Lumpectomy Lounge....let's talk!

StillSurprised

Thank you plumster and Molly for replying! Seeing my oncologist Monday so will definitely mention it. Hoping it's just fatigue plus work stress

bjclaywell

Hi all - been a hectic week for me at work with new hires (who I have to train). Got a long letter from my health insurance about why they denied the PET and CT scans...so now I'm headed for some kind of bone scan (no idea...too tired to figure it out). Hopefully can get that scan done soon as I'm meeting with the MO next Thursday morning to discuss my Oncotype score...

Rina - I didn't know about the wire locator thing until I actually got to the hospital - they gave me a valium (wheeeeeee), and then said "you know the procedure, right?" I said no, so they explained everything to me. Also, no blue dye for me - just radioactive dye with the Geiger counter thing...my BS said they have had too many negative reactions to the dye, so they quit using it.

Pennsygal and Kitty - welcome to our group! We are AWESOME WOMEN!!!

StillSurprised - you should definitely check in with your BS, or at least your PCP if you have one...

MLP - ugh, the sleeve...I'm sorry. How are things feeling now?

Peggy - never far from my thoughts, and always in my prayers!

Everybody else - sorry to "group" you in here, but I have been reading and keeping up with everyone - just haven't had time to post - been so tired after work and my daughter's homework is gearing up (first year in middle school) along with all the fun "drama" of being a tween...(blech). But I check on the board daily!

mustlovepoodles

BJ, I hate to say it, but I don't envy you. Having graduated 2 from HS, I am glad to be done with all of that stuff. No more girl angst for me!

I'm doing better today. Still tired, but I was able to get some grocery shopping done and DH took me out to Outback for a steak. Yum!

I called my BS this morning because I have thrush, likely brought on by the antibiotic I'm on. My mouth feels funny, tongue kinda sore and feels like I have mittens on it, and everything tastes weird. And I have a raging yeast infection. So I called the BS and told her about it. She called me in some medication for the thrush/yeast and changed my antibiotic (the culture came back showing that my breast infection is more sensitive to another drug.) So, 10 more days of the new antibiotic, 1 dose of Diflucan, and a bottle of Nystatin swish & swallow (which is some nasty-wasty stuff. I can't believe they give this to babies!)

The drain is working well. It's funny, when I raise my arm over my head, all this air comes out. Squeeeeeek! There is a very small hole and a large hole (1/2" at least) in my incision, which is still draining but not nearly as much. I'm only having to change the dressing twice a day now, instead of every 2-3 hours.

plumster1

Mlp- you have been through the wringer!!!

PontiacPeggy

Poodles, I'm a firm believer in the type of thing you experienced with your father. Absolutely explainable but it was real. I think it's rather neat that that cat seemed to appear so many times. Must have been a strong influence. I have told DH that his mother and father are waiting for him but never thought to give him a date. The hospice nurse thinks he might be waiting until our other son goes home. Possible. Thank you for sharing that wonderful story with us. I love it - warm and comforting.

HUGS!

Reader425

Outrunning, Yes, I also felt I was flying blind a bit ( how would I pick an oncologist??). I've heard good things about Dr. Croog. But I do like both the Hopkins affiliation and the electronic records. That must help and they always start there on each visit. Hope all continues to go welll!

Reader425

And more HUGS to you and your family Peggy.

mustlovepoodles

Entirely possible, Peggy. My grandfather (Dad's father) had dementia and a huge aortic aneurysm, but even at 88 he was a physically very strong man. After several years of trying to manage him in his home, the decision was made to have him placed. By that time, Grandaddy was completely out of touch with reality, but he was still active, eating, and carrying on. His doctor put him in the hospital for a workup, prior to placement.

After my sister and brother got him settled with some supper, they decided to go find some dinner at a local restaurant. They had no sooner pulled out of the hospital driveway when they got a frantic call from the nurses to return immediately. They turned the car around and parked it, but when they got up to his room Grandaddy had passed. My sibling and I have always believed that he somehow knew something and he was waiting for his grandchildren to leave. So he ate his catfish, corn on the cob, green beans, and pie, then tilted his head back and left this earth. That's how the nurses found him--sitting up with eyes closed, like he was sleeping.

Interestingly, my brother used to see Grandaddy sitting in his recliner, absent-mindedly stroking some unknown being while watching TV. Could it have been the old cat? We think so. That cat was the only pet they ever had, but he was amazing and my grandparents adored him. Perhaps Nappie came back to escort each one to the Great Beyond so they wouldn't be scared?

I will tell you this--if Nappie shows up here, I'm showing him the door!

PontiacPeggy

Poodles, I'd show him the door too! There certainly is nothing boring about your family! Love that story about Granddaddy, too. It's really sweet and Im quite sure your brother did see him in that chair stroking Nappie.

I'm sorry that DH is coping with lung disease - that sucks. One of you "sick" is bad enough but two makes it really hard. You just run out of the ability to prop your partner up since it takes so much just to take care of yourself and you've had so many things pop up with the infections, drains, surgeries, etc. It's just crap. You need a whole boatload full of hugs right now, too. So HUG HUG HUG HUG HUG!!!

mustlovepoodles

LOL, I tell DH we're a matched set. He has been so great through all this, even though it has just worn him out. I think he's looking forward to the weekend because I don't have any doctor appts!

PontiacPeggy

Poodles, it does wear one out having tons of doctors' appointments. Enjoy the weekend!! You really deserve it! If it's okay, have a bottle of wine or 10

HUGS!

Molly50

mlp, you need to write a book. The cat stories are wonderful and I love the beautiful description of your grandpa passing after a good meal. . I am sorry you have so much on your plate.

I think this whole thing is hitting me today. I saw the RO and have a date. Then my sister called me. The oncologist who agreed to look at my pathology reports asks his colleagues to give their opinions. They were split 50/50 on chemo. So he wants my slides to be looked at by their pathology department and have a real second opinion consult with me. I was busy all afternoon getting authorization and then making sure the hospital where my surgery was can easily get my slides off to the second opinion. So chemo is up in the air again. The sticking point is the LVI. He wants to see how large the cancer in vascular system was. This is why I decided to go this direction. I don't want regrets.

Reader425

Molly, I'm so sorry this continues to be so complicated for you (not that it is ever really straightforward ). Thinking of you.

Molly50

Thank you, reader

PontiacPeggy

Molly, I agree that Poodles should write a book! And I'm sorry that you are still up in the air about chemo. I think you are doing it the right way. Once you get all the information possible, you'll be able to make an informed decision. Then, whatever you decide to do, never look back. Don't second guess yourself. I hope you can feel me in your pocket because I'm there supporting you. Try to have a good weekend!

HUGS!!

Horsegirl

Welcome new posters! Rena, you have an especially clear way of expressing the feelings we all navigate. Hope all of you find encouragement & helpful suggestions here, and share in return

Mlp: love the cat stories. Inspiring, not weird. Would welcome all of my ghost cats to come back and stay with me

Rena, maybe you won't need tge wire locator, but for the record my BS didn't talk to me about it. It was his pre-surgery nurse who did. Don't hesitate to call him with that question.

Molly50

Thank you, Peggy. I definitely feel you in my pocket.

plumster1

Molly- so sorry you are in a continued limbo period. However, I think it is so positive that you have all these doctors going over your case with a fine toothed comb. What ever they recommend and you decide will be well advised and thought out. That is all we can hope for.


Peggy- seems like you are doing so well. Positive thoughts coming your way.

Mlp- I'm buying your book

octogirl

Just chiming in to say I will buy the book also, and yes Molly I know you will feel better if the decisions are well thought out. A 50/50 split on a recommendation would be disconcerting to me...all the waiting and docs apts though do get old, I know.

I have a tiny little spot on my breast where the skin broke as a result of just getting too irritated by the adhesive in the bandages covering my one suture that has been slow to heal. BS looked at it this week and said suture really is finally starting to heal but that I am developing a sensitivity to the bandages (so I am just using gaze in my bra now at her rec). Yes, suture spot looks good, now little cut area in skin, not so good. it isn't infected at least yet but it is bothersome. fixed it up per her rec and off to bed. but not before snipping at hubby a million times. Isn't it awful how one tiny little thing can set us off, and how big a baby am I getting so upset about that, but doing just fine in chemo? We humans are funny people.

HUGS, HUGS, HUGS to all

Octogirl

PoppyK

Molly, It sounds like they are going to give you a thorough second opinion, which should be a good thing.... once all of the waiting is over.

My medical team (and many others) use a formula to calculate out comes of different treatments. Basically, how much of a benefit will chemo (or other treatments) offer? Here is a link to the site: http://lifemath.net/cancer/breastcancer/condsurv/index.php

Clicking on the breast cancer tools will give you more options.

april25

Wow. Love the ghost cat stories! Pets, in reality or spirit, just seem to make everything a little better! ... and I wouldn't mind having ghost-pets back around. One would be my sister's cat, and I used to love sleeping with him! So warm and cuddly!

I was "lucky" in that both my parents passed quickly in the hospital. My mom, who had Parkinson's and dementia, was relatively healthy until she caught a cold one day and because of weakness due to Parkinson's, it went right to her lungs and was pneumonia and that just took days... although it was still rough at the end there. But she was very out of it and therefor calm enough.

My dad had a cerebral hemorrhage and pretty much didn't wake up one morning. He was otherwise fairly healthy, so my sister and I had to decide to remove the feeding tube even though there really wasn't any choice. We usually get along well, but we had one of the worst fights ever, right in the hospital. It's a stressful time and such things happen.

Anyway, Peggy, and everyone else, I can relate a lot to what's been happening and what has happened. Many of us are just at the age when friends, partners and parents are elderly or have reached the age where stuff starts to happen, unfortunately.

---

Ok... I still have a hard lump where my tumor bed was... and I had my LX in early May. Is this normal? When does it start going away?

--

Scars... My lx scar is pretty flat. It's just a pink line. (I have a port incision that looks worse, and that was done last December.) My SNB incision is similar, but not flat. It's sunken... and it's a tad more sensitive.

--

Outrunning -- so glad you don't have to have a re-incision!

Molly -- tough that things aren't clear-cut, but getting a 2nd Opinion is good. At least they are really thinking about every aspect and not just going with 'standard of care' options. Take your time and get it all sorted out how you like. Soon you'll be going on with it all and be closer to the finish!

Poodles -- I so hope things are getting better for you!

notdoneliving

Molly, I'm sorry things are up in the air for you, but it's great that your sister is looking into things for you and you're getting the most information possible before proceeding.

notdoneliving

Well, I had my lumpectomy almost 3 weeks ago. The surgeon and nurses were fantastic. The tumor was 1.8cm. I'm healing great. The margins were benign. I've made an appointment with a medical oncologist for October 1 and will make one with a radiation oncologist as my surgeon recommended, but am hoping to avoid radiation since there's nothing there now.

I was so lucky from start to finish (the finish I've reached so far) and should be thrilled and celebrating. But it's been so surreal I'm having a hard time wrapping my brain around the fact that it was cancer. It's only been 5 weeks since I was diagnosed and my incisions are almost healed already. Of course everyone who's known has moved on (except one man who continues to ask me how things are...thanks, Kenny!), which is understandable. I feel like this should be affecting my future attitude/habits/something. But it just doesn't feel real. I'm anxious and stressed for no concrete reason.

I'm sorry this is so pathetic when so many people are truly struggling. I'm really not sure how to deal.

Thanks for listening!

PontiacPeggy

NotDoneLiving, you might re-consider your thinking on radiation. Like you everything was clear on the margins. But cancer is so sneaky that a stray cell or 2 could have escaped and that's what the radiation is for - to KILL CANCER and those stray little cells. There may not be any strays but for me, I want to do everything to make sure my BC stays gone! So I did the rads and have been taking Arimidex for nearly a year. I've had no problems with any of my treatments - so I'm very lucky.

You are very normal! Most people seem to think with the surgery you are done. If you don't need chemo then it was a snap. That doesn't account for the psychological trauma and the very real possibility that, though very small, your cancer might come back. Nothing's guaranteed. Suddenly we're very mortal and vulnerable. Nothing can ever be the same. And you have been on a whirlwind so haven't really had time to sit down and digest the new world you are inhabiting. Now you shouldn't have blood pressure done on your "bad" side, have inoculations there, and the scars showing what had invaded your body. So don't be hard on yourself. You are truly normal. We've all been there. And that's why we're here - to support each other and let our new member know that it is safe to rant, ask the hard questions that you just can't ask your friends or partner, and just get the comfort you need.

We do listen!

HUGS!

KittyL

Notdoneliving, I go thru the same feelings, you're not alone. I didn't even want to accept the wonderful free breast pillow made & donated by Zonta Club of Leelanau County for women having biopsies at Smith Breast Health in Traverse City, felt I didn't deserve it for such a little lump. I did and come bedtime, boy was I glad I did! When I read some of the stories, my heart aches so badly, I think of it as survivor guilt. One thing I'm pulling from my 12-step program experience, which is helping me and may help you, is that just as an alcoholic is an alcoholic regardless of what or when or how much s/he drank, we have breast cancer, regardless of tumor size or lymph node involvement or type. Stunned disbelief, moments I think I'm okay but can't catch my breath. You are not pathetic! You have breast cancer and deserve as much tender care and support as someone facing a bilateral radical mastectomy. Just as I am telling me (haha), you don't have to Earn your right to be here. By the "sh*# happens" factor, we Are here, by luck and grace, we were caught early. I think the basic lumpectomy plus radiation path (plus ???) is the same for all of us. I am so grateful for this forum, and while sorry you have breast cancer, I'm glad you're here; it helps to read a story & feelings so much like mine. (((big hugs)))

Our local extended care facility has pets, and one cat has a knack for knowing when someone is about to cross over, many times before the nurses do. It goes to the person's bed and curls up next to them and purrs to them while they are passing. I totally believe in those things we can't see. For a year, I had terrible sleeping and waking nightmares about the fear of dying (not about being dead, just about Dying) to the point where I had to carry tissues when walking my little dog. From the moment I had the 2nd mammogram/ultrasound scheduled (which started this journey), the dream went away & hasn't come back. I think something in my "control room" knew there was something lethal going on. I was sending myself a message, but didn't know what it meant. Trust me, if I ever start having that dream again, I'm having every doctor check everything possible till we find the cause!! :-)

KittyL

Bra or no bra? Trying to keep costs down, will have combined SNB/Lumpectomy incision 2:00 higher on tail of L breast w/no drain, followed by radiation 3 weeks out or so. I'm a 36B so.... Looking at front opening leisure bras (sleep bras) with no seams, don't want to spend too much money, but thought one for "public" helpful. Should I get cotton? I went braless in the '60s (back when the "girls" were a little perkier) & can do that around the house. Where should I start looking, and do I need one to support the healing incision?

notdoneliving

Thanks, Peggy. I will be talking to the medical oncologist first and discuss radiation with him based on the specifics of my cancer. I've heard a variety of experiences with radiation from being burned and tired (I'm always tired anyway!) to no problems at all. I just really don't like the idea of pumping radiation into my body if it's not totally necessary.

And thanks for your thoughts on me being "normal." Frankly, I want my scars. I think they're going to be very clean because the surgeon was so good. But I want to see them and be reminded. I'm just not sure how to digest.

KittyL, thanks for your thoughts as well! I've heard about cats like that. So amazing. I saw one place in which they would call family members when the cat curled up with one of the residents. Unfortunately, my cat seems to avoid me when I'm at my worse. Really odd because he's always so loving and so involved in our lives. He thinks he's a dog. I do believe in things you can't see. But I've lost touch because my partner is very straight-up...the way he handles his own stuff is to deal with it, then totally move on. My stuff sits in my subconscious for a long time. Makes it harder to deal. He gets that, just doesn't know what to do to help.

I have had a few dreams. Reading your message, I remembered that I had one about talking to someone who said radiation had long term effects on other parts of their body.

I've been trying to get myself back to painting for a long time. I'm getting closer to actually doing it. Maybe that will help.

Thank you both (and all)!!! ((hugs))

PontiacPeggy

KittyL, I think you will want some support for a couple weeks after your Lx. I wore Genie bras and recommend you go up a size if you are in between (check the box for sizing because it is not the usual sizing). You don't want your girls, small or not, bouncing AT ALL! I went braless virtually all the time during my rads. Then I found Walmart's padded bra camis. I'm small - 36A - so I don't really need much support at all (and went braless in the 60s too). Go up AT LEAST one size if not two. They fit snuggly around the middle and are almost like a shaper for me. And they cost $5.79 (under $6 anyway). They are in the juniors' dept. Now that's about all I wear. No underwires during rads and if you have a SLNB you won't want underwires anyway. That site is most annoying - not really hurting but in the way (even sleeves that you thought were loose turn out to be tighter than you realized and can irritate the damned thing).

And welcome to the best lounge ever!

HUGS!

notdoneliving

KittyL, I was sent home from surgery wearing an open closure bra (velcro) packed with bandages (no tape). It was great for the length of time they told me to keep things bandaged, but it had to go after that (big and weird ). Then I wore (and still do) an open closure bra that I had purchased (Warner). They do all seem to be underwire any more, but that didn't seem to bother my incisions. I did NOT use taped bandages. My skin is very sensitive to the tape. What I ended up doing was cutting up a thermal undershirt and using putting pieces over the incisions. They acted as padding and protection. Put arms through the straps, lie on your back to place the cloth and close the bra. Worked great for me. Since my follow-up I've been continuing to do the same, but applying neosporin first.

Hope that helps!

notdoneliving

I totally agree with Peggy. Just bumps in the road hurt for me. I just put my hand on my breast to hold it still. But the lymph node site hurt the most, being under the arm. Not horrible, just annoying.