Lumpectomy Lounge....let's talk!
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Last night I order some lovely hats, and went to the Look Good Feel Better session, came home with a wig, just in case I want it, and a bag full of makeup and other goodies. It was fun and sad at the same time. I also have been practicing tying scarves, I have so many, that I should be fine with color for my many days. When the time comes, for the final cut, I'll try and make it a party, my girlfriends will be with me. This is my last weekend to party! After that, I'm sure I'll be a bit quieter, not that I'm big on loud roaring parties mind you
I went to the store and the Dr's offices this morning, getting looks from everyone...I have to remember I have pink hair, cause I forget why everyone is looking Shaz, there are great DB's to read about those who have started chemo, what to expect, and how to deal with it all. I see yours is similar to mine, I don't have the doxil. How many treatments will you have? It's a good place to read up on all that is coming, right sweethope? There are at least 2 other women starting chemo the same time I am. I do have to get some more "big" earrings.
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BikerBabe, sounds like that Look Good Feel Better session was perfect for you. I remember (now) that my DIL attended one late into her chemo and was mad at herself for not going much earlier and being willing to ask for help. Don't be shy. People want to help but don't know what you need. I love that you have pink hair! HUGS!!!
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ElaineTherese , I had lumpectomy 12/18 and another surgery 1/8, and I am still swollen. My RO thinks it's a variation of normal. I exercise every day, so maybe I'm contributing?K
kayfry How did the simulation go?0 -
Lumpy done, had some things explained to me, feeling great today!
When I arrived @ hospital, the worry that was lurking in the back of my mind was that there would be a consent form saying "possible axillary dissection," which there was. I waited until I was called by the first nurse and was given the consent form, at which time I explained that I did not know I might be getting an ALND, that when I was called by the dr.'s office to verify everything and heard "possible axillary dissection" I then called the dr.'s nurse and she confirmed that I was just getting a lump & SNB, and I kept saying, "So the woman who called probably had the wrong chart," and was given the impression that the answer to that question was yes.
The dr. was then called over and told me that as he had explained to me in the office, he would check the sentinel nodes and if they were malignant he would remove the rest of the lymph nodes. Well, I hadn't heard that, nor did my hubby—what I heard was that he would remove the ones that were cancerous—I have no recollection of hearing that the whole shootin' match would automatically be removed. I asked him had anyone every told him that he talks too fast which got a smile from a couple of the nurses who had gathered round. He explained that this was standard medical practice, that they can't take out each remaining lymph node one at a time and check, something which I hadn't clearly understood, and that the odds of my getting lymphoma were relatively low (I wasn't going to quibble). Then I pointed out that he had never discussed with me that my biopsy results showed a high rate of aggressiveness of my cancer, which is why I was so concerned about the lymph nodes, and he told me there was no correlation between the two, which ultimately is what gave me some peace, so I signed the consent and hoped for the best. Their hospital system does not do the axial reverse mapping because it is not yet accepted as a standard procedure, but fortunately it didn't matter.
Post surgery, no malignancy in any of the sentinel nodes! Got home about 1:30 pm, did a lot of sleeping, and today I feel great and have cut the pain pills down to one every six hours which is working just fine. I will see the nurse practitioner on Thursday, the dr. the following week and hopefully will soon get an appt. to see the oncologist to find out what's next.
So glad to have good news, and thanks to all for your good wishes which seem to have paid off.
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Surprise...good for you for sticking to your guns and getting a full explanation before signing the form...and extra good for you that no nodes were involved, yeah! Glad to hear you are feeling good
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Surprised, great news! Proud of you for making the dr explain everything in DETAIL to get the answers you needed to make an informed consent. Take care and good path reports!! HUGS!!!
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bikerbabe, my nipple is super sensitive too! And not in a good way! My last surgery was 1/29. I still have days where my armpit and breast are tender. Some days not. Really weird.
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Dakotagirl -- After meeting with my MO and RO, I'm going to get my lumpectomy boob drained on Thursday, 2/19. They both believe that my seroma is enormous and are concerned that it looks pink (though not red and not burning hot to the touch). So, my surgeon is going to use a needle/syringe to drain the fluid. Only then will RO schedule a simulation for radiation.
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DakotaGirl, it seems like the swelling lasts a variable amount of time for different people. Mine went down within about 3-4 weeks after my one lx.
My simulation was very easy, thanks for asking! I was expecting it to take around an hour, but it went much faster than that, and everything was fine. I only got one tiny tattoo, the rest all purple marker covered with clear plastic stickers. So that's a little bit weird, but not painful. Position for treatments will be not that uncomfortable, with knee support, a little gel donut for neck support, and the mold they made for me. Both arms overhead but not in an especially uncomfortable way (except that I have some shoulder issues, but I think for the short time of treatments it'll be okay). Two (female) techs were great, but since I'm getting my treatments at a different facility (closer to my home, but the simulation had to be done at Hopkins main facility), I expect I'll have a different treatment team there. I think it'll be fine, but I'll be very glad when it's done! I have my "set-up" and, I think, meet with RO on March 3, and then start treatments the next day. 15 whole breast irradiation (sounds like cooking chicken parts, hmmm), and then 4 boosts was what I was told earlier, so I'm assuming that's what it'll be.
I think it's great that you're exercising every day. I'm doing that too.
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This morning the on call surgeon called with my pathology results. Good news is that three of the margins are clear! Bad news, one is not. Decision time again. Do I have a third lumpectomy or have a mastectomy. I keep going back and forth about what to do. My surgeon will be back from vacation next week and I will meet with her on the 27th. I think I want to give a lumpectomy one more try. But, if I understand correctly, if I have a mastectomy I won't need to have radiation or tamoxifen. Both are positive reasons to go that route. I know my family's vote, but I am putting that aside to try and figure out what is best for me. My 11 year old said to me, "Mom, just get the mastectomy". Oh, if the decision was that easy. They have taken a lot of tissue in the last two weeks, unfortunately I can't tell any difference because of all the swelling. Maybe if I could, my decision would be easier. Hopefully, I will be able to sort through the pros and cons and get a grip on my emotions.0 -
Rekidal, that's a bummer about that one margin. Shoot. I have a friend who had a mastectomy and she is taking Arimidex so maybe it's not for sure that you wouldn't be on tamoxifen or an AI. I'm sure each person's case is different. I can't blame you for contemplating a mastectomy. A really bitchy decision. I certainly would support you in having a 3rd lumpy (not that my vote counts). Guess the best you can do is list your pros and cons for each choice and discuss them with the surgeon on the 27th. At least you'll be making an informed decision with all the information possible. Many hugs with whatever you decide. HUGS!!!
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Thank you Peggy. I think if I still had to do hormone therapy then it would be a big con. At my first appointment, with this surgeon, she said that hormone therapy along with radiation would most likely be recommended if I have a lumpectomy. I didn't realize that it might still be necessary after a mastectomy. As much research that I've done, I am realizing that there is still so much I don't know. Like, when I should meet with an oncologist? I was told that it would be after my surgeries and clear margins. It seems really strange that I don't meet with one until after the cancer is removed. Is that standard? Or, could this be a hospital policy type of deal? Did you meet with an oncologist right away?
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Rekidal, I didn't meet with my medical oncologist until a month after my lumpectomy. I met with my radiation oncologist about the same time and had my setup done. So, no it doesn't seem strange that you haven't met with your MO yet. Radiation and hormone therapy are pretty standard for lumpectomies. You mentioned that hormone therapy is a big con for you. May I ask why? Many, probably most, women do very well on tamoxifen and AIs. Obviously, your MO will discuss your options and you will both find the best course of treatment for you. Are you post-menopausal? HUGS.
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Peggy, that you didn't meet with an oncologist until after surgery makes me feel better. As far as the hormone therapy, I really don't like taking any medication and this one seems to have way to many side effects. Unfortunately, the question about menopause is a little difficult to answer. I had an endometrial ablation quite a few years ago, and although I had a month or so of mild hot flashes this past year we can not say with all certainty that I am not perimenopausal. So, I do not know which hormone therapy treatment they would ultimately recommend.0 -
Rekidal, how confusing it all is! Please don't write off any therapy until you have talked with all your doctors. And do discuss your concerns with your surgeon! They will be able to help you and provide information. Probably the docs will want to determine your menopause state at some point (if they can - sounds like your body is trying to keep everyone guessing). Just keep writing down your questions, pros, cons, concerns etc. Write them as you think of them. Don't know about you but I'm blonde and thoughts often go straight through - in one ear and out the other without stopping. So catching them quickly is vital
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Peggy, you are too funny!! I am definitely going to be getting a small notebook I can keep with me. When I went for my second opinion, I had two full pages of questions. My surgeon is great! She spent almost an hour with me at our first appointment. I called her office today, and let her receptionist know that this was going to be another long appointment. She started laughing and checked my appointment time. She told me that I am all set, that I am her last morning appointment. Lol
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Glad to make you smile, Rekidal. (BTW, I *love* blonde jokes). Good for you for getting a notebook. I keep my questions in a word processing document and keep adding and allow for space between questions. I name the file with the doctor and date of the appointment. I print out the document and write the answers on it. Then when I get home I put the answers in the computer file. I also keep the one I wrote on. I believe in overkill. I've used this system for years and it works for me. Smart of you to tell the receptionist that your appointment is likely to run long, and very thoughtful.
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I really needed a laugh today. Thanks! I'm sure I will have more questions to ask here after my appointment next week. Have a good night, and I'm sure I will be talking to you soon.
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Anytime, Rekidal! Here's one for you:
Is it true that blondes stay up all night studying....to pass a urine test the next morning?
Good night!
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Rekidal, I met with my BO before surgery, only because of the size of my tumor and there was a possibility of doing chemo before surgery. Turns out it was a little smaller then they thought, so no chemo first. Normally, I would not have met with her until after the surgery, results of the SNB, and path report---all of which lead to the final treatment plan. It's my understanding that if we are hormone positive, then we will get that medication after chemo and/or rads, as it's intent is to prevent the cancer from recurring. Don't quote me on that, as I haven't gotten that far in the discussion with my BO, but from what I've read, that seems to be the recommended treatment. I too, do not take any medication, and haven't, ever. So the thought of all this being introduced into my life doesn't make me happy. But if means I have a better chance of keeping it away, then I'll do. Do you have a nurse navigator that you can discuss your situation with? Perhaps knowing what may lie ahead of you for treatment--whether you choose another lx or mx will help you to make a decision you are comfortable with. Good thing is you have a few days to make a decision, and you aren't rush.
I'm not going to laugh at the blond jokes...even though I am now blond...temporarily at least...he, he, he...ok, so I laughed quietly
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Rekidal and bikerbabe...I was dx'd at 59 and have never been on any medication. So taking the AI for possibly 10 years was a hard pill for me to swallow. However, I have not had any side effects and from everything I've read it has a very high success rate for reducing the recurrence rate. I am staying very active (yoga and walking) to counteract any possible joint pain (which seems to be the most common SE).
The only docs I met with were my BS...who is an oncologist BS and my RO. Since I was forgoing Chemo I never met with a MO. It was my option not to discuss treatment options further once my BS gave me his recommendation of no Chemo.
I'm 5 months out from my LX and am doing really good. I can't believe I even went thru any of this...it feels like it was a lifetime ago.
Wishing you the best.
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Hi all, the surgical coordinator called me back this morning. I ended up scheduling lumpectomy surgery for next Tuesday. I really wanted to schedule it for the first week in March and talk to my surgeon next week when she gets back from vacation. Unfortunately, I was told that she is only back for next week and then out the first half of March. Ughh! I am going to speak with her on Monday to see if we are on the same page or if she is going to recommend a mastectomy. They told me no big deal if I cancel, but I would have to wait until mid March if I didn't get it scheduled. Am feeling a little rushed, but the last time I waited a month the breast tissue collapsed and she had to approach the surgery differently than originally planned. I am not crazy about having a third surgery in less than four weeks, but just want to get it done. Peggy, Bikerbabe and Nash I'll try to keep an open mind about the hormone therapy. Luckily, I do have time to make that decision.0 -
Rekidal, I don't blame you one bit for being less than excited about 3 surgeries in 4 weeks. Nobody would want to do that. HOWEVER, I also would just want to get it over. I am glad you are going for the lumpy. My thinking is that you are doing something less drastic and it appears the staff is onboard with that. I'd talk to the surgeon too on Monday.
I would not be surprised if you go on hormone therapy no matter your choice since you are ER+/PR+. And, yes, you have time to make that decision.
Time for another blonde joke and this one is timely:
As a trucker in Wisconsin stops for a red light, a blonde catches up. She jumps out of her car, runs up to his truck, and knocks on the door. The trucker lowers the window, and she says "Hi, my name is Heather and you are losing some of you load."
The trucker ignores her and proceeds down the street. When the truck stops for another red light, the girl again catches up . She jumps out of her car, runs up and knocks on the door. Again, the trucker lowers the window. As if they've never spoken, the blonde says brightly, "Hi, my name is Heather, and you are losing some of your load!"
Shaking his head, the trucker ignores her again and continues down the street. At the third red light, the same thing happens again. All out of breath, the blonde gets out of her car, runs up, knocks on the truck door. The trucker lowers the window. Again she says "Hi, my name is Heather, and you are losing some of your load!"
When the light turns green, the trucker revs up and races to the next light. When he stops this time, he hurriedly gets out of the truck, and runs back to the blonde. He knocks on her window, and as she lowers it, he says "Hi, my name is Kevin, it is winter and I'm driving the SALT TRUCK!!
(I know, it's older than the hills) HUGS!!!
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Lol Peggy....vert timely
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I thought so, Nash.
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Lol! So appropriate. I was stuck for 20 minutes this afternoon waiting for a front end loader to knock down snow banks so cars could see the on coming traffic. The snow in Massachusetts is insane right now. We have gotten close to 100 inches in the past several weeks. I think we are suppose to get another storm on Sunday.
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Where are you located, Rekidal? I have a lawyer friend outside of Boston and he's snowed under too. I don't know how you're managing. HUGS!!
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Hi bikerbabe. I'm having 6 treatments,3 weeks apart. I was reading all the side effects yesterday. That's enough to make me want to run away and hide. Lucky I have ambulance cover! I live in the country. How are you feeling? Today my having my mirena removed. Ouch! My partner and I did laugh when we read bout having sex during chemo. Apparently you have one use a barrier so easy doesn't get my of chemo drugs. He rated hat we weren't going to have sex. Apparently chemo is a turn off.
I started a March thread, I will read the February one too. I'm so scared :-(
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rekidal, there seems to be some difference of opinion on this, but I (definitely post-menopausal) was told by my BS that if hormone therapy were to be suggested for me, it would be tamoxifen. He told me that tamoxifen is standard for both pre and post-menopausal women. As it turned out, I'm ER and PR negative, so I'm not doing either, but until that was known (after pathology results in), the possibility of tamoxifen was out there. It is, of course, your choice whether to do hormonal therapy, after weighing possible side effects vs. potential benefits. It makes sense that you wouldn't meet with MO unless and until your medical team decides you should consider either chemo or hormonal therapy or both. I wound up not meeting with MO at all since I'm doing neither. I would think the lx vs mx question is a very individual one, depending how much more tissue might need to be taken to get that last clean margin, how much breast volume you have to start with, and also just what your own preference is. Even with lx, once the swelling goes down, if you aren't happy with how things look you can always consider reconstructive options. But if you are happy with it, you've avoided a more invasive and drastic surgery, right? In my own case, if I'd needed to have lx X3, I'm pretty sure there'd be nothing left, but I know of other more generously endowed ladies who've had that many excisions and the third one got it, and they're happy they avoided mx. Sounds as if this might be the right choice for you. I'm glad you're getting it done rather than having it hang over your head to worry about for longer.
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