Lumpectomy Lounge....let's talk!

Nash54

Kvgross...my oncotype score was a 24 and no chemo for me.  For my BSO the score was just one piece of the puzzle.  I guess based on my age, tumor size and whatever else they look at, a long term AI was felt to be the best decision....after lx and internal rads.  My BSO has over 30 years experience and is head of the BC center I go too so I felt good with his recommendation.  Protocols seem to vary.  

PontiacPeggy

Glad your RO took charge and is helping you. Thank heavens the pain pills are working. It's all crap from the BS (and b.s. too!). Hope that the drainage slows down or stops. Sleep well - I know you're exhausted.

HUGS!

Molly50

Big, big hugs to you Shirley! I would fire that BS once you are done with this! Scsa, I got my path report after 5 days. Catfurr, sorry your team did not use lidocaine. That really helped me with 3 wire placements and the isotope injection.

PontiacPeggy

Molly, I'm with you. Fire that damn surgeon.

HUGS!

april25

How long after sx did I get my path-- I had my post-op 5 days after surgery. They had MOST of my path report by then... and the rest by the next day.

Who had chemo and why -- I had Neo-adjuvent chemo (because of size of tumor and HER+ and maybe higher grade... not 100% sure, but no sign of lymph involvement). It was good in a way because once I found an MO I trusted I left everything in his hands and there was a lot less confusion (and wow, that time around first being dx'd is a crazy, crazy time, isn't it?). I also had time to take a genetic test, bone scan and bone density, etc., so things were better set when surgery came. I never had the oncotype because was already getting chemo and I think it's not recommended for HER+ (maybe for same reason?).

Choosing a LX--I'm glad that's all I needed. If I had needed more later, then that bridge would be crossed, but having the least amount of surgery and the most breast conservation at first can't be a bad thing! --I've got smaller breasts (A/B) so taking a chunk out can be more disfiguring, but so far, even with the RT shrinkage, they really only look slightly different--and people aren't symmetrical to begin with.

Getting copies of path -- I would have been totally ticked off if I wasn't given copies of my path reports from the biposy and lx. I know some people don't want to see, but if you ask and don't get it, that's just ridiculous! (Not that I understood it, but still! Lots of info on it that answers at least some questions.)

Worries about RT and whether to have it -- All the docs (MO, RO, BS) seemed to think RT was a given--whether I had a lx or mx. Maybe it's because of the higher grade? I know I'm a bit weird, but I actually didn't mind RT at all. I'd had chemo (which was a pain due to SEs... I was severely dehydrated every single cycle and needed hospitalization or continuous IV drips at home. Also got some neuropathy which is gradually going away), so having that finished and over pretty much made EVERYTHING better. Chemo was do-able, just really, no fun if you get all the SEs. And LX seemed a bit scary, but still not as bad as chemo. I'd never had any major health issues or even any stitches before DX, so the idea of surgery was worrying, but after I had a port placed before chemo, that got me over the idea of worrying about incisions and stuff involved with that. Luckily, I had no problems... healed up fast.

I do still have hard lumps where my tumor bed was, and near my incision, which don't bother me so much as make me wonder why they are still there. BCO info on seromas say some take a year to go away, so I guess I might be one of the slower ones???

I'm coming up on my 6 mo followup with my BS! I guess he'll say something if it's weird to still have hardness there??? Weird how time passes! --Oh--and I'll be getting a mammogram at the same time! That should be interesting, with my hard-lumps/seromas! But they don't really hurt, so maybe it won't be bad? Gah. I can't wait until there's a better way to do this other than mammograms! To top it off-- mammograms did NOT catch my 3cm tumor!!! I had to find the stupid thing on my own through self-exam! ...bleh.

I can still see my scars, but they aren't bad... Just a darker line around my nipple. The one for my SNB is sunken a bit. (I guess I put on a little weight since chemo! Like 30lbs! agh.) So I'm a bit pudgy around it. Does this mean it's attached to whatever's underneath?

Oddly, I'm getting a sort of weakness in my 'bad' arm... I feel it when I'm doing something as simple as lifting up a coffee cup. I'm going to have to ask someone about that. It started a month after RT and I thought it would go away, but it's been a few months now. Maybe LE-related? Pressing on a nerve or something? Hmmm...

Other than that, I feel pretty normal, but waiting for my hair to grow in, which is taking forever! It's around 2" or so... which is better than nothing (and I do have to say that it's kind of fun having short fuzzy hair to run my fingers through--and so easy to wash!). Also still figuring out if I'm having SEs from Anastrozole... Seems bearable so far, thank goodness! --And my year of Herceptin should be ending soon! I wonder if I'll have my port taken out after that? It will be strange to be without it. I think I'm only kind of getting used to it!

Not popping in here as much as before, but I did read everyone's posts!

Good luck to everyone who has just joined us. I love the support here! SO much great info, too. I really can't add to the tips for what to do going into the LX. Just don't worry too much. Make sure they know if you have reactions to latex or tape or anesthesia. Be prepared for the wire-things if you get them. Be prepared for the blue pee if you get that. Rest as much as possible for the 3 or 4 days after, and ice. And you will be FINE! Really! Even if things don't work out as well as hoped, you'll get through it! Do what you need to do to get through.

It's been around a year since my dx! So weird!

PontiacPeggy

April, glad you are doing so well! I didn't mind my RT either. I was so relieved to not need chemo that radiation was a breeze and didn't really register (DH was very very sick at that time and my mind was on him, not me). My left arm is still strong but it doesn't like it when I lift anything heavy - it gets all tender and annoying so I try to do heavy lifting with my right arm.

Time really does move forward. My active treatment ended a year ago October - just Arimidex and there's no problem with it..

HUGS!!!

Nash54

Shirley so sorry to hear you are having a rough go of it.  My device was not placed during surgery but about 10 days after.  Also, mine was on the side of my breast so I could tuck in into the back of a sport bra.  If the leads are not placed properly it can be uncomfortable as it pushes under your skin.  Hope you get things sorted out soon.   

Liza12345

Peggy since this is all so new for me I don't know how to update a profile but will go to the breast cancer site and see if there is information there. All of you use all these abbreviations and I swear I am trying to understand and I certainly am not dumb but I don't know what any of it means. Thanks for telling me the BCO was that helped me. Will try and make my profile public when I learn what I am doing. Thank you Peggy

PontiacPeggy

Lisa12345, Here are some helpful hints. Go to your profile page. Follow along to the various sections, answer or tic everything you know. Go to the SETTINGS tab and check the PUBLIC box. Then we can see everything about your BC. For all the abbreviations, scroll up to the top of this page, on the left there is a box that says Help With Abbreviations. That will clarify things for you. It is very confusing. You are trying to absorb so much new information that you never wanted to have but now have to totally conquer. Let us know where you are located. Some of the areas have get togethers and they are a blast! It is so nice to be with people who absolutely "get" what you are going through. Let us know if you have any questions at all!

HUGS!

Liza12345

Thank you Peggy, here goes and hope that I can do this

PontiacPeggy

Of course you can!

HUGS!

meme2006

Molly50, yes they did the pathology report during surgery. The pathologist said they both tested negative for cancer. When they sent them off, that's when it came back that one of them was positive. 1/3 of it actually, my surgeon was not too happy about why the pathologist didn't see it the first time.

The one other thing that really bums me out is to get the clean margins, he will probably have to remove my nipple. The tumor was under it. I know I can get reconstruction, but it does not make it any easier. I have large breast, so he will still be able to remove more tissue and not have to have a mastectomy.

Thank you to everyone for your response and answers. I have an appt Monday with the oncologist, so Im sure I will be able to find out the answers. I do not have an oncotype score yet, as I haven't seen the oncologist yet. My surgeon seems to think I will need chemo because of the positive node and me being premenopausal. I will keep you informed after my appointment. Thanks for all the prayers! Hugs to all!

octogirl

Meme, I had my nipple removed along with Lx because of the location of the tumor. I am still very glad that was an option for me. You can do this. If there are any questions you have, let me know. Hugs!!!

brithael

She's back! Lumpectomy went well with the axillary node dissection and reverse mapping. So glad I chose University of Chicago - every single person was fantastic! My SO felt really good about my margins, of course pathology will hopefully tell the tale we all want to hear. I already knew I had one positive node, so will find out about the others hopefully by Thursday. I had relatively little pain. The worst was my shoulder blade on my back. I knew the lump was deep, but didn't think they had to dig that far! It was probably positioning during surgery. It took longer than I thought. I went into surgery about 9:30 a.m., and first time I woke up in recovery was after 2 p.m. I normally have nice BP, but it spiked during surgery, so they kept me longer in recovery. It has now returned to it's nice low numbers. Still peeing slightly green, but better than the royal blue at the beginning. Mostly tired with no appetite, but that's OK. Glad that part is over.

PontiacPeggy

Brithael, Very glad it's over! Hope there aren't any more positive nodes (fingers, toes and eyes crossed). How nice that you are comfortable. Your appetite will return shortly. Take it easy for as long as you possibly can. Remember, no real lifting with that left arm. If you have a separate incision for the lymph nodes, do the gentle stretching exercises regularly. I never peed blue - they must have used a different dye. At least I don't remember or didn't care.

Very gentle HUGS!

brithael

PontiacPeggy - my blue dye was from the reverse mapping. Yeah the axillary incision is the most irritating.

PontiacPeggy

And I hate to tell you, Brithael, that that axillary incision will remain the biggest pain in the butt.

HUGS!

ChiSandy

Glad you’re home and on the mend, Brithael. Adding my hopes for clear margins and all remaining nodes testing negative. Do take it easy and allow yourself to be pampered. I found a short walk each day (a block at first, no more than a few blocks after the first couple of days) can be restorative. And when it comes to lifting or reaching, best to pretend for awhile that you have only one arm! Stay ahead of the pain and don’t freak out if you suddenly begin to develop severe muscle pain above the waist--it’s a transient SE of the succinylcholine administered at the start of surgery. It’ll pass by the third or fourth post-op day.

Sloan15

Glad it went well!

Nash54

👏🏻👏🏻👏🏻 Brit ....glad everything went well 👍

Molly50

Glad you are doing well, Brithael. Take this opportunity to rest.

Waterstreet

Pontiac Peggy and Molly50, I just woke up after 12 full hours of glorious sleep. I had to set the alarm to change the dressing for the savi insert. It is so sore and tender. I had taken to sleeping on the couch so I can't roll over on my left side. I woke to the news of the deaths in Paris and Kenya had to pray for those families and for Gods grace to work with those left to bury their dead. I wanted to go to church this morning but it is raining and cold and I will watch service on TV once again. I can't risk getting a cold and/or fever. My temp just got back to normal from the seroma. I think pressure is building there again because my left breast is much bigger than the right and thats what happened before it fills with fluid and then sort of blows up releasing the fluid. I am going to take another round of meds and hopefully sleep some more. The RO's nurse sent me home with so many dressing pads and it just soaks them through and thats when I wake up. It gets cold and throbs. It is looking better than it did. I am so praising the Lord for that sleep, I needed it. Just wanted to mention that at the RO's office I got warm blankets and I finially thought to put blankets in my dryer here to warm me up, feels so good.

It was my Granddaughters Birthday yesterday, I got to give her her gift before they left for Austin to go to trampoline world to celebrate her day. I will see them when they come home later today. I couldn't wrap her new roller skates they were to heavy for my left arm and I couldn't wrap them one handed, the box was to big. She also got a new outfit.

I am praying this will not keep me from starting treatment Monday, It hurts to move my left arm and I have to lay with arms up during the treatments. This will be a tiring week with driving back and forth twice a day, but thank God its only for five days. My son said he will drive me to most of them. So glad God let him come home. I will check back with you later. I have to find something light to eat before I take those pills again or they won't stay down. I have lost 8 lbs since Thursday.You take care and I will talk to you again later today. Hugs to you,God bless you both with a good day.

PontiacPeggy

Shirley, so glad you got good sleep. That's really helpful. Smart of you to sleep on the couch although I suspect that if you tried to roll over onto your left side, you'd quickly decide it was not the best idea you had. Warm blankets are wonderful! The best thing I had when I had my Lx was a heated gown! And my hubby had one for his surgery too. About time they realized that being frozen is not a good thing for the patient.

I'm sorry that it seems your seroma is coming back. I can't imagine how hard it is for you to deal with this.

Can you raise your arm above your head at all? I don't know about the type of radiation you are having since I had the standard 33, but I can see where it could be very uncomfortable, if not painful, if you haven't regained range of motion. Luckily I had my ROM back quickly but I also didn't have the challenges you face. How long is the drive to your radiation center?

Eight pounds is a lot to lose in such a short time. Keep eating!

Good luck tomorrow!

HUGS!

Molly50

Shirley, a good night sleep certainly makes challenges a bit easier. You have so much going on. I am thankful your son will drive you to most of your appointments. I will be praying that the seroma won't interfere with your treatment.

keepwalking

Hi Ladies,

I finally got the pathology report today from my BS, which had arrived just one hour before my appointment. They found DCIS surrounding the IDC. While the IDC was at least 5 mm from margins, the DCIS was close at one side and there MAY have been DCIS cells intermingled with the margins on another side. The 3 week (!!) wait was just for the path report - the Oncotype was not done yet!

The good news -
1) Even though the margins were close on the DCIS, my surgeon said he always goes back in and takes an additional amount (sort of like a re-incision at the time of original), and the report on those bits was clean - no more surgery!
2) No positive lymph nodes !

The BS said that in my case, with PR- and DCIS, he personally would not want to make a decision on chemo without the Oncotype score.
I emailed the MO to let him know the path report was in the computer. He called a little while later and said that he sent for the Oncotype, and he would call when the results were back (about 2+ more weeks!). He did say that he GUESSED the results would come back not needing chemo, but stressed that a guess was not worth much.

Back in the waiting room!

Shirley - Hang in there. It sounds like things are getting under control, even though it sounds very painful. Hoping for relief for you very soon.

Britheal - I'm so glad things went well with your surgery and that you are resting at home. I hope your recovery continues to go smoothly. Rest a lot and take the pain meds!

Catfurr - So sorry you had such a miserable time with the pre-op stuff! I hope that your recovery goes better and your pain is manageable. Rest and pain meds - take care of yourself!

I am exhausted from the ups and downs of the day. I hope everyone has a good day.
HUGS, Rina

Brutersmom

i am wondering is anyone might know what is going on with my sentinel node scar. My armpit has been swollen from the incision sight up since the second week of rads. Of course I was told it is not from the rads, but no help was offered. I was made by the RO to fell very uncomfortable as well. Never brought it up again. Now I am getting some red bumps. Half of the incision site is in the Rads field and half is not. I have an appointment with the RO. Hopefully not the one that blew me off. And I would like to be armed with some information before I see him. Thanks in advance. I should have added that I am 3 month post surgery and 3 weeks post radiation therapy.

Molly50

Rina, great news about the clean margins. Brutersmom, sure looks like rads caused it to me. I have red bumps in some fields of radiation. I would not allow the RO to tell you it's not.

mustlovepoodles

Brutursmom, could that area be infected? I had a lot of pain and swelling under my arm, but it turned out to be a huge seroma. Mine got infected and was a big mess, though.

Sloan15

Keepwalking -- I'm sure the MO GUESSED with the help of Adjuvant Online or from what he has seen in the passed, but it's good that he's waiting for the OncotestDX. Great news on everything else! Don't be stressed if you have to have chemo. I had clear margins, no node involvement and chemo as a precaution. When you only have to do chemo prophylacticly, you can always quit early if the side effects get unmanageable. Hang in there, and stay positive in the waiting room!

Waterstreet - I hope you are feeling better each day and can do your treatment on Monday. Glad you are resting.

Brutersmom - I was told that I would experience some swelling due to rads since it's trauma to the tissue. I sometimes feel that some doctors take questions personally like we are criticizing them. I LOVE my oncology doctors. When I ask a question, they put down their pens, computer, notes, etc. and LOOK at me and LISTEN. If it's not a side effect they see often, we brainstorm, and then the doc puts it in his notes to look at it the next week. My son wants to be a PA, so I make sure I pass on stories of what a good doctor is like. Well, I hope you get a different RO this next time!!!

Anyone have any good pictures today? I wanted to take one of our "pet" squirrel, but today I found out he is controlling the growth of his teeth by chewing on my outdoor pergola! Now, we call him a tree rat and have to shoo him away. He gets up in the tree and squawks and shakes his little fists at us. Everyone is giving us advice: Put down coffee grounds, put down pepper, put down hot sauce. We just trimmed the tree back and made him mad at us.

Jo6202

MLP,

I just finished reading Joan Lunden's book about her battle with breast cancer. The front cover is her with her wig but the back is the same pose but she is bald. What a beautiful women with or without hair. If you see her book in a store, check out the back cover.

Jo620