Lumpectomy Lounge....let's talk!

Hopeful82014

Dear Dogs - No, no, you didn't upset me. I think it's important to realize though that any surgery to our breasts is a LOT to wrap out minds around and that MX is not always imposed - sometimes women just feel it's the better choice. I respect that choice but I don't think that any of us are any more - or less - deserving of insurance reimbursement based on the extent of a procedure. Depending on a number of factors, a lx can be even more disfiguring than a mx. Certainly not always or even most of the time, thank goodness. I think ALL women deserve to be 'made whole' to the extent possible after surgery for cancer. Does that make sense?

Hopeful82014

Sweet Hope - thank you for the warm blanket. The wind is REALLY roaring here today and the extra warmth is appreciated in my chilly office. I'm sending some back to you.

Dogsneverlie

Hopeful - YES, I agree completely.  I am very sad and unhappy at how my breast looks and have been fighting the good fight to get it fixed.  I'm not quite sure WHY the law about reconstruction after mastectomy surgery did not include lumpectomy because literally, half my breast is gone. 

This surgeon and his office have told me NOT to worry about the surgery, that it will be covered by insurance so I am going to take them at their word and if it is not covered, will make payment arrangements!

Any way, we live to fight another day!  Thank you for posting, I was really worried I may have offended you or someone else and I would never want to do that.  All of the women out here are so very special and kind.

Hopeful82014

DNL - I'm so sorry that you're one of us who is left with a thoroughly unsatisfactory result and I really hope you can both get the surgery covered by your insurer AND get a pleasing outcome. PLEASE keep us posted.

I agree with you about how valuable our bonds are on this board - we have the privilege of encountering wonderful women we would not have met otherwise and I think we all treasure these connections and are loathe to imperil them. Sometimes it's easy to sound a little bit 'off' when communicating electronically - whether by email, or on social media. I always TRY to take that into account but sometimes my posts can sound more brusque than intended and I make allowances that others might not come off as meant, too.

Lisaj514

ahh, yes, the commraderie of women, on up days, down days, happy days, sad days, angry days, impatient days and everything in between. We will listen, share and support as long as no one is being out rightly mean or condescending. We are a sensitive group to each other's feelings and viewpoints. I take it all in, and if I read something that "doesn't serve me, I let it go" as my yoga teacher says. We are a sisterhood here, we help each other as much as possible with our words and feelings. Thank you al

Buna

SweetHope- thank you for being in a trial...it is a brave action to help us all survive and LIVE!

PontiacPeggy

It certainly is brave to be in a trial. One wasn't offered to me. And with the turmoil in my life, not sure I would have been up to even making a decision at that time. I'm just thankful for the ones who do make that decision.

Hopeful, this forum is so wonderful. I couldn't have made it without the support of my new friends here. I've never seen anything that offended me. We all have had "off" days when we've ranted. But that's one thing I've treasured - the safety of being able to vent knowing everyone understands and has been there.

Lisa, absolutely right. If someone is discussing things that don't apply to me or that wouldn't work for me, I move on. Because it isn't right for me doesn't mean it won't help someone else. And that's the joy of this forum.

Hugs to everyone and thank you for all the help and support!

Hopeful82014

Peggy, I hope you know that you're an inspiration and a huge help to so many of us. I know you've got a lot to deal with and I send warm thoughts your way on a daily basis.

Lisa, I loved the way you expressed that. I wish I could flag that post for ready reference!

PontiacPeggy

Hopeful, thank you. It seems rather strange to me that I'm an inspiration to you. I think of myself as a woman and wife doing what has to be done, slogging through the crap of BC and dealing with DH's issues. Now that I have Chuck in a nursing home, my life has gotten much less stressful and it's easier to cope with BC. I am quite convinced that the stress was the trigger for my BC. By now, of course, only dealing with Anastrozole and that's not an problem. It is lovely to be rested (for the first time in four years).

Again, thank you ladies for your help. The hints, advice on dealing with all the doctors, etc, has been priceless and much appreciated.

HUGS!

shelleym1

Ok so I'm having some major tingling/cold sensation on my surgery arm. The top of the forearm and hand. This sucks. It got worse after I gave myself a sponge bath. Armpit is totally numb.

PontiacPeggy

Shelley, Armpit will likely remain numb for some time. Sometimes the nerves are quite irritated from the surgery and perhaps that's why you are having the tingling and cold in that arm. Please give yourself time to heal. Two days isn't very long (though it certainly can feel that way). As much as we'd like to hurry the process, Mother Nature has her own timetable. Your body has been shocked by the surgery (as well as your mind) and that is major. Do the exercises you were given by your SO or nurse but be gentle. Even if your breast doesn't hurt it is still working very hard to become well. And it will! HUGS!!!!

shelleym1

thanks peggy

PontiacPeggy

Shelley, it's so hard to be patient, isn't it? We all want to get back to our normal lives ASAP. It will come. BTW, you might want to update your profile to include your LX. Have you gotten your path report yet? More HUGS!!!! (and if you're not taking pain pills, a nice glass of wine always helps!).

shelleym1

path report will be back tuesday

kayfry

I am two days out from my lumpectomy for two smallish areas of DCIS in left breast; biopsy results were Grade 3 DCIS. Surgery day was long and difficult, but I'm feeling pretty good now. No node biopsy, as my surgeon thought it unnecessary, but now I'm anxiously awaiting pathology report, probably early next week. When I first got my diagnosis, after results of biopsy came back, and then when I had my pre-op appointment with my breast surgeon, everyone was basically saying that it's great that it's stage 0, non-invasive, so it's all good news, and my very good breast surgeon said the fact that it was Grade 3 wasn't that important, the important thing was that it's non-invasive stage 0. But then when I talked with him the morning of my lumpectomy, he not only mentioned that the pathology will tell us if margins are clean (which I knew, of course), but also if there's invasive cancer, and he said there's a 15 percent chance that invasive cancer could be found. That kind of threw me, since all along everyone's been saying there's no chance that DCIS is invasive, by definition.

Anyway, this morning I could remove the dressing and take a shower, so I finally got a look at things. The incision looks very clean, no bleeding, etc., but it was still a little bit of a shock to see that there is a significant dent in the lower part of my breast (DCIS was at 6 o'clock) and a fair amount of distortion. I know that things will change some as healing progresses, and once I have my bra on, it's okay. I can live with this if that's the worst I have, but I am wondering how much further shrinkage and distortion I will get following radiation. I have very small breasts to begin with, so there isn't much of anything to spare. I am really worried now that if the margins aren't clean, I'll have to have more tissue excised, and if there's invasive cancer, I don't even know what would be recommended. I'm feeling that if either or both of those things come to pass, I might be better off having a mastectomy instead of whittling away more and more of my breast when there isn't much there to spare. Maybe with mastectomy I could avoid radiation, which I really kind of dread, but I also dread having additional and more extensive surgery with longer recovery time, and possibly multiple surgeries if I want reconstruction. I'm concerned that I need to figure this out before having radiation, since I understand that would somewhat limit reconstruction options. I've been advised that I might want to consult with plastic surgeons before beginning radiation to see what my options might be for getting the best cosmetic result, which could involve minor augmentation of my healthy breast to achieve symmetry. I know I'm getting ahead of myself before pathology results are in, but I wonder if others here have been through these confusing what-ifs, and how to keep calm when so much is riding on the pathology results?

shelleym1

Kay you aren't the only one with what ifs. I'm waiting to find out if he got clear margins and if my node was clear. And then what I'll do after that depending on the results. Keeping calm has by far been mine biggest challenge. Will this roller coaster ever end?

BBwithBC45

Hi Kayfry,

I don't have many words of wisdom right now. I had my surgery last Monday. I was told to call for results yesterday afternoon and all day I was shaking at the thought of what was coming my way. The results were not in yesterday, after all, so today I'm going through the same anxiety.

My surgeon decided to do the sentinel node biopsy due to Grade 3 indicating the aggressiveness of the cancer. Like you said, DCIS is non-invasive, but initial biopsy is not always 100% correct because it only checks a few samples of the tissue. With lumpectomy the pathologists are able to get a more accurate diagnosis. The nodes my surgeon is checking are like an extra step to make sure no cancer cells moved beyond my breast. He told me that there is a 20% chance that there will be a change in my diagnosis post surgery.

I guess we just have to wait for the results and take it from there. I don't think we'll have to make decisions immediately, but once we do have results our choices will be narrowed down and hopefully it will get easier to decide on the next steps.

Do you know when your results will be ready?

BB

PontiacPeggy

Kay, When I had my LX for IDC, they found DCIS also. That hadn't shown up anywhere. I also have very small breasts and my cancer was at 6 o'clock. After 6 months and radiation things have settled down. My nipple is downward facing which can be a challenge. I wear padded bras most of the time and padded camis a lot. No problem. My surgeon took a very big "chunk" because she wanted to make sure there were clear margins and my cancers were 9mm each but the lump was 5cm x 3cm x 2.5cm.

I wouldn't decide what course of action to take if the margins aren't clear right now. You're still too close to your surgery. You'll have time to decide on radiation (which was a snap for me). My rads started 6 weeks after my surgery. A mastectomy is a big step. Remember that reconstructive surgery can be done for lumpies. Your surgeon will have the answers and information you need. Do not decide anything without discussing it with her/him. And it's very likely that you'll have clear margins!

HUGS!!!!

kayfry

Soon, I hope! For both of us.

kayfry

I'm told the results should be in 5-7 days, and my surgeon makes a point of calling his patients with results as soon as he gets them (which I greatly appreciate!). Since my surgery was on Tuesday, I'm not expecting to hear anything before Monday, possibly Tuesday. It seems like a long wait . . . I think you're right, choices will be narrowed down once results are in, and that can only be a good thing. I hope you get good news today!

BBwithBC45

I just got off the phone with the surgeon's office - still no results. They called down to pathology to check. Again, I've been told to call tomorrow.

I would have preferred if they told me to call on Friday from the beginning, and not in 48 hours since the Monday surgery. It feels like torture.

kayfry

PontiacPeggy, thanks. This is helpful and a bit calming. Yes, my nipple seems to be a bit downward facing too, now, which I guess is a result of the chunk being taken out at 6 o'clock and the small breast situation we share. Before my LX, in anticipation of it, I had found some bras I really like (after spending a lot of time on wonderfully helpful boards like this one), and I bought a few. I'm currently wearing a Coobie comfort bra, but with pads from a different bra called "Handfuls," because the pads are a little softer and nicer. This bra, similar to an extra-comfy sport bra and not made specifically for post-cancer surgery, is amazingly comfortable, better than any other bras I've ever had—I wore it to surgery and home from surgery, and have had it on 24/7 since, which has helped my comfort level a lot. With the pads everything looks fine, and since I'm used to wearing lightly padded bras all my life since I'm so small on top, this is fine with me. I do know that reconstructive surgery is available to get the best cosmetic result after lumpectomy, and that's good to know. I'm a patient at Johns Hopkins and I have great confidence in all the expertise there, from my breast surgeon to the radiation oncologists to plastic surgeons. If I have as long as 6 weeks to decide on course of action before rads need to start, that would be a little less pressure. And I'll have my pathology results by the time I see my BS for follow-up 2 weeks post-LX, so I guess that will be a time for questions and answers. And decisions. Thanks so much for the encouragement, it really helps!

PontiacPeggy

kayFry, I believe that usually rads don't begin until at least 6 weeks post surgery. You need to heal. I was extremely lucky, I had my surgery on Wednesday and my surgeon called Friday evening with my path report. Made for a better weekend. Going to Johns Hopkins - doesn't get better than that. BTW, when I was going through rads, I went braless - that worked best for me since my underarm was still very annoying.

KayFry, you might want to update your profile and make it "public" so we will know what you've been diagnosed with, your treatments, etc.

HUGS. Just breathe!!!!!

Moderators

kayfry, welcome to BCO. Please keep us posted! We're all here for you.

shelleym1

I just don't know if I can do this. I almost feel like giving up. Everyday I feel worse and worse after surgery. And the uncertainty.

I know that I'm supposed to consider every day a gift but I am struggling.

PontiacPeggy

Shelley, call your surgeon NOW. Do not delay!!!!!!! HUGS!

shelleym1

My pain is fine it's the anxiety and depression. I'm just worn out mentally.

ElaineTherese

shelleym1 -- are you still waiting for your biopsy results? You'll feel better after you get those back. My nurse navigator called this morning; I feel better (though I'm shocked that they took out 20 lymph nodes). In the meantime, can you do something about your anxiety? My medical oncologist prescribed Ativan for just these trying times (it also helps me sleep).

PontiacPeggy

Still call her/him. Your surgeon can help you!!!!!

Nash54

shelleym1...you can do this. Did they give you anything to take for anxiety?