapy but it was full, deep watered bath. I just didn't soak long. Bye-bye sponge bath and showers with a bra as the girl was so uncomfortable. And today I went back to work. It was good to be back but I oh lordy was I tired this afternoon (took a nap). So to some this may sound minor but a full steady night of sleep, a clean body and some normalcy feels good. But as Peggy said, we are never cured . . . and so tomorrow I am supposed to get my OncoDX results and will find out if chemo is on the agenda or not.
To all make yourself number one priority, you deserve it.
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GardenNerd, while we are never cured, we sure can be NED (no evidence of disease). That works for me. You're right that there really isn't a term to describe our surgery that conveys what it actually is. We all know it is life changing.
Jo, nice to have you here again!
HUGS!
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Actually, there is a “middle ground” for radiation—besides the 2x5 days of internal catheter, or the 33 daly external whole breast protocol. I was surprised to find I met the parameters for accelerated partial breast irradiation (APBI): 16 daily hypofractionated (stronger) external treatments to just the tumor cavity and a small surrounding margin. Sometimes called 3DCRT (3-D conformal beam radiotherapy), it is also sometimes given the misnomer “Canadian protocol” (the latter includes not just APBI but often 15 treatments—or even 2x5—of whole-breast radiation). My RO had just finished participating in a study that showed APBI via 3DCRT confers just as much protection against recurrence and has an equal overall survival to the standard 33-treatment whole-breast protocol in women over 60 with tumors smaller than 2cm, node-negative, hormone-positive/HER2-neg., grade 1 or 2. More recent studies suggest that women over 50 with Stage IA, Luminal A tumors can also be candidates. Yes, there are side effects, but milder than the 33-treatment protocol; I had seroma enlargement (looked like my boob swallowed a softball), some radiation fibrosis (tanned, thickened skin) and mild reddening, but no irritation or skin breaks. In fact, due to the location of the radiation I was able to resume wearing underwired bras. In the ensuing year and a half, the seroma has steadily shrunken but not to the point where it looks like there’s a dent or divot.
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Sandy, I think that is what my radiologist was suggesting we go with "if" the brachytherapy didn't work out. They explained that a small percentage get the balloon inserted but it does not seat well. Air pockets. CT would identify if they could not proceed.
The APBI reduced complications of whole breast radiation with large breasts. And so this was the suggested treatment if internal radiation was taken off table.
I was on information overload at the time I heard about this. But it was reassuring that most all docs provided alternative solutions if this or that could not be done.
Something else that seems important to share. My RO, at initial consult, prior to surgery, was relieved to hear who my surgeon was. Through my week of treatments I learned of patients that had device inserted but could not proceed. RO shared that some surgeons just did not grasp importance of positioning in the breast. I was lucky. But for those considering brachytherapy I would inquire with surgeon how many successful ones they have done. AND I would ask RO the same question about the surgeon.
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Jo6202: Thanks for the laugh. I'm guessing he wouldn't want ANYTHING taken from his testicles!
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LoungeKat, and all..... First.... we simply cannot worry about the tendency of others (on the periphery) to either exaggerate or trivialize our surgeries, treatments and recovery. We need to carefully choose our close confidantes and let the other voices go.
I love the saying that all the noise comes from the shallow end of the pool. Very true.
After everything we are going through, the last thing we need is to feel judged or part of a competition. It's only a competition if both parties engage. I try to remember that. I choose not to be impacted by the words of others.
There are no valid opinions about your experience other than your own, and the few loved ones who make you stronger by being in your inner circle.
I also think back to my husband's vasectomy. No one told him to buck up or stop being a baby. He limped around like a pitiful invalid for a week.... after a procedure he was awake for and took place in the doctors office. That's just an ironic side bar.
The point is. This is your body, your cancer, and you are entitled to handle it in whatever way is true for you. That's one of the main reasons I appreciate the positive unflinching support ofthis community.
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On a personal note. I am in Day 21 of 30 Rad treatments. I suddenly am having issues with what feels like a dry or narrow esophagus. Trouble swallowing anything dry. And have a burning sensation there and in my chest. Like the kind associated with reflux.
I have read that this is not uncommon. I also have a dry mouth, dry nasal area and dry eyes. So I am using drops in my eyes and emu oil in my nose. And drinking LOTS of water.
But wondering if anyone has advice or something that helped them. I am thinking smaller and softer food and nothing that can lead to reflux.... in my case, dairy or acidic.
I will talk to my RO about it later today. But I often find more practical advice here.
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Robin, I went for a dental cleaning just before my rads started. He prescribed a special toothpaste as he said dry mouth can be a problem during rads: PreviDent Dry Mouth. I don't know if it's making a difference yet but I'm using it.
LoungeKat - I remembered something else. I was told not to drive for two weeks post-op. Makes it tough to drive to work unless you walk or have a chauffeur!
Off to #13 of 33 soon.
MJ
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My dental hygienist (when she assumed I’d be doing whole-breast radiation) told me I would need to use Biotene mouth rinse to combat dry mouth. I’m not surprised you feel some esophageal constriction, especially if the radiation field scatters above the clavicle. As far as reflux goes, I find dairy (unfermented) soothing. Acid, alcohol, caffeine, chocolate—another story entirely, especially if I indulge too close to bedtime. Maybe bisques and purees will be easier to swallow and get enough nourishment into you. (Dr. Vitamix can be a good friend).
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Renee -
I had the same issue. Very frustrating as a runner and being uncomfortable and inactive. I'm almost 4 weeks out of my lumpectomy/sentinel node biopsy and I will say it feels better with each passing week. I started rollerblading again 2 weeks ago and am finally back to light jogging. Maybe try elevating your arm a bit throughout the day. I was told keeping your arm above your heart helps. My tricep still is sore (I tried doing some dips the other day - MISTAKE), but som shoulder stretches have been helpful.
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After my lumpectomy, I began doing “wall walks” with my surgical-side arm & fingers, and when I mentioned that to the NP at followup, she warned me not to—that it could cause cording or LE. HAH! Had I not listened to her, and continued doing those exercises, I probably wouldn’t have gotten cording! (And guess what one of the exercises is that my personal trainer has me do daily)?
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Thanks all for your wonderful feedback!
I just met with my oncologist today, and he told me while my surgery results were good, I had lymphovascular invasion present and he recommends chemotherapy. I broke down after that statement, and can't even tell you what was said throughout the rest of the appointment. Has anyone else received this same news?
I've been adamant about not doing chemo since my diagnosis. I don't even know what LVI is. According to google, I have cancer in my bloodstream. I don't really know how to take this news...
Any experience with LVI would be much appreciated, or if there's a different board you know of that covers that, please let me know!
Panicking,
Hailey
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RobinLT I was interested to read your SEs. I'm not having any trouble swallowing, but my mouth gets dry and I'm drinking more water.
But the thing that started bothering me today was a reflux type of pain just below my breast bone. I have had this issue in the past, but not since my surgeries. Just wondering if that too can become irritated by rads. But since the pain then moves down to the waist area, I'm thinking it probably isn't related.
And I hit the wall today as far as energy. Wow,just overwhelming fatigue. We went to Costco and half way through the store I said I couldn't anymore, I was just too tired. Came home and fell asleep reading for about 15 minutes. It helped a little
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ChiSandy, I have often thought the same thing and that is one of the reasons I really enjoy your posts---I can relate!
Jo
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Hailey, I'm so sorry. I don't have any experience with LVI so I can't offer any advice. But am praying for you. Hugs!
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Pontiac Peggy, I am always lurking because this is my favorite thread. 😍
Jo
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Hailey, has your tumor been OncotypeDX-tested? If you have a stage IA (smaller than 1.5 cm, node-negative) highly ER+/PR+/HER2- tumor of grade 1 or 2, chances are very likely that the vast, vast majority of its cells are slow-dividing and thus not vulnerable to chemo—even those supposedly “in your bloodstream." Chemo kills only rapidly-dividing cells, among them hair follicles, bone marrow, mucosal membranes (mouth, digestive system) along with rapidly-dividing tumor cells. As a result, the side effects are major and the benefit had better be strong enough to be worth the risks. Before you agree to chemo or to get a port implanted, demand the test and insist no chemo decisions be made until you get the results. Get a second opinion if your MO refuses, or insists on chemo even if your score comes back in the “low risk" range. Some MOs make part of their overhead by selling patients the chemo drugs they must first buy, and there can be a financial incentive to overtreat. But many more MOs are old-school and prescribe chemo for certain parameters (LVI, a positive node, etc.) that recent research (in the past decade) has shown not to be harbingers of an aggressive cancer requiring chemo. They ignore or downplay the importance of genomic testing (which they don't purchase and for which they can't bill). When you're a hammer, everything looks like a nail.
I'm not saying to refuse chemo. I'm saying to make sure it's appropriate and will not do more harm than good—that's why you should insist on genomic testing. And make your MO tell you why he thinks your tumor is aggressive enough--even though grade 2--to warrant chemo. (Grade is made up of three factors, each assigned a point value of 1 to 3. One of those factors is “mitotic rate," which is how fast the cells divide. A mitotic rate of 1 means it's slow, 2 average, 3 fast. It's possible that if your mitotic rate was 3, then your MO considers your tumor cells—despite being Grade 2 overall—to be fast-dividing enough for chemo to work). BUT MAKE SURE YOU GET AN EXPLANATION, not just “LVI requires chemo."
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Oh, Haley.... I hate to hear this. I am clueless about that specific diagnosis. Just the name would scare me. And I know I would be beyond heartbroken if I suddenly learned I would need chemo.
The only advice I have is something that I had to learn with this cancer. My initial impulse was to do every test and every procedure, surgery, and treatment as soon as possible. That led to me second guessing some of my own decisions. Especially when a doctor lays out a plan you weren't expecting.
Take a break and some time. Do some research. Go back with lots of questions and then seek a 2nd opinion. Doctors are not upset when a major diagnosis or procedure leads to a patient seeking another opinion.
A dear friend who had a much tougher experience with breast cancer told me that. She said to ask every question I had until I knew what was right for me. And then once you commit to a treatment or procedure, embrace it with all your heart. Be grateful and know that you are being healed.
Hold onHailey! Stay in touch with the gals on here. They will lift you up.
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okay ladies, I need to be talked off a ledge. I've been fighting demons for a couple of weeks now. No specific trigger just ...tired. I found out last week that I have lymphedema from my PT that I finally got a referral too. After being told by 3 onc that I "probably" don't since January. But the PT actually took measurements and watched me move and "if it walks like a duck, no matter how unlikely..." A light case but another prize I didn't want to win. A couple of nights ago I felt a lump. Again. Very close to my original site. Not nearly as big. Right next to the Biosorb that should be dissolved "any time now" but still isn't. Part of me wants to be waiting outside the doctors office so I can know what's going on. The other part knows I won't get an answer fast enough to make it worth making it real by actually telling someone. I'm tempted to call my BS and move up my mammo- by 2.5 months- but expect I'd have to be seen first. I've got an appointment with MO in 2.5 weeks but that seems like forever too. I really just need to be told it's scar tissue you feel or it's not possible it would come back a year later or 3 months after finishing radiation. I barely believe what the doctors say anymore- not likely you have lymphedema, probably won't need chemo, doubt you have BC- in the course of a year! So tired. And that worries me too. I don't want to do this anymore! I want to be done with all this and it just won't stop throwing more curve balls..
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Thank you for such a thorough response! I did ask about the oncotype test & he said he would order it. I actually thought he already had and that was what we were going to discuss today (this only added to my frustration). He said because my grade 2 already put me at an intermediate risk of recurrence, the addition of the LVI gives me an even increased risk on top of it. He also said cancer tends to be much more aggressive in younger patients (I'm only 30).
He said if my onco score comes back any higher than a 10, he's still going to recommend chemo. He said I would have a 12% risk of recurrence (distant and/or local) in the next 10 years if I do not do chemotherapy. Which didn't sound high, until he said it can come back in my bones and I would be incurable. I don't think I can justify all of the side effects, particularly because he also said it's not safe for me to do fertility preservation, and I'd essentially be destroying my chances of ever having a family. I also got a referral from a co-worker to get a second opinion. That appointment is set for the end of the month.
I've never felt so defeated. Thank you (all) for your responses. It's nice to know I can get feedback from others who were unfortunately once in my shoes
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hi everyone
I've been away for a while. Tried to read & catch up but wow there is a lot going on. I'm feeling really blessed I didn't get shingles after surgery. Those of you that have.... sending healing thoughts. ChiSandy. You said you fear falling because of Letrozole... does it make you dizzy? I've been on it for 3 weeks and boy o boy was I dizzy! I started taking it at night & that seems to help. I also was glad to hear that I wasn't crazy that I was getting zapping pain in my surgical breast. I see the MO for my first FU next week with a long list of questions.
I too have been trying to cut all sugars but some days I just say the heck with it & enjoy that donut or candy bar.
I'm going to try to be on here more so I can keep up
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