Lumpectomy Lounge....let's talk!
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Hello!
I just thought I'd check in here since I finally got a surgery date: May 8th.
I had neoadjuvent chemo, 6 cycles, three weeks long, TCHP (taxotere, carboplatin, herceptin, perjeta) started in December, so I was hanging out in the chemo threads until now.
Chemo was pretty tough and I'm so relieved to have it done that I really don't think much about surgery or radiation or the targeted treatments. I'm still recovering from it. Of course, I've only just reached the end of my last cycle today, so I guess I should give it a little time. My stomach is still upset, but at least I can eat some normal food now.
I just saw my surgeon yesterday and he said he'd operate next week. I'm a little worried because chemo left me weak and anemic... Just had blood drawn today, also chest x-ray and ekg... Had a bilateral MRI last Friday. No one's told me if the tumor has shrunk a lot, just that it has shrunk. Of course, since I lost weight, my poor breast has also shrunk! There will probably be a sizable divot left... but my surgeon still thinks a lumpectomy is doable. And I will have radiation no matter what, so why not go for the lesser surgery?
I wonder if it's a bit quick to be having surgery just a week after finishing chemo, but these guys know what they are doing, so I'll leave it up to them. They featured my surgeon (Dr. Giuliano) in part 2 of "Emperor of all Maladies." It was kind of cool to see him in that. He did a lot of the pioneering of SNBs... so I'm reassured that he won't be removing anything more than is necessary (there has been no sign of lymph involvement on any of the scans I've had so far... hopefully that will pan out when they do the dye thing during the SNB and when they do the path!).
It was a bit of a shock to hear about the wire bracket thing. I mean they had just mammo'ed me that day and made my poor port hurt! AND stupid screening mammo's failed to find my cancer-- I found the lump myself during self-exam... So it was not fun hearing I'd be getting another mammo where they'd stick in wire brackets to define where my tumor is located... I would have thought an ultrasound would be better for that, but then I'm not any kind of medical person... Ah, well. I often feel I'm just along for the ride and whatever happens, happens!
Anyway, I'm glad there's a place for lx folk to hang out. 'Hope you all are doing well.
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April25, welcome to our Lumpy Lounge. You've been through so much already. Try to breathe for the next week. How cool to have your surgeon featured (what a great program that was!).
The wire locator is for the surgeon so he/she can take the cancer out and get clean margins. It locates the cancer. I asked my surgeon if she could "see" the cancer and she said she didn't want to - she want to see only the good stuff. An ultrasound wouldn't work for this. They should give you lidocaine and the procedure quite doable.
If you wind up with a dent, there's plastic surgery that can fill it in. And hopefully you'll fill back out anyway now that you can eat.
Don't worry about AIs or tamoxifen. You'll do just fine!!
We're here for you!
HUGS!!!!
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kayfry....what a sweet doggie! Very handsome.
April....welcome. I remember when you were first dx'd. You sure have been thru a lot. You really seem to be handling all this with such grace. Sounds like you are in good hands. Hope you can finally get back to some kind of normalcy after your lx.
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PontiacPeggy -- Thanks for the welcome and the good thoughts! Yeah, the HER2+ means I get the full treatment-- chemo, surgery, rads, target treatments...! Chemo was pretty horrible, but hey, we have to do what we have to do, right? And I'm SO happy to have that done with (still feeling the effects, though, but still a totally relief anyway).
The problem with the well-know docs is they are really running around and busy, so I don't get to find out too much about the procedure... they have residents and nurses and such for all the questions. Although, really, he seemed like a very nice, caring guy, so it was cool. My MO got me in to see him, and I really trust my MO, so I'm feeling I'm in great hands. But he kind of mentioned the wire bracket thing quickly right at the end when giving his assistant the info he needed to put on the orders-- so that was a bit of a surprise to me! I'm so glad there is this board where people like you, who actually know what that is, can help me out a bit! (I was like, what? wire? is that normal? or is there something weird about my tumor that they haven't told me???!!!)
I'm feeling a LOT better about it all just hearing that the wire-thing is pretty normal. I guess I should have been checking out the surgery threads here before, but really... this whole surgery thing just crept up on me! (Although, probably not as fast as it happens for all of you who get the DX and go right to surgery! At least I had like 5 months to get used to the idea that it was going to happen!)
Nash54 -- I can't believe I was DX'd way back in November! So long ago, and yet not, since I'm only getting to the surgery part now... Yeah... feeling even slightly normal would be really, really nice! I was hoping for a bit of a break between chemo and surgery, but no rest for the weary! I'm just glad that I'm in good enough shape to have surgery (at least no tests saying differently YET! Still have to get some results back, though).
And... well, we know this is a long-term thing even if we do get back to a normal life...! Ah, well. It's OK. We're all still here and kicking, so it's all good, right?
AND-- wow... who misses that time when you're first dx'd??? Not me! That was such a crazy, stressful time that everything that came after was much more easy to deal with! I lost 10lbs just from running around like a madman seeing doctors and getting tests and trying to figure out what to do... and I am NOT one who can lose weight easily (like NEVER!).
Anyway, I'm glad I can do a LX now, too. I was worried I might not (big-ish tumor, small-ish breast... plus possibility of cancer returning what with the HER2 and all...), but that's all for the future. Right now, I'm thinking the LX shouldn't be difficult. And worry about margins or having to do more is something I can't do anything about, so I'm going to try and cross bridges when they happen and not over-think things!
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April25, you have the right attitude. Stressing out over what you cannot change is useless and.....stressful! The Lx should be okay. Most of us feel good between right away and few days. From my point of view, I think you've done the hard part already - the chemo. Keep up the positive thoughts - they work!
HUGS!!!
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Hi April,
When I was first told about it, I wasn't nuts about having a wire localization either. They most likely won't squish your breast as much as they do for a mammo.... just enough so they can isolate the cancer area. They numb the surface with lidocaine, then insert the wires. To me, they looked like acupuncture needles. Mine stuck out about an inch and were taped in place so they wouldn't move around.
Have you had a consult with a PS?
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PontiacPeggy -- Thanks! Hugs back atcha!
PoppyK -- Oh, thanks for the further info. Tiny wires sound much better. You know, I was envisioning big huge wires poking out!!! (I knew it wouldn't be like that, but you know how the mind just goes there!)
No, I haven't consulted with a PS at all.
I think the BS was thinking there should be no problem... He was just "next week we can schedule the surgery!" and that was that. I guess I'll just wait and see how it goes. If they need to go back in, I guess I'll have to see a PS then!!!
... Everything seems to happen so fast!
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April, even with a dent, I think I'm not interested in more surgery right now. Maybe in the next 10 years
Wait for a year maybe to see what you want to do, if anything.The wires are NOT huge and the procedure isn't as bad as the mind makes it. At least you don't have time to go crazy waiting for the Lx.
HUGS!!!!
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the sniffles.. are GONE!! *happy dance* so that means surgery will be on fri ..yay? Today Im doing laundry and cleaning the house and tomorrow maybe a massage
Then friday its happy pills and fluffy cat fur therapy April25- I had the wire done and having it again on fri. I didnt feel anything but the twinge of lidocaine I was loaded on xanax too, not sure i needed it but they offered and I accepted. I didnt look.. however.. I might be daring and look this time ..
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Panthrah - YEAH!!!!!!!!!!!!!!!! What a huge relief! Happy pills and furry cat are both excellent tranquilizers. I didn't look either time (once over 10 years ago) and then in July. I did hold the nurse's hand which was very comforting. My long ago experience was horrid. My recent one was 180° different. Now I wouldn't dread the wire locator. I was offered a valium when I got to the surgery center and took it. Also took the dramamine when offered. I figured it they offer it who am I to turn it down?
Keep us posted and many HUGS!!!!!!!!!!!!!!!!!
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i totally brought a squeezy stress ball ( mike from monsters inc) but once the xanax kicked it.. i just sort of held it and forgot to squish him
I even thought.. for a moment.. of not taking the xanax this time since i know what to expect BUT with arriving at 9 and surgery at noon...the meds helped the time go poof gone. so Ill prolly take it 0 -
Smart to take it, Panthrah. Stress balls are good too. Being in la-la land is not a bad thing
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Heh! I think I'd go for the meds, too! Why not?
Wire thing still sounds creepy, but I guess it's better that the surgeon can locate the tumor he's supposed to get out...!
They make it sound so easy-- "Oh, it'll only take an hour to do the procedure!" Not talking about being there early and then going through the wire thing and then waiting around and then waiting to wake up and get ready to be checked out after...!!! They won't even tell me the time to be there yet... They say they'll call before the date... So I'm assuming the whole day will be taken up. I've never had any surgery before, but I'm sort of getting used to hospitals and procedures by now. The port placement was a good way to work into this all...! --Also helps hearing from everyone else about this.
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April, it took me a good 6 hours from arrival to coming home on my day of surgery. Everything has to be done in order and some have to be done at a precise time before the surgery (such as the dye for the lymph nodes). And then there's recovery afterwards. I think the surgery didn't take all that long. Surgery centers seem to specialize in not letting you know too far ahead of time when to show up. Maybe their schedules change so often that it is difficult. Who knows. As long as you have the date, you're good.
Definitely go for any meds they offer you - tranquilizers, Dramamine, even painkillers in recovery. That was the only pain med I took besides regular Tylenol at night (which I'm not sure I needed but it was comforting). BTW, I did fill the prescription for pain meds in case I did need them. Better to have them and not need them than wish I had them.
You'll do fine. It's just hard to wait when you want to GET IT OVER!
HUGS!!!
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April, I'm so SoCal, too. Where are you going for treatment? I went to the Women's Cancer Center at Loma Linda University Med Center.
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Hi Everyone - so glad I found this thread .. I am meeting for the 1st time tomorrow with my Oncologist, surgeon and Radiologist. I have had 2 Biopsy's - left breast only .. all things look like very early IDC - 2 spots less than 1 cm. My Nurse has advised the most likely recommendation is Lumpectomy with Radiation - cells were ER & PR ++ and HER2 Neg so favorable for Hormone Therapy. I have been told many times how dense my breasts are and recent UltraSound Radiologist advised that my breasts are so dense they may not see it all. Does anyone on this forum regret Lumpectomy? I am leaning toward Unilateral removal of 1 breast ... just want thoughts on it!0 -
Welcome, MDoc524. Glad you found us. For me, a lumpectomy was the desirable course. I was sure my BS would recommend a mastectomy but she did not. I personally think that going conservative with an Lx is a good choice. Most studies indicate that in many cases the outcome is just as good. Especially now that SLNB are done rather than removing every lymph node known to man.
Listen carefully to all that your oncologists have to say and what they recommend. Of course, YOU have to decide what is best for YOU, but they really want what's best for you, too. So I guess unless you have a very strong reason to disagree with them, I would go along with their recommendations.
Please take my advice for what it's worth - from someone who cares but is not a doctor.
Other ladies will be able to chime in on their reasons for choosing one way or the other.
Good luck with whatever you decide and don't look back. Once you make a decision, it's over. Trying to second guess yourself down the road is a shortcut to going nuts. Keep positive!
HUGS!!!
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Hi Mdoc,
I second everything Peggy wrote above. (Peggy is wonderful. Her friendship, support and strength are a blessing!)
I do not regret my lx. In my case, the docs recommended lx but would do a mx if that is what I wanted. Mx is a big, big, big surgery. I'm glad it was not required in my case and am glad I had options. I considered several factors including size of the cancer, location, how "aggressive" it was, my age, overall health, how I felt about my breasts and so on. Of course, most important was my doctor's recommendation. I would have had a bilateral mx if I had any of the cancer genes. I never considered a unilateral mx. When it was all said and done I wanted my breasts to match so I could have fewer daily reminders of cancer.
Best wishes for you as you make your decisions.
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Hi everyone. I had an ultrasound on that lump in my bad girl that appeared in the cancer site after my mammogram- the radiologist breast specialist who read the ultrasound came in and told me she didn't feel it was a cancer but felt the mammogram had caused a blood clot in the area where I had the fat grafting. She said it probably was a freak thing and not to stop getting my mammograms- she said she could drain it but didn't want to interfere where the fat grafting was. She said to do a follow up in 3 months, she will be leaving but there is a new gal coming in the fall.Next day went to my plastic surgeon who was on his last day as he will soon be doing just hand surgery. He was quite beligerant and said that it was dead fat , I reminded him I had just seen him 3 weeks prior and he told me it was all great and I didn't need anymore fat grafting. So he proceeded to unbuckle my robe. I thought I should do that myself and he actually pushed my hands away. He pushed so hard on the spot in my breast it really hurt. He would not explain why it could have happened after a mammo- just insisted the fat could die anytime for 8 months- funny how the time before he told me 3 months. Anyway he told me I didn't need that follow up US as he knew what he was talking about and that I should take Advil as he wouldn't drain it and that I would probably need more fat grafting in the future- grrrrr... he said to see a colleague of his in 3 months for a check.
So I have no idea what to do next. The lump is quite painful and rounds out on top my breast so my bra rubs it. As soon as I get home I tear off my bra and run around braless but it gets very sore when I have to wear one. I am happy they do not think its cancer, but confused on what I should do as they both didn't agree on the treatment and he was a total jerk. like I was taking up his time. My appointment was supposed to be 15 min I saw him 5. I was nearly in tears when I left there. GRRRRRR
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Ndgrrl, That is just awful and completely uncalled for. I would definitely complain... to the med group (if he is part of one), to your insurance company, the med board... whoever I could think of. Have you considered getting another opinion?
So sorry you are in pain. At one point in my recovery I put a very soft, fuzzy sock in my bra to protect the spots that were sore.
I am so angry about the way you were treated. Fighting cancer is hard enough, the medical "professionals" shouldn't make it more difficult.
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Poppy, thank you so much for the kind words. I really appreciate them.
NDGrrl, WTF?!?!?! What a POS your PS is. He's lucky you didn't murder him on the spot. I sure would have considered it. I agree with Poppy about complaining to everyone, especially the group he may practice in AND the hospital. They need to know how he feels about his patients. Was this jerk your BS? If not, then please contact your BS and see what he/she has to say. Or see your MO. You need answers and certainly deserve them. And make sure you tell them how unhappy you are with your PS and why.
I wish I had a good idea for how to keep you comfortable. If you can, go braless all the time (and if it is comfortable). Wear vests or sweaters if you are concerned about putting a little too much on display.
Anyway, I'm so sorry that you're suffering, had such a crappy appointment. Listen to your RO - it sounds like she knows what she's talking about.
Many, many HUGS!!!!!!!!!!!!!
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Mdoc524, there are a lot of factors to consider, including how you feel about having more extensive surgery, how you feel about keeping both breasts, and how large your girls are to begin with (to me, being very small, it seems the bigger ladies do have more options with Lx and reconstruction). That said, I do not regret having had Lx + radiation, which was my BS's recommendation. Recovery from surgery was very fast, so I could get back to doing things I wanted/needed to do. Rads was a pain in the neck but very doable. Personally, I don't think I'd want to go with a unilateral Mx, because it just seems too awkward to be so mismatched—though others may have a different take on that. Since Lx is the most conservative option, there is always the option of having either unilateral or bilateral Mx at a later time if that seems appropriate. I agree that once you make your decision, try not to look back.
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Ndgrrl, that PS is just a total jerk, and how he treated you borders on malpractice, in my opinion. He definitely should be reported for treating you with such callous disrespect. Good thing he's not going to be operating on women's breasts anymore, with his attitude! The radiologist, on the other hand, sounds very reasonable, and I would believe what she said.
Could you make an appointment with this guy's colleague NOW, rather than waiting 3 months?? Or possibly better yet, see a different breast plastic surgeon (not from the same group) for a second opinion?
I'm sorry you had such a terrible experience, that's completely indefensible. But glad no one thinks it's cancer!
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hi guys.. my surgery time was all accelerated today was suppose to be at noon.. they took me at 1015 .. I guess someone had cancelled.. so everything got done faster
have been home watching star wars and disney movies while eating dark chocolate cookies with a cat on my lap and frozen peas strapped to my boob not too bad. The DH is more wiped out than me now being this is round two at the same place with the same surgeon .. its interesting of some of the differences :
1. iv given in OR this time (nurses were rocking out to the bee gees )
2. last time i think I was intubated .. throat hurt.. this time no problem
3. last time no headache upon waking.. this time wicked headache.. used the boob ice pack for my head and headache was almost gone when we left
4. last time chest was on ace bandage lockdown, this time they gave me a bra..that had no compression at all. after a discussion of needing compression
5. xanax knocked me on my butt.. this time.. i was lightly fuzzy headed
5. iv left no mark last time , im already bruising this time
6. barely any bruising on lx site last time, already pretty colorful now (totally dont mind.. since i never mark up.. its kind of fun)
7. and.. last time they taped the gaze down.. today it was free floating in the ..as the doc put it.. "non sexy bra"
overall.. everything is fine.. no real pain.. just takin it easy and watching movies.. tomorrow.. netflix binge watching
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mdoc524....absolutely no regrets for me on LX decision.
ndgrrl....so sorry you had such a bad experience with your PS....his behavior is inexcusable.
panthrah....glad to hear you are doing well.
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Nash54 thanks
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PontiacPeggy -- Wow. 6 hours from time of arrival to time of departure...! They really didn't hint at the total time at all with me. They only mentioned that the surgery itself would take about an hour... Hmmm! But then, that's why this board is so wonderful. Now I know better what to expect! Thanks for the HUGS!
PoppyK -- I live in So. Orange County, but am staying up in Santa Monica with my sister for all my treatments. They are at The Angeles Clinic in Santa Monica (in the St. John's Medical Buildings), and surgery at Cedars-Sinai. I started out at Kaiser, but switched during insurance Open Enrollment in January because I liked the Santa Monica and L.A. doctors better. I'm lucky that my sister doesn't mind hosting me for so long. I live alone, so she would worry like crazy if I wasn't there anyway! -- so it's a bit of a bother being in a guest room, but I definitely like the care I'm getting up there.
mdoc524 -- I'm getting a LX. I am hoping that my margins will be clean and that it will be the only surgery I will be having. I would be getting radiation no matter what. Mammograms did NOT catch my cancer. I had to find the lump doing self-exam. So I have no confidence in mammograms. But I have a friend who said it was a bit odd having one breast with feeling and another the felt different and looked different... and she's had operations to try and match them up better, but they are only so successful... I was not BRCA, though I do have some family history of BC. I also have small breasts (A cup), and large-ish lump (was 3cm, shrunk a bit, but not that much, so it's still over 1cm), so my result might not be fantastic (I may be left with a big divot/smaller breast on one side). But I'm still going for the LX. I can always get more taken off later and cancer can still return even if you get rid of your breast tissue... so I just don't want to bother with a big surgery and more surgery to reconstruct... and maybe a BMX if I was concerned on my breasts being a bit more matched (that's still not a guarantee).
BUT--it's really what makes you comfortable, and what your doctors advise that should decide for you.
ndgrrl -- Wow, that doctor sounded terrible! It's great he's leaving you to a colleague. Hopefully the next guy will be better. Agree with kayfry that you should try and see new doc sooner. And/Or get a 2nd opinion from someone else. You shouldn't have to put up with bad doctors! There are plenty of them out there.
panthrah -- Interesting how your experiences differed each time! Thanks for posting. I'm still a newbie to the whole surgery thing, so every experience is enlightening!
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Panthrah, so glad it was nice and quick for you and that you are feeling good. Colorful is okay. Isn't it nice to have it over and done with? Don't you wonder why your experiences were different? Furbaby is wonderful for relaxing post-lx. As are lots of good movies. HUGS!!!!!
April, I think, but obviously don't know, that the surgery was 1 to 1-1/2 hours. I know my son and DIL went out for breakfast once I was in surgery and they didn't have to rush. Apparently the staff encourages the family to go out rather than sitting around in the waiting room. Cellphones sure do make for more freedom. It IS nice to have an idea of a timeline and what to expect. I don't recall if I mentioned it, but they allowed me to walk down to the surgery suite and that did more to raise my spirits than anything else. I felt less like a patient/victim and less "sick". It was empowering. I hope you can do that. I hadn't thought about the plusses of going to a center specializing in breast cancer surgery. I rather fell into it since it is attached to my hospital and all my oncs are connected to both facilities. But it was very good. The staff was exceptionally caring and most were women. I hope your experience is as good as mine! HUGS!!!
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Hi All -
I have been more of a reader than a poster lately. Now though, I have a bit of good news On this past Wednesday, I had my first mammogram since surgery and radiation. Good news - the mammogram came out fine. Nothing other the normal post-surgical, and radiation changes that one would expect. Next mammogram will be bilateral, serving as my annual will be in 6 months. I saw my radiation oncologist on the same day. It will be the same arrangement in 6 months as well. The visit with the RO went equally as well.
Panthrah - glad your surgery is behind you. Just take it slow.
Ndgrrl - Sounds like a horrible and totally unnecessary experience for you to have., If his way of interacting with you made you feel "creeped" out, I would certainly report it to someone in the medical center,
Nash - I wish you the best of luck with your new furbaby.
MarieBernice6234
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PontiacPeggy -- My sister will be driving me to surgery... I hope she won't stick around for so many hours, but she might. Seems like a long time to be hanging about, though! I'll have to warn her about how long it could end up being!
Thanks for the HUGS!!! Back atcha!
marieBernice6234 -- Congrats on reaching a milestone and having good news!
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