Lumpectomy Lounge....let's talk!
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MarieBernice - YES!!! So glad the mammogram came back perfect. Another milestone reached and crossed! HUGS!!
April, My surgery center REQUIRES that the "driver" be there the entire time (except for running out for breakfast, but still had to be within 10 minutes). So have her plan on being there the entire time. Have her fill up her Nook or Kindle
More HUGS!!0 -
Hi MarieBernice and Panthrah, Great to see you on the boards. Thanks for the updates. It's always great to know how my friends are doing!
April, Your sister will be able to stay with you nearly all of time except when you are having the localization done and during the surgery. My DH went to lunch with a friend (a doctor who works at the hospital where I was treated) and worked on his laptop. It's a long day, but goes fast. For me it was: Show up, check in, pay my co-pay, wire localization, check in with surgery nurses, change, iv started, surgeon came by to talk, then the anesthesiologist, eventually into surgery, recovery (about an hour), released. There is waiting time between all of these steps. Hope this helps.
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I just woke up from a 2 hour nap.. I dont take 2 hour naps.. i gemerally take 20-30 min.. guess im healing
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That's good. Your body needs sleep in order to heal. Take lots of naps. Do lots of nothing except reading, fur cuddling, reading and watching NetFlix. HUGS!!
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*starts twitching* and get cabin fever...Friends are at Disneyland at Club 33.. I was suppose to be there.. I dont do well with "down time". hrm.. plus with energy after my nap
maybe its time to make the kitties chase the laser of dooooooom!0 -
Keep in mind, Panthrah that you you want to heal uneventfully. Don't overdo. Let your body do its thing even if you are getting twitchy. Make the kitties go nuts with the laser. But you stay put! You'll be happier if you rest. Find a good book. A very gentle walk would be fine. It's a bummer that you can't be at Disneyland. But you'll be able to go another time. HUGS!!!
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Panthra, thanks for a good laugh, which I really needed today. I'm glad you're feeling so good so soon, and am enjoying picturing you with the kitties and the laser of doom
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*takes a light bow* glad I could make you guys smile
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Is this normal?? I was diagnosed 4/20/15, met with one surgeon 4/22/15 and then decided to meet with a different surgeon 4/30/15 to discuss lumpectomy and IORT. The second surgeon told me I was a good candidate for IORT and that I should call his scheduler to schedule the surgery. I have been attempting to reach the scheduler since last Friday, 5/1/15. She never answers her phone. She did return my call last Friday to leave a message saying she was leaving early. She did not call this morning. I called her and left a message just before noon. She returned my call while I was in the bathroom. I returned her call immediately and again 3 hours later. I am still waiting. Is it normal to have so much difficulty getting past the gatekeeper? I am wondering if this is a sign that I should forget about this surgeon and the IORT and go with the first surgeon and the external beam radiation. I am trying to get the surgery scheduled so I can figure out what to do about other events in my life. I am feeling ignored and frustrated.
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PontiacPeggy and PoppyK -- Oh... I hadn't been told about my ride having to be there all the time! I guess it makes sense. And I think my sister would do it anyway. I'm SO clueless when it comes to these things! This is the first surgery I've ever had... I've never even had stitches before! So it's all new to me! (I've been in waiting rooms for my parents before, but there were a few of us there, so it wasn't clear who was the main person who had to be there... we just casually hung around! Or I did, anyway.)
Thanks for the info! It helps a lot. I'm really not thinking too clearly these days. Maybe just kind of trying NOT to think too much just in case I worry myself over things I don't need to worry about???
--Heh.--- one thing I was thinking about... they kept telling me to wear loose clothing and maybe something that buttoned down the front so I wouldn't have to raise my arms and pull something over my head to dress! I did not have ANYTHING that opened in the front! So I ran off to Target to get a cheap hoodie and shirt. and I bought a bra that opened in the front!
How important is it to have clothes that open in the front?
panthrah -- Oh, I think it's tougher to lie about when you know your friends are off at Club 33! ... I grew up in Anaheim and am just in So. OC now, so I think I could relate, even though I'm usually OK with lying around as much as I can get away with! --I've actually never been to Club 33!!! (I guess I'm just not hard-core a Disney-phile enough???)
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April, it is VERY important to have clothes that open in front. It won't be particularly comfortable raising your "bad" arm for a while. You'll want a front close bra or a Genie bra. Something that is low cut on the sides. I found sports bras just didn't work for me. I liked the Genie bra. Your ZIP hoodies will be fine. Remember, you'll want something button for sleeping in. Wear the most comfortable clothes you own for Friday.
Don't stress too much about the surgery. It will go well and you'll feel fine. But most of us find that comfy clothes are vital. Nothing tight under the arm. No underwire bras. The damn SLNB incision is a ROYAL PAIN!! The lumpy incision seems to be far less bothersome on the whole. Also make sure you have lots of ice or ice packs. That feels really good.
The day of your surgery, if they offer you a drug, take it! Whether it's a Valium, Dramamine or pain pill. The pain pill I took in recovery was the only one I took. Plain old Tylenol was all I wanted and just at night. Of course, your experience could be different. If you do have pain, take something for it. Don't suffer. You'll heal more quickly. (BTW, how have you managed to avoid stitches so far in your life? Pretty amazing!).
Think positive! That helps so much. And it is wonderful that you have your sister to be with.
HUGS!!
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Sailor.... My two cents... take the time to find the "right" team to work with you.... open lines of communication ( as in no "gatekeeper") .... I had that concern early on ( excellent communication while I was at their site, no way to get through to a real person on the phone for the next 2 days). I met with a third team (in my case MOs) and am so glad I did! Maggie
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SailorBev, I don't think your experience is that common. Why not call the surgeon's office and say that the scheduler is difficult to reach and how would be the best way to insure that you actually get to talk to her?
That said, which surgeon did YOU like the best? Did you really connect with one over the other? Perhaps the other surgeon might consider IORT radiation too. You do want a BS who is there when you need him. To me, that's vital. My BS always returned my calls, even at 10 o'clock at night!!! That mattered to me. I had traditional external radiation and had no problem with it. A teeny bit of redness (more like pink) and some fatigue. Granted, it's a pain going 5 days a week but in my case it wasn't an issue.
You decide what is important to you and go with it. Weigh the pros and cons of both surgeons and the treatment options. Which surgeon does the most breast cancer surgeries using breast conserving methods? That might be part of the equation for you.
You don't need to do everything RIGHT NOW. My surgery was over 7 weeks after diagnosis. That worked for me since I had to coordinate my sons coming in to care for my husband while I recuperated. He has Parkinson's and cannot do much for himself (I was his sole caregiver). (He's now in a nursing home).
Think positive! It really does help. Keep asking your questions and we'll try to answer them.
HUGS!!
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Maggie, thanks for saying what I did. I think it is vital to have the right team who is there for you. SailorBev, please take to heart what we're saying. Don't rush your choices. I was extremely lucky that I liked the BS, RO and MO that were recommended to me. All very different and I connected with them. I was confident that they wanted the best for me and would be available. And that has been the case.
HUGS!
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SailorBev - I would follow up again with the scheduler for surgery/IORT if you are a good candidate as long as you were happy with the surgeon otherwise. I had the IORT during surgery. It is harder for the scheduler to set up because of coordinating between 2 doctors/teams as well as for the equipment. It generally will move out your surgery one week or more because all parties need to have an open schedule. It is only offered in limited centers as the equipment is very expensive, is one of the newer technologies and the majority of cancers don't fit the profile. Ask how many IORT have been done. There was a learning curve for the best results. I was #81 for IORT at my center. I couldn't have been happier with the overall surgery/radiation. I don't even realize that I had radiation as they were both done at the same time. Let me know if you would like any additional information on my experience.
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Ok, deep breath...the scheduler finally called and my surgery is scheduled for May 29. Thank you, MaggieCat, PontiacPeggy and gypsyjo for your responses and your support. I was pleased that she had already scheduled appointments for my MRI and RO and tried to coordinate them for the same day. I feel much better.
PontiacPeggy- Although I did like the first BS better than the second she does not offer the IORT. I am pretty committed to that but did start to question my commitment when I didn't hear from the scheduler. I feel much better now that I have heard from her.
gypsyjo - they have done the IORT 90 times at this site and have had no recurrences so I feel pretty good about that.
I do have some questions for all of you and any others who have had lumpectomies--what can I expect as far as recovery and returning to my normal activities? Both surgeons said about a week to return to "light" activities. How about activities that are more active? My husband and I have registered for a non-refundable, week-long sailing rally starting June 21. Any chance I will be feeling able to do that 3 weeks after surgery? The second surgeon said I probably wouldn't be able to do that kind of activity but I would like to know more about your recovery rates.
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SailorBev, glad that is all settled!
Since you are going with surgeon #2 , listen to what he tells you. You will still be healing. And if you have a SLNB done that will be very annoying and require you "baby" that arm for longer than you are careful of the lumpy site. For normal activities, you will be able to do them rather quickly. I was not allowed to lift anything heavier than a gallon of milk for 3 weeks which is why I had my sons come in to care for DH - he required a great deal of lifting. BTW, how you FEEL and what you SHOULD do are not necessarily the same as you can guess. You will feel good. But your body has been through a major shock and has a lot of work to do to get you well. I'm sorry to rain on your parade about the sailing rally. Have you considered having the surgery done AFTER the rally? Would that be a possibility?
HUGS!!!
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I 2nd Pontiac ..."how you FEEL and what you SHOULD do are not necessarily the same as you can guess."
I have no pain (lx was on fri) and feel like i could do cartwheels.. yet I KNOW I shouldnt
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SailorBev, Now that I am 5 weeks out, I would be able to do it, but don't think I would have been able to sooner. Peggy is right about the SNB. I felt I had a broom stick under my arm for several weeks which limited my activities. I also was told not to lift over 10 pounds for 2 weeks. Though my incision was healing, I did have some seepage from a small area of my breast for 4 weeks. I also found that I had some abrasion when I tried to step up my activity level and would have to back off from irritating the incision. Finding the right bras was a challenge to how much I could do. I also had to adjust for some bouncing of my breasts and shooting pains when the activity level was up. The incision seemed tight and I felt pulling inside. I also found though I was healing that I did have some fatigue that normally I wouldn't. Naps were wonderful. To truly enjoy the sailing event, you might want to do that first. Since you are grade 1 and small in size that might be doable to schedule surgery for later. My surgery was approx. 2 months after my diagnosis. I spent a wonderful activity filled weekend prior to my surgery and found that it minimized my anxiety about the upcoming procedure.
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PontiacPeggy, panthrah and gypsyjo, thank you for the information. That helps clarify my expectations. I did ask surgeon #2 about the rally and he said he wouldn't recommend waiting until after to have the surgery. I guess that although I am not that anxious to have the cancer removed, I would be a little nervous about waiting that long.
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SailorBev, I totally understand about not wanting to delay the surgery. Can you go on the sailing rally and NOT help out? Just be an observer? How big is the crew? Obviously a 2 man boat situation wouldn't work very well for you but if the crew is 6 or more, you could still be there. HUGS!!!
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Hi everyone.
Thanks for venting with me, and being in my corner. I needed that!! Sometimes I am so sick of the fight and being my own advocate!! I am tired of doctors and think I have hit my wall. I am still in a bit of shock over that plastic surgeon and just have been quiet. Its like he deflated my sail- 3 weeks prior he told me it was great- no more surgery- blaaa blaa and then after a mammo I now need more surgery? ufff.. I am still hoping it goes away on its own like he told me to. He said to take advil but thinking I may try to hot pack it and see if it goes away. I do have an appointment in July with another Plastic Surgeon in the same place. I see my oncologist end of June and will be asking him as well and if it gets too painful I will be seeing him sooner for a referral to a surgeon this time.
I didn't find this site before I had surgery, wish I had. I wore a really loose t-shirt and sweat pants and went home braless as I just assumed they would give me a special bra to wear home. When I was at home- I lived in a spandex tube top thing that I was given after I had the stereotactic biopsy. I then went out and bought some larger front hook bras during my internal radiation as my breast swelled quite a bit for awhile.
I also didn't find the lumpectomy to be the problem it was the 9 nodes he removed looking for the sentinel node that gave me the problem. I didn't want anything to rub there and I bruised quite a bit from him digging looking in there.
I overdid it about 3 weeks out from surgery by overdoing it at work. I was done with internal radiation at that time and my boss assumed I could do it all and play catch up. I ended up with my arm swelling up and my RO referred me for Physical Therapy for lymphedema and my GP put me on a month rest away from my job. He said I needed to heal.
Thanks again for the kind words
You are all very sweet, wish you all could come with me on my next appointments. I think some of these doctors are nasty when we go alone. UFFF0 -
April25 You've already been through the worst with the chemo, you'll get through the Lumpectomy fine. I am recovering from Lumpy (11 days ago) and feeling great, today is my post-op visit with surgeon. Reading this board was wonderful to get an idea of my surgery, I was terrified, but it really wasn't that bad. The wire localization is just like a biopsy if you've had that done, they numb you up first, the wire goes through a needle, it's very thin and you don't see or feel it. They'll tape it to you and you won't even know it's there. It's so the surgeon can find the tumor. It's a long day, but it does go by pretty quick as you move from one thing to the next.
Open front clothes a must yes, I did not have an open front bra, but I was able to put mine on without issue. I only took one of of my hydrocodone pills that night, more so to sleep, which didn't work because I could not get comfy, but when laying down I was really not in any pain, I just cannot sleep on my back and that was my only option. I still have a full bottle, I didn't take anything, the pain was minimal and only when I moved to fast or too much. Just plan to take it easy a few days and if you need the pain pills, take them. I had my surgery on a Friday (April 24) and Sunday I was able to lift my arm enough in the shower to wash my hair. My surgeon used glue to close the incisions, not stitches. That was strange and there was nothing covering it, but I put some gauze over it, stuffed into my bra. I slept in my bra until 2 nights ago. It still feels strange and is a bit sore at times, still feels heavy and hard, but every day is better than the day before.
Thanks to everyone here for all the information when I was prepping for this, made it through the lumpy and now heading towards radiation. Hopefully! I am in wait mode again. Got the BRCA test results back and it was negative so that is great. Met with the Onocologist and he scared the beejeezas out of us. Nobody had ever mentioned chemo in all this. It was always, Lumpy, radiation, tamoxifen. The tumor was a little larger than they thought, it was 1.2cm , they thought it was half that. Well he tells me, chemo is not off the table, it wouldn't hurt for extra padding on the recurrence percentage, but you have to weigh the benefit vs what it will put you through. He tends to be more aggressive with younger patients (I'm 41) and because it's just over the cut off size of 1cm. From my research and the Radiation Oncologist who did give me the numbers, 2-3% reduction in my recurrence percentage...is it really worth doing that to my body? I was just floored when he said it, was not expecting that. Looking at getting a second opinion now just to make sure we are making the right decision on not doing the chemo. Of course, he is running the Oncotype test and if that comes back in high risk then....who knows. But we feel right now, if it comes back low or even mid, to just stick with the radiation and tamoxifen plan. My radiation guy as I call him, is so confident I won't need chemo has already scheduled my prep appointment to get everything set up for the radiation in 2 weeks.
Just very tired of constantly stressing over test results that affect every decision. Other than that I am feeling good. Positive side of all this, I've lost 8lbs in a month.
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UpstateBee, Thanks for Info! Scheduled for R Lumpy next Fri.
This thread is awesome.
Everyone is so helpful!
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Barbara, my MO seemed to leaned towards chemo too. My BS and RO said definitely not and the MO didn't push it. If my oncotype had been higher then I might have considered it. Just remember, it IS your decision. Listen to all your oncs and decide once all the information is in. I turn 70 in July so really can't address the difference your age vs mine might have on the course of treatment. I do know that if all my oncs had been on board for chemo, I'd have done it. But that's me.
Once you decide what you are going to do, don't look back. Stay positive and look forward!
HUGS!1
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Peggy, Why did the MO lean towards the chemo in your situation? Borderline oncotype?
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PatRN10, I would guess he thought an Oncotype of 13 was in HIS range of requiring chemo. It wasn't in anyone else's range. There didn't seem to be much benefit for me to have chemo. But as I said, if either my BS or RO had agreed with him, I'd have done it. And, frankly, the MO didn't seem to mind that chemo wasn't done. I think he tends to doing everything possible and that includes chemo. Normally an Oncotype of 18 or 19 puts you in that horrid "iffy" range of needing chemo. Much better if your score is really low or really high.
You have another week and a half to wait? That isn't too long between dx and lx. You'll do just fine!
HUGS!!!
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Okay, so I'm guessing it's an MO thing then, it is a service they are selling in a way I suppose makes sense they would lean towards it, do all possible. Met surgeon for post-op today and I talked to her about it, she told me not to stress either, she broke it down based on my situation and said, he has to give all the options, but if it comes back low, no chemo. She did say if it was high or even mid she would lean towards doing it, BUT she thinks based on everything that it will not be mid or high. She'd be shocked. Just like the RO. Feeling much better about that now.
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Barbara, that would be my thought. Just like a surgeon generally prefers a surgical response, an MO probably leans towards chemo. Listen to your BS and RO. And wait until your oncotype comes back. Then decide.
HUGS!!!
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Hi, My blessings to all of you! I was diagnosed with DCI S in December and have had three lump ectomy's . The first lumpectomy had close margins all the way around, the Second lumpectomy had 10 mm margins all the way around but the posterior margin was less than .1 so the third lumpectomy was needed for the posterior margin. That path came back with a margin of .5 mm. The surgeon Was on vacation so her nurse called back with the results saying that margin was very close and everyone would have to meet to make a decision as to what path to take. When I called back to talk to ask a question the nurse confirmed with the surgeon in staff and he told her the margin was cindidred ckear at .5 mm ho to radiation and have a happy life. When my surgeon got back she called to say she Wants me to consider a mastectomy because the margin is too close and she feels the fourth lump ectomy will give me an indented breast and possibly inverted nipple. With two very different opinions I am not sure what to do. I talked to an oncologist who said .5 is too close for comfort for him, I talked to a radiologist who said that was too close for him, and teo other surgeons Who said .5 mm margin is good to go. My surgeon Referred me to a plastic surgeon to look into A Mastectomy because she feels a fourth lump ectomy will give me a poor cosmetic result with a possible indent and inverted nipple. I am a B cup and look fine right now but I don't know what will happen after Radiation. Am i really good to go to radiation with .5 mm margin? Will radiation kill DCIS if any is left behind? a radiologist i talked to said it will kill invasive cells but not DCIS. Any feedback or experiences from you?
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