Lumpectomy Lounge....let's talk!

First I want to thank everyone here. I don't have anyone to talk to about all that is going on. Family listens but I am the first to have BC so they have no answers for me. I love that there are so many that are so helpful here. I don't write much but I sure read.

My RO wanted me to have a mammogram before I go for my rad simulation on Friday. I did that today. I was so nervous because I am still sore. The tech was so sweet. She did her best not to put me in much pain. I told her I understood it had to be done and I would be tough. It wasn't too bad. The doctor read it before I left and said everything looked good and to come back in 6 months.

I was so glad that someone on here asked about the simulation. It helped a lot. I can't remember who answered about what to expect but thank you.

Marie - Strep, yikes. Poor little guy. We went to Legacy park. It has 10 miles of paved bike paths (walking paths) in the trees by Trinity river. It was really nice! But, probably best I didn't see you as I have a cold today. You don't want to feel lousy your first few weeks of rads because that is the good energy time! I'm glad it was quick and easy. Regarding Miaderm, I think I went through 4 tubes. It's what the PA recommended for fewer skin problems, and I figured he was the one who treated the skin problems and would know what worked. Some people alternated between Miaderm and Aquaphor, and he said they did fine, too.

Amy- so sorry about your PCP. It's nice that she shared that with you though becasue as you stated earlier- she can relate to you in such a different way now. BC stinks! Praying (and, taking my own music to listen to while waiting) helped me get through rads for sure. I prayed for family, friends, BCO sisters and the docs and techs at my center.

Hello Everyone :Guess I qualify for the LL after having 3 lx. The reason for 3 was a vain attempt to achieve clear margins, and I'm pretty sure the lack of success was due to the tumour being lobular in nature. That being said, I'm not sorry I started with the lx route - if it had worked the first time, the foob wouldn't have looked too bad - just smaller and perkier than the good one. I am disappointed though that my BS wanted to do a re-excision to try and clear the margins. Although hindsight is 20/20, if I had understood the nature of ILC better, I would probably have insisted on a MX then rather than try for clear margins . That being said, my experience with lx has been a relatively pain free one. I tolerated the surgeries well (day surgeries), and my foob was actually numb after the last one - probably no nerve endings left in the old girl. The worst part was the radioactive tracer injection - and as someone said, it was really no worse than a bee sting. The core biopsy, prior to the lx was the worst part of the journey, and probably exacerbated by how frightened I was back then. I'm getting ready now for the March 24th MX - that is going to be a wild ride, I'm sure, with immediate DIEP flap recon. I was started on AI (Letrozole), back in mid-December, and if the margins had been clear, I would have gone on to Rads, so I don't think there is a specific sequence to hormone and Rads. I won't have chemo (apparently does not work so well on ILC). Sending everyone positive, shiny thoughts, and thanks for sharing and being so supportive.

Sandy, i started out with lumpectomy. The only reason I ended up with bilateral mastectomies is that we found out I have two gene mutations which probably caused the cancer. My sister had a LX 3 years ago and she has done very well.

Sandy, Do some research on reconstruction before you make the jump to bmx from lx. Lx plus rads has an equivalent survival rate to mx. Even though you generally can skip rads after mx sometimes you still have to do radiation and that can narrow your options for reconstruction. I would get a referral to a PS and talk about your recon options before you go any further in the decision making process. You will lose sensation with or without a nipple sparing surgery. You may end up with multiple revision surgeries and will probably have to have Tissue Expanders in place for a while prior to your exchange surgery. Look in the surgery forum to start. You can also ask me any questions and I will try to answer. I have not done my recon yet. This is a long, long road.

Molly, you are so kind to tell us your experiences. I know I always learn something new from your posts. Thank you for sharing with all of us.

HUGS!!

Molly, you're very welcome. I think that's one of the strengths of this site is that we share what we have learned and experienced so those coming after us aren't surprised and are prepared as much as possible. We're very lucky to have such caring people here.

HUGS!

MLP, i still feel self-concious with my wig, but I get compliments all the time. I've had quite a few people ask me where I get my hair sone, LOL

I wish I could get comfortable wearing wigs, because I really like the way they look, but even my most comfortable one starts driving me crazy quite quickly! That said lots of people do wear them all the time without problems, I hope that will be your experience MLP.

I was never told to avoid caffeine, I hope I don't have to because damn I need my coffee! I don't really drink anymore, I think I've had one glass of wine since starting chemo in January, and maybe two glasses of wine total since I was diagnosed at the end of October! I tend to limit my sugar anyway, I'm a pretty healthy eater, but I need my coffee!

Glad you are doing okay praline!

Hello Ladies. I'm new to the Lounge and I have a concern. I am about 5 weeks post lumpectomy. I did very well and felt very little pain up until about a week ago. I am starting to feel moments of zapping pain and general soreness and aching that I did not feel before. Also, what concerns me most is that my skin is starting to appear a dark pink and warm probably about 5-6 inches away from the incision. Has anyone had a similar experience? I'm thinking I may have over done it folding blankets or carrying the groceries inside. The other thing that crossed my mind was an infection?? I have an appointment to see my MO on Thursday, I can ask her then. But just felt like asking you all first. My Onco test results? should be in by then as well. But I am thinking positive and praying that I start my rads next week.

Thanks for listening. It's been a few weeks since the anxiety and fear got the best of me. But I already feel better just being here.

Take care! Prayers, hugs and well wishes to you all.

hi queen Sharon!

The zapping pains are quite common, my surgeon told me that they are caused from nerve endings cut during surgery, and that they will come and go for a while. I am now almost three months out of surgery and they certainly do come and go.

As for the dark warm spot, that is a bit more concerning, because warmth can often be a sign of infection. I never had anything like that so I can't say for sure but you should definitely monitor and maybe even give your breast surgeons office a quick call to see if it should be looked at before Thursday?

I did not do oncotyp testing so I can't say anything about that, but I hope yours comes out low!

Hi Pontiac Peggy and Loves To Fly,

I was thinking that the zaps were normal healing. I too thought infection but since the incision itself is looking good, did not know if the inside could have an infection. Thanks for your input. I will see if I can get in to see the surgeon tomorrow.

I am a disabled Veteran and my primary care facility is the Veterans Administration Hospital. I've never had a problem with them until this occurred. It took them forever to refer me to a civilian surgeon. The lady in charge of referring me and handling the paperwork was unreachable. There was so much red tape and delay, that I was fearful of my cancer spreading. I guess I will never know when the cancer spread to my lymph node but the wait couldn't have helped.

While I was waiting for the VA to get their head out their AZZ, in Dec. I signed up for health insurance at my job. I have since dumped the VA and am now seeking treatment with MD Anderson. I have only had one visit with my MO but she is awesome.

Thank you ladies for being someone I can talk to. My partner/girlfriend works out of state. She had ovarian cancer about 15 years ago. She thinks I'm being a big baby and has no compassion for what I'm going through. If I was being a big baby I would be on here 24/7 whining and complaining. Needless to say, we are no longer talking. On top of it all, we are in the process of ending a 17 year relationship. So I appreciate having someone to talk to. Sorry if I went on and on. I've been keeping it all inside. I was determined not to let her negativity affect my recovery, but this last week of pink/heat breast is telling on me.

Thanks again.

Sharon

Queen_Sharon, how awful for you! Bad enough fighting the VA to get the treatment you deserve and need, and then having to cope with a very unsupportive partner. That's overwhelming. We're here to support you in any way we can. There are lots of shoulders here ready for you to cry on, if need be. And we are great at answering questions. Mostly, we just care and have open arms. And you are NOT being a big baby!! Breast cancer is scary (and your ex-partner wasn't scared?). We all have had meltdowns and come here to be picked up. And we'll pick you up, too. Send lots of love and positive vibes your way and hope your Oncotype is LOW LOW LOW!!

HUGS!

Thanks HappyHammer, I just went and looked in the mirror and it looks worse. I will definitely have it looked at first thing in the morning. Thanks to everyone for their advice. I think I was in denial and hoping it would go away. DUMB idea!

Hugs to all! I feel so much better. And most of all, I do NOT feel alone! You ladies ROCK!!!!