Lumpectomy Lounge....let's talk!

Zoritsa

I hope no one minds if I jump on in here. Friday will be a month since I've had my lumpectomy, and I go for my radiation markings in the morning this Friday. The lumpectomy itself went well, nodes clear, clear margins, oncotype dx was 14, so no chemo, and everything has healed nicely. My breast is still sensitive, especially where the tumor had been. Does anyone know how long that might last? It's not bad, I just wonder if it will be more sensitive during radiation, or if radiation will bring other sensations. I meet with my MO next week, and I guess he's the one that may discuss and prescribe the hormonal therapy (talked a bit about with RO, but he never said who would ultimately be the one to prescribe it and when).

Thanks for letting me ramble, and I hope I can get to know more of everyone in here. (btw, Brenda is my real name, married, 43, two boys,one daughter-in-law)

Horsegirl

sweetmamaj: What you describe among your son's friends has been my experience as well. Most teens only talk about surface things and change the subject when tough things enter the conversation. Especially the boys! I lead a group of teens at church, And it is tough for them to go there. I shared my diagnosis with them and got no response. Zero. They moved on to jokes & nonsense. It was surprising, because I thought "what if one of their friends needs support?" This summer we've been teaching them how to actively listen to others and draw them out, but still a long way to go. I think it's a reflection of our culture. Sad, because we know that kids out there - like your son- are dealing with hard stuff. Empathy is an important life skill

One thing I've learned through this experience is that people are all over the map in their response to someone with BC. The less than helpful responses seem to come from that person's own fears. It's surely not about me!

Hugs to all who have received results or still in the waiting room. It seems to me that as soon as we get any information we immediately return to the waiting room again! I think I am still waiting to "get to the bottom line". An illusion. I'm starting to realize it doesn't work that way

Headed to second opinion MO today at Hopkins. Have done as much reading & research as humanly possible so I can ask questions. Mostly I'm just exhausted from lack of REM sleep due to constant hot flashes. Can feel that I'm not myself. I'm foggy, grumpy, maybe even a little desperate. Nightmares last night about dying -. Where did that come from! Geez... Lack of sleep just intensifies everything else about this disease.

octogirl

welcome to our group Zoritsa! The best club you never wanted to join!

It is the MO who will prescribe hormonal therapy so definitely put that on your list of questions to ask. I can't tell you how long breast will be sensitive but I feel like mine always will be!

I hope rad goes smoothly. Let us know...

Octogirl

queenmomcat

Zoritsa: My second lumpectomy was a month ago today, and I'm still most definitely sore! But the pain's receding for me--hope it is for you as well? I'd guess that if the RO's willing to start rads next week, then [insert gender-appropriate pronoun here] considers you healed enough for radiation.

(Edited to add: I was diagnosed early enough (Stage 0) that my oncology team didn't feel the need to biopsy any of my lymph nodes. So I'm not dealing with that part of recovery from surgery.)

123JustMe

Horsegirl,

Please post what recommendations John Hopkins makes for you!

Sweetmamaj

Hi Zoritsa, welcome to the lounge! Glad to hear your good news about nodes and margins!

I am still in the post Lx waiting period so I cannot offer any personal experience about breast sensitivity during treatment, but Octogirl and Queenmomcat both gave good input. Ask away to your MO and RO--and ask, vent, share with us! You've found an awesome and amazing group of women here.

Sweetmamaj

Horsegirl, i agree that it's probably cultural--especially with boys--and that it's helpful to remember that people's responses are sometimes coming from their own fears and insecurities, and are not a reflection about how much they may or may not care about us. You said it well!

Good luck at Hopkins!! We'll be thinking about you!

PontiacPeggy

Zoritsa, Welcome. Sorry you're here but this is a wonderful group. The most supportive and sympathetic ladies you'll ever meet. Your breast will be sensitive for several months. It won't necessarily hurt but you'll know it's there! Radiation generally starts at least 6 weeks after surgery. If you have good range of motion with your "bad" arm, you likely won't have any problems at all. Most of us find that the SLN incision is the most annoying thing going. It doesn't hurt but bras rub, clothes rub it. Just a pain in the pitutty! BTW, you will probably want to avoid underwire bras while doing radiation (I went braless but I'm a very small A and realize if you actually have a SHAPE that that may not be a good option).

So glad that all the margins were clear and the oncotype good. That's always a huge relief!

BTW, no one was more amazed than me at my 6 month post-radiation mammogram that it didn't hurt. So my sensitivity was gone by then (about 9 months after my lumpy)!

Your MO will prescribe any AIs or Tamoxifen (depending on your menopause status). All my oncologists seem to coordinate everything very nicely which is a huge help.

Ask your questions, we'll try to answer them or point you in the right direction.

HUGS!!!

Molly50

Well, I am back from my appointment with the surgeon. I had a total of two axillary lymph nodes involved out of 14 removed. The bad news is that I have extensive vascular /lymph spread so I am scheduled for a mastectomy on the 25th of this month. I see the PS this afternoon. I am reeling a bit from the news. I asked for a MRI to check my right breast just in case. She's working on getting authorization.

Welcome Zoritsa. Sorry you need to be here but this is a wonderful group of ladies you found.

PontiacPeggy

Oh,, Molly, I'm so sorry. That's awful news. Gentle hugs. There's nothing I can say to make it better except that we're here for you to support you and give you a shoulder if you want one. Very wise of you to request an MRI on your right breast. You don't need anymore surprises. I'm glad you could get in to see the PS so quickly. That's a huge decision to make when you haven't even processed needing a mastectomy.

Sending lots of love your way.

HUGS!!!

Sweetmamaj

Oh Molly, I am so sorry to hear your news! Giant, gentle Hugs! wow, and 14 nodes removed--of course you were so sore. Did they at least remove the drain? Glad you asked for the MRI; my BS ordered a bilateral MRI W Wo contrast before the Lx, and it was neg. I hope they get that authorization soon. Please let us know what we can do for you. And please accept our virtual hugs--as Octogirl me that everyone was with me in the stands at my son's meet, as we'll as the plane ride home, know that we are with you during your appointmnet this afternoon, the Mx on the 25th, and every step of the way. Take good care of you. More hugs!

Horsegirl

Hugs Molly! That's so hard to hear and take in. A real curve ball. Hoping you have someone to sit with you or connect with you today - a good listener and hand holder. As hard as it is to get even more info from PS, it beats spending days in the waiting room. Hoping your doc helps you understand what option is best for you. Good on you to check out every thing you can. Hope you can get the MRI soon.

I'm wiped out by 2+ hour consult at Hopkins. The MO was great, so detailed and considering all possibilities. The visit was helpful, but no decision yet. He gave me some more research to review, and I got some nuanced understanding that I'll post in the HER2 sectiion of boards. Absolutely felt heard. He'll give me his reccomendation after their pathologists review my slides. Back to waiting, but feeling an inch closer to the right direction.

Molly50

Thanks for the hugs horsegirl, Peggy and sweetmamaj. I fixed my profile it should have said 9 nodes removed not 14. The Sentinel node was macromatasis with a 1.7 cm tumor. The other node was micromatasis only 1.5 mm. There is extensive vascular spread of both DCIS and IDC. She wants to do rads after mastectomy and waiting for the consult with MO to see if he wants to do chemo. In the meantime I am returning to work on Monday.

PontiacPeggy

Molly, try to relax for the rest of this week and heal. You've been blindsided but it sounds like you have great oncs guiding your care and that really do want what's best for YOU! I know it will be difficult to just do nothing and keep the mind from running wild, but give it a whirl. Perhaps a bit of fatalism might help. Worrying isn't going to change anything. (Almost impossible to do). If you need to keep the brain occupied, make sure you are covered for while you recover from your mastectomy. You'll want help for awhile I'd think. Probably going back to work will be a help. Just allow yourself the luxury of getting well. Hope the oncotype comes back decisive - one way or the other! Nothing worse than one that is wishy-washy.

HUGS!!!

octogirl

Molly50, I also am so sorry to hear this news...you are in my thoughts, here on my first day back at the office. I definitely think you need to insist on the MRI.

Love and gentle long hugs coming at you, let us know what we can do. Cancer sucks.

123JustMe

Molly 50,
So sorry about your lymph node involvement! Giving gentle hugs! And as Octogirl says "CANCER SUCKS!!!"

Nash54

Molly sorry for your latest update.  We'll all be thinking of you on the 25th.  I'm sure you are still processing...everything seems to be hurry up and wait.  I know it's hard to believe but this will soon all be behind you.  

Zorista hi and welcome!

plumster1

Molly, so sorry for your news! There is just no good spin for probably how you feel right now. Ugh!!! But, it sounds like all the right steps are being taken. You will get through it!!!!

Hugs!

Sweetmamaj

Ringelle, just checking in with you--how is everything going? I hope your search for counselors for your daughter was fruitful, but if not, I'm sure we can help you with ideas to find one.

Did you find out when your BMX surgery date will be? Please write when you can; this whole process--the unexpected new diagnoses, the personal decisions, everything, must be so overwhelming for both you and Molly and others. And the worry about how our kids are affected by this compounds our fears--whether your child is 10 or 22--we want to do the "right" thing. Problem is, no one told us about how to handle this, so we have to do our best, trust our instincts, and reach out to sisters.

Many Hugs to all! xoxox

octogirl

Hi all:

well, first day back at work was not a total success for me. My staff seems to have dug in and are dealing with the increased work load just fine...I had a few productive hours and meetings, but then really started hurting a LOT in pm. Took two ibuprofen, didn't help much so I ended up leaving at two pm. So I got home, and now that I am lying on the couch it barely hurts at all. Oddly, it isn't the 'bad' incision that hurt so much, it was the one for the SNB. I am wondering if it is sitting at my desk and using the keyboard in a certain position?

To make matters worse, I drove today for the first time, and the seatbelt hurts like hell and hits in just the wrong place! It wasn't an issue when I was a passenger, but on that side it hits in a different spot. As a driver, not so good. I ended up tucking the belt under my left (good) arm, driving slowly and keeping my eye out for cops on the way home (shhhh). Fortunately, it is only four miles from home to work and I don't need to get on freeway, but still, will have to figure out some work around for that. I am also fortunate that I have the flexibility to come and go as I want, so leaving early isn't a big deal. Still, I hate feeling like I can't even get through the day! :-(

Hugs to all. xoxox.

Octo

123JustMe

Hi Octo,
2nd day of work for me. I think part of the problem with my first day back was more mental than actual pain. Plus I love naps! . I am sure as you build your stamina it will get better. {Hug}

PontiacPeggy

octogirl, you have discovered the untold tale of woe of BC: the SLNB incision. It is a ROYAL PAIN for most of us. It doesn't make any difference what you are doing, it rubs on your clothing, your bra, your side, the sky or whatever. You just need to figure out what irritates it less. I find tight armholes are an issue even now a year later. I've had to "retire" some of my tank tops because of that danged thing. Bras can be problematic, too. Underwires can rub, even just the wings of the bra if they are a bit too high. I doubt that using your computer is the problem. And because those weren't enough irritants, I find that if I sweat it will sometimes sting. This is after a f*cking year! No, it doesn't hurt but it is soooo annoying. End rant

BTW, you are doing good just getting back to work. Your body is still frantically trying to heal and is using all the energy you have. Consequently your well runs dry long before you think it should. Please rest as much as you can. In a few weeks you'll be feeling much better and have lots more energy, I'll bet. Don't push it. Do what you did and go home from work, nap, relax, do nothing.

I don't have a thought other than putting a pillow or soft stuffed animal over your breast to protect it from the seatbelt. I'm sure someone will have a really good idea for you. Mine's rather lame.

Take care of yourself!

HUGS!!!

bluedog

Hi, all. I've been lurking here for a bit, as I'm scheduled for a Lx in September. I've been doing neo-adjuvant chemo -- only 3 more taxols to go! Woot!

Octogirl, I have a port for my chemo, and the seat belt was really irritating it. I ended up ordering a kid's seatbelt cover. It's plush, about 6 inches long, and just velcros around the belt. It was $4 or so from Amazon. Maybe it would help?

PontiacPeggy

123JustMe, I think you could be right. It is mentally hard to go back to work. Glad it is going okay.

HUGS!!

PontiacPeggy

Bluedog, we like lurkers, too! You must be happy that the end of chemo is in sight. And won't it be good to get that cancer cut out of you?

Your suggestion for the seat belt sounds good to me.

Where are you located? It doesn't say in your profile (if you want, you can make that public too). You might find new friends nearby!

Glad you found us. This is the most supportive and comforting group you'll ever find. Let us know how we can help!!

HUGS!!!

Molly50

Octogirl, my problem is the passenger seat belt. One of my son's caregivers made me a few different sized pillows. I use one between me and the seat belt and I use one to avoid rubbing the snb area with my arm and another to protect my lefty from my grandson.

Sweetmamaj

Octogirl, my incisional discomfort seems to be dependent on movement--in your case, I can imagine that the seatbelt rub on the R breast, along with the keyboard aggravated the healing. Are you right handed? I am, and having a L Lx breast, the use of my right hand does not cause problems. It's weird, but it seems how my clothing fits and "moves" with me is one of the biggest factor for discomfort. When my breast is supported -because it is still fairly swollen to a cup size larger--with little rubbing of the incision site, there is little problem with that incision. But with the SNB incision, a sleeveless top works best to keep away the irritation.

I take Ibuprofen a lot, and it usually helps. These days, if the ibuprofen doesn't do the trick, I have to assess if maybe I have more stress/anxiety pain over physical pain. If so, then Ativan or Valium or similar benzo might be in order.

And regarding the cops...I flew with my BC reports, copies of results, and flyers from the BC clinic---all in case I needed an ace. For whatever reason. I didn't expect to have any problem (but since Hertz will not allow 17 y/os to drive their cars, I had to suck up and drive several hundred miles), but had those folders and flyers ready to be pulled out in a hot second! I thought: thank god for those full-color folders and obvious sheets about breast cancer.

Maybe try not to think of it as if you couldn't get through the day; try to look at it as if you DID get through most of the day!! My first day back was Monday and I only worked 4 hours. I was mucho happy with that.

We are thinking about you! Hugs and xox

bluedog

Thanks, Peggy! I added my location, Chevy Chase, MD (suburb of DC) to my profile. Hopefully it will show up. I've learned so much from everyone here -- thank you so much.

PontiacPeggy

Thanks, BlueDog. There is a lot to learn from here. You'd think breast cancer would provide very similar experiences but it doesn't Some things are the same but so many variations. We're glad to help. Just keep asking! And hang in there - chemo is getting done!!!! (Stay cool and dry!).

HUGS!!!

Vicks1960

123justme If you are 'mature enough' for medicare, the oncotype should be covered. Medicare and our supplement covered all my expenses.

Vickie