Lumpectomy Lounge....let's talk!
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mustlovepoodles, thank you for your support and information. I had no idea some women go for as many as 4 surgeries to get the results they wanted. I am going to call my insurance and see if they will cover another opinion with another PS. I have an appointment with my current PS so I will see what he says this time. I'm gonna have to be a bit firmer with him. Than
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Hi octogirl. Were they unable to save your nipple because it was cancerous or just too close to the tisseue that needed to be removed with the LX? I'm sorry if i am asking very personal questions....I go to see the bs tomorrow morning for the first time and I am trying to gather as much information as possible so i can make the most of my time during my appointment. It's really important to me to keep my nipple, unless it is diseased. But i'm looking for honest answers so i can moderate my expectations.
Thank you for your help.
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Sorry if I sounded too flip. Perhaps it's because I'm almost 67, happily married and it's been decades since I had a body that looked good naked (and have therefore made peace with its visual flaws, if not its lessened capacities). I shouldn't assume everyone is so situated,
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Blair, I finished up my chemo almost 2 years ago, but I will share my experiences with you. My first round was the worst. Three days after my first chemo I was hospitalized with sepsis. I have never been so sick--I could hardly walk from my hospital bed to the bathroom. And I had excruciating pain in my pelvis, enough to require opiods. It took me a couple weeks to recover, but by the third week I was raring to go again. I never got that sick again, thank goodness, although I did run fever every time (and had to go to the ER for fluids and IV antibiotics.) Oh, wait. I did get gastroenteritis at the end of my last chemo. That was pretty sucky and I ended up in the ER because I couldn't stop vomiting. But that was the only time I vomited during the whole chemo process.
As far as side effects, I didn't find them too overwhelming. The first and worst was hair loss, of course. On Day 17 after the 1st chemo my hair fell out in my cereal bowl. I went to Great Clips to have my head buzzed and found that they have a policy of giving that chemo-buzz for free, so that was a bonus. The lady who cut my hair was very sensitive and treated me kindly. The only other side effect that was bothersome was how my taste buds changed. Everything was off--smell, taste, texture. Suddenly my bowl of cereal tasted like grass and my salad was paper clips. About the only things that tasted normal was pizza and lime popsicles. I didn't lose, nor gain weight. I looked great through it all (my DH picked out a smoking hot strawberry blonde wig that looked totally natural.) I did have a lot of fatigue, especially from day 7-14 of the cycle, but by the third week my energy was pretty normal.
Good luck to you. I feel like I got off easy compared to a lot of people who really have a hard time with chemo. Taxotere and Cytoxan don't seem to be as hard as some of the other drugs.
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CancerSux72, what you are describing does not sound like a great result for someone like you who is interested in decent-looking breasts, as are many women, especially if they are younger, unattached, or where nice breasts were always an important feature. I understand you are not seeking perfection but what you describe is far from it.
If it were me in your situation, I would check with insurance you have to see if they would pay , and how much , for a redo by another PS, if you could find one who could give you realistic hope for improvement, and/or determine how much of your own resources you would be willing to spend to pursue this for private pay. If you have no resources to pay on your own and insurance were to say " no way we pay, you already got covered reconstruction from a famous guy", you could appeal, but success is unclear, and appeals are stressful, especially when the PS insists all is great. You may also land up with a redo by a guy who just needs clients and is willing to take whatever insurance pays for a redo, and it could land up worse.
I have known women who were unhappy with results for various reasons, less severe than what you describe, and got insurance to pay for a new PS, there is some flexibility, but it varies per policy, and these were stubborn, obstinate women who knew how to fight hard with bureaucrats.
I had lumpectomy and no reconstruction because I worried about side effects of surgery, given my other medical issues. I am now very asymmetrical because I was small to begin with, but I am 63, married, and DH talked me out of considering reconstruction because of greater operative and pain risk, said he does not care. If I were younger and unattached, I would want reasonably nice breasts if I could afford them either through insurance or privately.
Any surgery for you could increase risk of another blood clot and/or more scarring, and may be more difficult than the first one, results not guaranteed, but out here in looks-oriented CA ( especially in the south) there are awesome plastic surgeons who work miracles, but for lots of cash, no insurance taken. There is a risk/benefit calculus.
I am so sorry for your understandable distress, and your username says it all. Good luck.
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Thanks so much - Mustlovepoodles - you went through hell I think with all the ER visits. I hope the first round is the worst for me. I know I’ll be better prepared how to handle the side effects with the other rounds
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Hi everyone,
I had a lumpectomy and reduction last Tuesday and my surgeon just called with the pathology today. I missed the call and haven't talked to her but she left a voicemail. I had chemo first before my surgery. She said the sentinel lymph node was negative, she said there were clear margins and she said the IDC had complete response to the chemo BUT there was also DCIS, which I didn't know about. I don't have any details because I haven't talked to her yet but has this happened to any of you? I guess the DCIS didn't show up on the mammo, ultra sound or MRI I had before surgery!?
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I had somewhat a similar situation with my reduction. When they took out the extra tissue from my right breast (tumor was in left), they discovered a hyperplasia mass that was considered pre-Cancer. My bs was so vague in explaining anything on the pathology report. I wondered too if it was a spot that showed up on the gazillion images they took or MRI. At least it’s out, but makes me wonder what could still be lurking, but chemo, radiation and hormone therapy should kill what may be left.
I’m in my first round of chemo out of 4. With your HER2+ - they do the pre-surgery chemo method a lot. It was good your margins and lymph nodes were clear. You could call your bs nurse and ask, which is what I could do, but my doctor would probably want me to pay $50 to answer one question. I tried it before and that’s what they told me.
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hi ladies. I had my first appt with a bs yesterday. I have DCIS with some IDC just behind my R nipple. I explained to the bs that I was 99% sure I wanted a LX and it was important to me to keep the nipple. I also told her that I was trying to find a silver lining in all of this and do a reduction at the same time. She flat out brushed me off about that option and said they don’t do that at the same time and I would need to wait for 8 months to a year until “everything settled down after my radiation” before I could consider a reduction. When I told her that I understood that most plastic surgeons don’t like to operate on radiated skin, she nodded and said that was true.....but she seemed kind of like, sorrry no options. Did others here do a reduction (or I guess an augmentation) at the same time of your LX? If so, how did you have that discussion with your bs? I am going for a second opinion at Sloan Kettering on tuesday morning....hoping to get more info and tips before that.
Thanks
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DagnyT - Your bs sounds like she has the same attitude as mine has! However, my bs insisted I have a breast reduction as opposed to mastectomy. She uptalked how great and wonderful it would be. Knowing little about it at the time when I saw her, it was decided there and then that that’s what I would have done. Not by me, but by her. She put on a act that now I could kick her butt to the moon for!
I had a more advanced cancer than you, so I don’t know why your Dr is against it. From what I understand, breast surgeons and plastic surgeons are to make your breasts symmetrical as possible. Now, in my case, I had to have a big chunk of my cancer breast removed and maybe because of other areas that the images and MRI picked up within the breast reduction tissues, the team decided the best thing to do was to do a reduction. I’m a small person overall for my age, and I was a DDD cup size. Now (although still healing), I’m a D and more proportionate. Maybe in your case you only need a simple LX because there’s not much tissue involved, but you could definitely get a second opinion
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Curious how you guys felt the day after your lumpectomy + sentinel node biopsy (under general anesthesia) ?
If you were dosed with pain meds and ice packed and just had to sit, would you have been able to go to listen to a speech? I would be going with 5 healthy people who would be taking care of me if necessary.
I have tickets to a very special sold out event to hear a famous woman speak and I'm trying to anticipate how likely it is that I will not be able to go.
I know that in the large scheme of things this is a small thing to obsess about but still, I'd love to be able to go.....0 -
Yes, i could have gone to hear a speech after my LX. Not a concert, but something low-key would have been fine, especially if i had help. I only too pain meds at night, jusy Tylenol during the daytime.
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Moth, there is absolutely no way I would have been able to go listen to a speech the day after my lumpectomy and sentinel node biopsy, and care one hoot about what the speaker was saying, even loaded with the strong pain meds and ice packs. But as my username indicates, I have chronic pain problems, and am very sensitive to invasive procedures (my brain is basically reset over the years to feel things more, complicated mechanisms). But that is me, I am probably extreme. Some women here have posted that they went shopping the next day and only took tylenol. Everyone is different. The norm seems to be a lot of pain for 2-3 days (though not as bad as mine), then rapidly less.
If you are with other people, however, and they feel up to taking on a potential burden if things go off when you go and then cannot take it, as long as you do not overuse your arm, lift or do anything stupid to jeopardize your wound (and your BS says it is ok, knowing your entire history), perhaps you could try if you feel up to it and it is that important.
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Moth, aside from being tired (stress and the surgery), I was comfortable. I took a couple of regular Tylenol at night and that was it. I could have sat through a lecture if it wasn't terribly long. I spent hours in the ER with my husband and son, not long afterwards. I suspect there is no way to tell how you will feel. Just play it by ear.
HUGS!
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I was comfy enough to go out to dinner a day later. But I did get some progressive upper-body muscle soreness later that night that lasted a couple more days--felt like having done a serious weightlifting workout without being used to it. It's "scoline syndrome," from the powerful muscle-relaxant drug succinylcholine they give you once you're "Claritin is the brand name of the antihistamine loratidine--which is the only active ingredient in the pill. Doctors don't know why loratidine works on bone pain while other antihistamines in that class (e.g.,Zyrtec/cetirizine and Allegra/fexofenidene) don't. Get the cheapest store brand generic you can find. The rubbery legs are probably fatigue and mild neuropathy, par for the course.
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(((Poodles))) I hope you are feeling better today. I sent you a PM about Chek2 and PALB2. Hopefully it doesn't worsen your stress but I think it is why your MO said you will need to continue you on AI's and exactly why I wanted to change MO's. My (now former!) MO did not give me the time of day. Hopefully my new one does.
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Thanks, Molly. I am feeling better this week--i restarted my antidepressant and mood stabilizer. We got our stuff moved on Wed and managed to cram everything we are keeping into a 10' x 10' storage unit. It is stacked to the ceiling. We close on the house tomorrow at noon. Then we are officially homeless, LOL. Plan A was for us to move into our RV, but it's still in the shop. Thankfully, we have Plan B. We haven't sold my mother's house in Alabama so we will head down there after the closing. It won't be fancy, but there is a bed, a couch, dishes, and towels there. We can make it work.
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Poodles, even though things are quite going to plan (and it WAS a good one!), at least you do have Plan B. Glad your house sold and you have your mother's available to live in. Gives you a chance to breathe before moving on. Prop the feet up and polish off a bunch of wine!
HUGS!
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I'm wondering how you all feel about the latest study that says birth control pills raise the risk of breast cancer. I was a very early adopter of the Pill. Started it in about 1964/65 taking Enovid 10 then Enovid 5. Eventually took Ortho-Novum (I think). By my 30s Chuck had a vasectomy and no more pills for me. I didn't do well on Ortho-Novum. I did very well with no problems on both Enovids.
It seems to me that the study they are citing has BC occurring within 10 years of taking the Pill. Mine was 30 years down the road. I know nothing about the modern Pill so can't speak to it. I suppose my birth control use over 50 years ago could be a factor in BC but I'm skeptical.
HUGS!
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PontiacPegg - I saw that on the evening news too. I believe it was a recent research they did in the last 11 years with an age group of women between the ages of 15 - 49. It has been known for many years that birth control pills could cause breast cancer. I'm close to your age and I too was on Ortho-Novum in the 70s. It gave me problems (can't remember what), and my doctor switched me to some other pillsnafter that one. I had forgotten all about Ortho-Novum - I'd say it was one of the dinosaurs of birth control. You brought back a long forgotten memory of that brand. Anyway, the newer study said that with the lower newer estrogen pills, it didn't seem to improve or change the risk like they thought it would.It seemed to say that the women who were using it for several years had a higher account of breast cancer by the time they reached their 40s. There was something the doctor said about less chance if the women went off of it for 6 months. I don't remember the details exactly.
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Pontiac Peggy: I have often wondered if my use of birth control pills contributed to my diagnosis. I took bc pills for around 28 years. I had a few breaks but not too many. I didn't take them for about two years after I had my daughter. My 17 year old daughter is taking them to help with her quite painful periods and I feel extremely paranoid. Her doctor is not concerned about it though.
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Blair, I believe Enovid 10s were the first birth control pills. I looked at the stories on the study and there was quite a lack of information in them. The studies seem to indicate it is the progesterone that is the problem. I also took Premarin and then Prempro for a total of 3 years. Now that one makes me mad. I wasn't suffering from hot flashes or anything else but the early studies of HRT said it was the best thing ever. So I went along with it.
Shocked, I didn't take the Pill for nearly as long as you did. Maybe a total of 15 years max and two breaks of 2-3 years. I can understand your worries about your daughter. Everything is a tradeoff, isn't it? Quality of Life now for a possible slight increased risk of BC. Who knows?
Very confusing.
HUGS!
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I took birth control pills over a total of 40 years. With breaks of 3-5 years during that time. Late 1970's, I can't remember the name, 10 years at least of stronger pills. Later in life the low dose 90 day Seasonal (sp?), probably another 5+ years.
It sounded like early stronger pills were part of the research. But again, it was to avoid pregnancy, and it worked. Did it contribute to my bc? Anyone's guess.
As to attending a lecture the day after lx, I didn't get home from surgery until almost 9 PM. I had to set an alarm for pain meds every 4 hours. No way I could have gone anywhere. I don't think I was too functional until noon, when I stopped all meds. Everyone is different.
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I started on Ovulen 28 when I was 14 (and a virgin), for dysmenorrhea. I stayed on it (or a lower-dose successor) for 17 years, and stopped when we started trying to conceive. I went back on it for three years when Gordy was a baby and then tried unsuccessfully to give him a sibling. Because my periods once again got more frequent and heavy, I went back on it till I was 45. Didn't go into menopause--which was a breeze and a relief--till 55 (and my menarche was at age 10). So I am the poster child for estrogen overexposure. I suspect that the Pill raised my bc risk from 12% to 18%. But OTOH, it's protective against both colon and ovarian cancer, the latter of which is never diagnosed as early as bc and therefore carries a lousy prognosis. So if I had to get some form of "lady cancer," I'm okay with the kind I got at the stage it was discovered.
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I don’t think any of us will know whether birth control contributes to some of our BC or not. What does concern me as far as our daughter’s, grand daughter’s future is the rise in the disease. Yet, some news media claims it has come down, but can we believe everything in the news anymore? Not. It seems like everything from soy to drinking alcohol is blamed for it. I think there needs to be more research to the causes, than just a bunch of statistical numbers. Too many variances per person’s medical history etc. making it so difficult.
I also get frustrated hearing that exercise prevents it. I’ve always been a physical work horse all my life. I did the aerobics, jogged, (lousy runner, but I tried), walker, yardman and handyman (because my ex almost burned the house down trying to fix something), type person working myself to extreme exhaustion many times. I never smoked, always conscious of what I ate (not perfect), and I breast fed my baby. I end up with a bypass at 65 and breast cancer at 68. My cardiologist did a lot of blood tests and he proved I carry two genes that they think (controversial like everything else) make me prone to heart disease. So why breast cancer?
It was probably the Roundup I sprayed in the yard! Ugh
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I took BC pills when I was 18 and they made my weight blow up and my breasts become enormous. I had to stop eventually because my calves would swell and it hurt to walk. I tried a variety of them over the years and it didn't matter what combination it caused my calves to swell. After DD was born I had shots for birth control and didn't like those either. I'm lucky I didn't end up with a dozen kids. Tried the sponge, tried diaphragm and ended up only using condoms. I am surprised I tolerated HRT for 3 years.
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I recall my primary doctor encouraging me to get off the pill in my early forties and my OB/GYN encouraging me to stay on until 45. Of course in hindsight maybe my primary was correct. I just went off with my BC diagnosis and have a very highly positive estrogen receptive cancer. I agree with ChiSandy on the benefits toward other less easily detected cancers so its hard to say. I hope going off of the pill and on Tamox may be enough to prevent reoccurrence from a hormonal perspective.
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I would be hard pressed to find anyone in my circle who did NOT take BCPs or HRT. I'm of the 70s generation. Everybody was having sex and we were aaaallll on some kind of hormonal birth control.
My 63yo SIL took BCPs from age 17 until menopause in her 50s, without a break. She has no children. I took BCPs for only 4 years, had three kids, and breastfed for over three years total. I got BC and she has not. *shrugs*
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Poodles, I'm an early 60s gal. Missed out on the flower power, free sex (well.....sort of) free for all. But I sure didn't want to be pregnant out of wedlock. Abortions were still very illegal. I remember one gal in college who went back alley and it was bad. I also wouldn't do anything different. I think I was about 35 when Chuck had his vasectomy. Since I was still smoking the dr thought it prudent that I go off the pill. Fine by me. I didn't like Ortho-Novum and Enovid was in the scrapheap of outdated medications. I had more problems (breakthrough bleeding primarily) on O-N. I am still convinced that in my case stress was the cause of my BC. Since I had microcalcs for years prior to Dx, maybe it was only a matter of when rather than IF I got BC but still...
HUGS!
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Stress doesn't cause cancer. It can make you more susceptible to the bacterium that causes ulcers; causes headaches; exacerbates heart disease and asthma; even makes it difficult to lose weight if you're pumping out too much cortisol, which inhibits leptin production and increases ghrelin (the hunger hormone). It can cause anxiety attacks via the same mechanism. But it doesn't cause cancer--though it can make it tougher to endure treatment. (However, cancer DOES cause stress).
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