Lumpectomy Lounge....let's talk!

Hi ladies!

Just had my lumpectomy and 4 nodes removed (3 sentinel 1 axillary for insurance) in NEW YORK. I live in Florida.

Nodes all clear, margins too except two that show hyperplasia. Not sure what that is.

WORST part, a GIANT HEMATOMA. Doc says "no one what causes those, but man yours is big." He tried to aspirate but blood was too coagulated and thick to make it through the needle. Sent me back to Florida for a week to see if blood would thin for aspiration. Flew back to New York. Tried to aspirate it again. NOPE.

Sooo, he took out all the top stitches and put his hand in my breast. Put a bucket next to my breast and drained so much blood out it looked like a QUENTIN TARANTINO movie. Uggggh. Relief was almost immediate though.

Followed up yesterday with a different surgeon, here in Florida to check the open wound..well with HER NURSE. Apparently, a surgeon that didn't participate in your surgery really can't be bothered taking care of you, even if your surgery was in New York and NOW you need wound care in Florida.

I have an appointment with a Medical Oncologist here in Florida. She is in the same GROUP as the uncaring Florida surgeon.

BUT I'm most likely only looking at radiation, pending the oncotype result. Do you think I should use a MO in that group or go elsewhere? They do seem disorganized, losing path report, saying they received it, not being able to locate it, me calling the pathology group who said, "We didn't send it there." Curious behavior.

What am I looking for in a Radiation Oncologist? Does anyone know what to ask as I proceed to the next step? Are there different methods used? Do they all work?

OVERWHELMED ovah heah....

Thanks

LillianM: I have had 3 lumpectomies on the same breast. Two were to clear the margins. I'm not sure if you are IDC or ILC? ILC, I've learned, is difficult to get clear margins. In any case, I will have to have a umx on March 24th, with immediate DIEP reconstruction. My biggest fear is that they will find bad stuff in the left breast when they do the reduction, because I only have enough tummy for one breast. In terms of pain, I have to say other than the first week of the first lumpectomy, I have been fairly comfortable. Didn't need anything more than extra strength tylenol. I recovered pretty quickly too - about 2.5 weeks post surgery I was feeling pretty normal. After the last surgery I developed a large seroma, which the BS had to drain. I suspect that was a result of how deep she had to go. Unfortunately, the last pathology report confirmed that my bc is multi-focal, and the margins are still positive. The foob is a rotten apple and it has to go.

My first instinct, after researching ILC, was to have an immediate umx. I was talked into lumpectomy, because my BS said I could always have a mx later, but once it was gone there was no going back. I was not told at that time how hard it was to get clear margins with ILC. Also, going into the 1st lumpectomy, they were expecting a tumour about 1.5 cm. It was actually 4.5 cm (and probably >5cm, given that they can't clear it). Given the size, and knowing what I know now, I should have insisted on a mx back in Dec., rather than allow the BS to try and clear the margin. The 3rd lumpectomy was something I requested, a last ditch attemp to clear the margins prior to the March 24 surgery, simply because I thought it was worth a shot, rather than sitting around waiting for 16 weeks for the mx.

And to add insult to injury, they are now telling me I am in the grey area, and may have to have rads after the mx. I"m pretty sure they have decided to do that, because they have already consulted with the PS about potential damage from the rads to the DIEP flap.

So, long story short - if the good breast has even a hint of anything, it's coming off. And if my sister ever gets a dx of ILC, I will advise her to get it off. Good luck - hugs

lol. Hopefully it was just a one off. It's not like it never ever happens, and I had no problem getting aroused, it's just rare.

Lillian, I had a lumpectomy followed by re-excision to get clean margins. Essentially, 2 lumpectomies. The pain wasn't too bad--I took a narcotic for a couple days. But I ended up having some complications, including a serious infection which prevented me from going back to work for 3 weeks.

I had a BMX 4 weeks ago and recovery has been a challenge. I took narcotics for pain for 2 weeks, mostly in the evening or at night. I am still using a sleeping pill, otherwise I simply don't sleep. I have had nothing but complications in the right breast (the zombie side) ,lost a lot of tissue to necrosis (tissue death.) Thankfully I didn't have traditional reconstruction with it because it I had, I would have been hospitalized and had more surgery. I am seeing my PS every 2-3 days now, to make sure it continues to heal. The tissue looks healthy now, but it's going to take a long time for the area to close up.

I hope I haven't scared you to death. Most people don't have all these complications. Neither my BS, nor my PS can tell me why I have had all this stuff. For some reason, my right breast just does NOT want to be bothered. I've tried to keep my spirits up, but honestly, I feel traumatized by this whole experience. And I'm not done yet--I still need to have a hysterectomy at some point. It's going to have to be in the fall or winter next year--I just cannot deal with another hospitalization any time soon.

I had an interesting encounter in Walmart today. A lady asked me if I had cancer, pointing to my beanie. I told her I had been fighting breast cancer for several months. Then she asked, "Why is your stomach so bloated?" Now, maybe I should give her a break. She was of a different culture than me. I'm a pooh-size girl with a big tummy. I should have just said I was 8 months pregnant. Instead, I told her they chopped off both my breasts and I don't know where they are now. You should have seen her face! She couldn't get away from me fast enough.

Poodles, perfect reply. I cracked up. Ask a question you shouldn't ask and you deserve whatever terrible answer you get. Yours was wonderful. I hope you laughed as she tried to escape you!

HUGS!

LTFly and Molly 50- in regards to being intimate I just find that in the scheme of things it is not that important to me right now. I still love my cuddles when I can get them ( in a long distance relationship) but making love doesn't really appeal to me right now. In fact my boyfriend made a sexual comment to me on the phone just this week and I thought " how can he be thinking about sex when I am going through radiation". I think it's a combination of perhaps feeling less attractive than I did before BC and needing to put my energies into getting batter. When you look at what our breasts signify in terms of our sexuality and attractiveness no wonder we may feel a bit less " desirable" ( and I am fortunate enough to have kept my breast).

Only piece of advice I can give is to cut yourself some slack. We are going through a life changing event here and each of us will respond in a different way which is neither good or bad...it just "is". Cheers!

LTF - I have a healthy sex life with my partner, and he never looked differently at me even at my worst through Chemo...eventhough I felt unattractive and hideous at times. I never had trouble 'getting there' BUT I noticed through Chemo it did affect things a little...not alot. so just remember, your body is going through so much!! and you are mentally as well. You are fatigued. I was so very sick for months. AND I think you will do really well next chemo...really dont think you'll struggle with it. If anything, Im finding 11 weeks PFC, the intimacy has become more difficult, I guess due to the fatigue more than anything, and 'getting there' has been so much harder and I never had problems. Not sure if Arimidex has anything to do with it or its just the WHOLE thing!!! So just be kind to you..

Melclarity, did your surgeon say DIEP or TRAM flap? There's a big difference and that's what I am struggling with as well as the reality that it's a huge surgery with a long recovery. My PS only does TRAM which he would use half my abdominal muscles. DIEP doesn't use muscle but you need a surgeon experienced in it. Do your research before deciding. Implant is a much easier surgery but can mean multiple surgeries in the years ahead. Did you have radiation? That makes implants more difficult due to the possibility of capsular contracture. I have read that fat transfer can help the tissue accept the implant. Anyway your recovery will be different because I had a tissue expander not immediate reconstruction.

Molly - my co-worker had the reconstruction where they use the abdominal muscles, and she regrets it. She said she can't do anything that involves the core. I don't know anything about DIEP or TRAM, I'm just passing along a story.

LTF - Thanks, everything will really settle down, I think when you sit back and think, you go like "Wow" Im going through so much, and really so much energy goes into trying to maintain normality, so youre actually doing OK! I became quite introspective on my journey, strangely my fight was not wanting to stay home and be with me...and yet thats exactly what happened to me, turned out to be what I needed to do for me. I think it really was just in the acknowledging of how I felt in any given moment, good, bad or indifferent. But also feeling OK, and honoring its a damn hard journey!!! Not all men or even people in general are sensitive to any of it, especially if they havent been through it, they just cannot understand the complexity of it on every level. I think at times when my Partner wanted to be intimate and Id be thinking OMG really?? but for him, he still saw me as attractive, it didnt change for him, it wasnt him belittling what I was going through, or even putting himself about me, he just wanted to love me. They really try to just maintain normality I feel, because they feel so helpless and sympathize but its different. Hang in there!

Molly - I'm 99% sure he does the Diep Flap, he's actually a General Surgeon of many years, a reputable one here in Melbourne, apparently his work is amazing. I'll be doing alot of research but once I have my meeting with him in May. Yes I had radiation 4yrs ago, couldnt have it this time. So that's why mx seems the way to go and be done with it. As much as I want this to go away and just get on with my life, I cant, I will have to make this decision. uuugh.

MLP - Thats interesting what your friend had done, Im hoping this will be alot easier in some respects. I think just knowing I have no BC doing the mx knowing I dont have major urgency helps right now.

Molly sounds like a plan. Yes I know its about a week in hospital here for that and a long recovery. So am trying to factor it all in as wont be able to work etc., uuugh

mlp I'm with you Tuesday!!! Beautiful walk!!

ChiSandy, here's who we all are left to right: NancyHB, Maureen1, Suz-Q, CWayman650, PontiacPeggy, ChiSandy, GypsyJo.

It was a grand time. Very nice to meet Suz-Q and Sandy in person after so much chatting. Of course, we never stopped talking. It's a relief to know everyone gets what we're going through and we share what's going on now and how we're coping (or not), looking for answers at times.

We're all so different yet the same. A very brainy bunch, too! Hoping we can get together at least once if not twice more before I move to Spokane. But I'll have room for any BCO'ers who want to visit!

Sandy, thank you for making the effort to come all that way. GypsyJo travels the furthest but stops at her brother's so that works well.

FUN!!

HUGS!

Glad the weather didn't keep you all from meeting! Love the pic!

Octogirl