Lumpectomy Lounge....let's talk!

JerseyRenee01

Musosgirl:

Sorry to hear what you going through but glad they took immediate action! You certainly deserve those brownies! Feel better!

JerseyRenee01

Gemma12:

Yay!!! Glad it is over for you! Rest up! Hoping & praying for positive results!

My surgery is next week!

MaggieCat

Marijean - I've read your posts in other sections of BC.org about genetic and genomic "mistakes". I had my tumor tissue tested through Foundation Medicine. I wanted to determine what were the malfunctions within the tumor.

For the CA meet-up gals.... So wish I was on the left coast for the tour and lunch gathering.. I say this as I listen to my internet streaming of KUSC...

HappyHammer

Gemma- Yay- you are home...being best friends with the ice and meds are both great ideas!! Rest, and more rest, too.

Melclarity-WOW! What a year. So glad you and BF have each other and, YES, have to laugh as much a possible....humor really does help!

Sloan- When do you go to France? How exciting- love Paris! Haha...Bennettsville, SC after that....tall about culture shock! Please keep me posted if you do head this way.

Can't keep up either- this group is so interesting, supportive and fun....good luck to all going into or out of surgery and prayers for good path reports!

marijen

Maggiecat, did you have to arrange testing on your own or did your doctor send it out for you? We're there additional costs or did insurance cover? Did your tissue show mutations

MaggieCat

Marijen - Great questions ... Starting with money - I agreed to self-pay a significantly reduced price if my insurance refused to cover. Insurance covered at that same reduced price. Talked with MO and Foundation Medicine. Handled everything I could. MO/hospital did the final order and sent the sample. Yes, found actionable mutations (which my chemo was appropriate to treat) and other several other mutations as well. If you have other questions feel free to PM me!

Sloan15

Marijen - Don't get too freaked out about Pl3k/akt. They have known about this for a few years. The study was only of 30 women. Essentially, the study said that when the stem cells of 30 women were tested, those with mutations had mets to the nodes. I read about 10% of the people with mutations have mets, but remember, other people have metastasis, too. P13k/akt is associated with cell proliferation, which makes sense for metastasis. The study went on to say that testing stem cells might be a prognostic indicator, or making a P13k/akt inhibitor --like a medicine-- might be a good idea (and is currently in trials).

Sloan15

Also, I don't think P13k is tested in the Oncotest nor the BRCA test, at least I didn't find it on my tests.

Molly50

Maggiecat, very interesting stuff! I wish you could join us as well. KUSC is a gem of a station.

HappyHammer

Musosgirl- wow, what a day! Hope today is going better and that you are resting and letting mom and sis help you out! Take good care!

Musosgirl

Of course I have a bit more discomfort today. But I slept well last night and have pain meds today. I have questions about my drain--the drain is practically empty but the tube is full of blood. 1. We drained a hematoma so I am not surprised the fluid is red, but asking if that is normal anyway... 2. How do I get the fluid down into the drain? I think I can create vacuum pressure to pull it down, but worried that might hurt.

LovesToFly

Musosgirl I've never had a drain so I don't know, but hopefully somebody will be able to help you soon. I hope you heal quickly from this second surgery!

I had my first chemotherapy today, so far it was pretty noneventful. Took the steroids and nausea medication, pushed the chemo, and sent me on my way. Met the pharmacist who went over all the medication, and what to do about for their side effects. Right now I feel a bit weird, kind of wired and weak at the same time, like I had too much coffee on an empty stomach! One thing that was nice was the woman sitting next to me was my age, had done the same protocol as me, and had actually worked on the same schedule I'm planning to work. ( she was done the chemo and radiation, and was doing the Herceptin). She gave me a lot of good information about her experience, and it was quite encouraging to hear about somebody who had been able to work for the most part through the chemo.

PontiacPeggy

LovesToFly, Glad you got through chemo #1 okay. That must make you feel better. It's so hard to imagine some things and I suspect this is one. How wonderful to meet someone who has gone your path before you and can give you tips.

To All, if you had surgery this week - speedy healing.

HUGS!!

marijen

Thanks people on the replies for mutations. I can't see too well, had my eyes dilated for medical eye exam. All is well but will have to read later. Hope I didn't hurt them driving home on a bright sunny day. I wanted the exam prior to radiation. Dr. said if head is not being radiated should not have any eye problems.

Melclarity

Loves to Fly - Great you got through the first, it is a weird feeing I remember, I felt like I was drugged up all hazy, strange, but otherwise was great. Isn't it funny how the lady you met has been through exact same plan as you are going to? Same thing happened to me, although she was herceptin + and I am not, she was so comforting and so wonderful as i progressed through. So did they say by the 3rd day is where you may go down for a bit? Sending positive vibes it keeps going well! I think another reason my body didnt cope with Chemo is, Im super drug sensitive and am so affected, any surgery I have I am vomiting for 24hrs now, its awful. I am starting to feel great now 3 weeks pfc ha! slowly but surely. My Oncologist said too, that the younger you are the less you seem to suffer SE's he looked at my file in confusion though and said...oh but you're 47!! then says, wait for it...my genetics are young so my body has behaved like a woman in her 30's HAHAHAHA! never laughed so hard. Please!

HappyHammer

LovestoFly- yay for getting started with the chemo part and having #1 in the books. Now you know what to expect. So glad you were able to talk with someone who had "gone there before" and knew some tips. I will say that Taxotere did a number on my skin and nails. They told me after the fact that many women paint their nails a dark color and it seems to help?? Not sure why- my nails look like they have "tree rings/ridges"- one for each of the 6 cycles. Fingernails worse than toes. Just remember not to get any mani/pedis while you are doing chemo.

Rest when you can as your body is trying to deal with all of the meds.

LovesToFly

thanks!

Melclarity it was really great that I was with that woman. I know my experience might not be like hers, but it might be like hers, and wouldn't that be great? She did say week one was rough, but then the next two weeks that she worked were fine, and there were very very occasional days that she felt like she had to take off or leave early. That said, she did not have children like I do, so probably life at home was a bit more restful for her. My kids are not super young, they don't require much active care when I'm not up to it, and my husband is super helpful. I tend to be someone that tolerates things pretty well, I'm not particularly sensitive to much (except gluten) and I time to recover from things pretty quickly and easily. Hopefully that will be the case.

I just now read about what your oncologist suggested yesterday. I'm not really sure what to say. To be honest my biggest fear is that some point to somebody's gonna say to me that I really should get a Mx. I know it's not the worst thing in the world, not by a longshot, but I really don't want to. I just can't imagine it, and I also can't imagine having such a big surgery and then have to worry about reconstruction. That said, if you do it when you're not actually in treatment for cancer, you can often do a immediate reconstruction, which is a bigger surgery, but then you're done. This is what my sister-in-law did and although it wasn't easy, she was glad she did it that way. I met with the geneticist yesterday, she said that if I test positive for the gene mutation, and now a days they don't usually recommend prophylactic Mx because the screening with MRIs can catch it so early that there isn't really much benefit and getting the Mx if/before you need to. Exactly what happened to my sister-in-law. She in brca gene mutation positive and was having regular MRIs, so it was caught extremely small, she needed no treatment except for their bilateral and tamoxifen, which is why she was able to do immediate reconstruction. I'm confident you will get some opinions, and come up with the decision that you feel good about (((hugs)))

Happyhammer thank you. I am going to be painting my nails dark, I actually almost always do anyway. I get manicures or pedicures maybe once a year, so no big risk there!

Peachy2

One down, LovesToFly! Glad it went well. What is your work schedule? My treatments were on Thursdays and I worked from home on Fridays so that I could take a nap when I needed one, usually before noon, and go for a Neulasta injection in the afternoon. (Are you getting those?) Usually days 3 and 4 were when I felt the most "off."

Melclarity

Loves to Fly - Well I believe there are no accidents, it was perfect you met her on your first day!! I think you'll do amazing! I have a super high tolerance of things too, but uuugh I think it was being sensiitive to drugs is what happened. So glad you have hubby to help, I think that made it tougher for me, being mainly on my own not having that support, so recovery was tougher each infusion. Yes week 2-3 you should be good!!! Tick it off the list yay!!! one down! Thanks too, I agree if I were to do the Mx I'd do it all in one hit, thats what my mum did many many years ago. Uuugh decisions, and yes Im like you, its not the worst thing in the world, but Id rather not for many reasons and thing is my BS said the same thing, I had nothing to gain from a MX. So they're saying this is purely precautionary in case it came again...uuugh.

LovesToFly

what kind of screening will you be having? I may not have looked carefully enough if you said. I think for me if I qualified for regular MRIs (which at this point I would if I had the gene mutation, Ivealready been tested for a starter years ago and I don't, but I am getting retested just in case), I would be comfortable with regular screening but if I was not getting MRIs, I might feel differently.

LovesToFly

Peachy I am doing the Neulasta. I'm getting it tomorrow at the hospital, and then they will teach me to do it myself. Today I got chemo on Wednesday but I am moving it to Tuesdays. So I will take off until the next week. So I will have five days off this cycle, after that I will have six days off

Molly50

Musogirl, did they show you how to strip the drain? You need some alcohol wipes and you pinch the drain near the incision and use the wipe between two fingers to swipe down several times. This will get any gunk that might be clogging the drain to come out into the bulb. Youtube video how to manage/strip JP drains

marijen

Molly my BS said not to do the pinching wiping thing because it can suck tissue from the wound area into the drain, although I didn't ask him how else I was supposed to do it. I was at the end of draining by that time.

Molly50

Funny, Marijen how different doctors are. My PS said to be more aggressive than I was because I had fine, fibrous tissue clogging mine.

marijen

Molly, when my BS told me not to do it, I said but it's the directions in the hospital paperwork!! He said "Is it still there? I keep telling them to take it out." Seriously I got little direction through the whole thing from them and then when I didn't need it anymore I found all kinds of brochures on a wall I didn't usually go by, no one had bothered to give me those brochures!

marijen

Sloan and Maggiecat, now I wonder if they could even test me for mutations, since my IDC is MIA (occult primary) unless they could have tested my one node? Three hours later and my eyes are still blurred. But they did put two different dilating drops in....

HappyHammer

Melclarity- will be sending positive thoughts and energy your way as you work towards a decision. You will do the best thing for you and once you do...please don't look back! Sounds like you are one tough cookie- then, ate a saltine or two every few hours if I wasn't eating. That and staying hydrated

LtFly- agree with Mel- you will do great and weeks 2-3 were really Ok for me..eating was a bit tough as I didn't have an appetite so made sure to have a protein drink I tolerated well made with Almond milk every morning- took it like meds....and, kept saltines nearby- kind of like when pregnant- never threw up but was "green" some- same after treatments- took the anti-nausea meds and stay hydrated...I drank and still drink LaCroix selter water all of the time...Lemon and also Grapefruit seemed to do well. Just an idea.

ChiSandy

I had the BRCA testing--they don’t take tumor tissue, but a regular blood sample from the arm instead (some do a cheek swab, but the counselor at my hospital said they sometimes don’t get enough of a sample to test). Your blood will reveal if you have the mutations, which would essentially be in all your cells, not just the tumor.

marijen

The stem cell study says this:

"Breast cancer stem/progenitor cells make up only a small portion of the total number of cells within a breast cancer and can be missed in whole tumor testing. They, however, as this study demonstrated, provide crucial prognostic and treatment information and thus should be independently tested along with whole tumor analyses. Through further investigation of breast cancers and their stem/progenitor cells our intention is to provide an improved prognostic tool that will guide more effective breast cancer treatment strategies"

Brightsocks

Well my lump was served notice and was evicted yesterday. I felt so wonderful this morning at 6am.

My day started with the wire being placed in the lump which was a bit uncomfortable because it was sore after the core biopsy. In my mind all I was thinking was get it needle and die lump. Then off for a car ride to the hospital for the radiation shot to track to my nodes. This felt like a bit of stinging nettle for about 4 seconds. Again that was not so bad. Next stop getting ready they had to try 3 times to get my IV in but the third time was the charm. I was on the table for 90 minutes and in recovery they gave me drugs for pain and not to be sick. The pain was under control but the drugs did not stop me from being sick. Again knowing why I was sick was different than a sudden illness. My bed was facing the washroom for the floor so all afternoon long I got to hear the nurses tell each person that they should pull the cord if they need help. So I got to pull the cord. In comes two nurses in a space the size of a airline washroom. They provided me with a Polly Pocket dish to use which I thought was funny. Once that was over I got more drugs they worked when I was in bed but going for another walk no so much. I thought I would be home around 5 but did not get home until 10pm. I did not want to get sick in my friends car so one more stop along the way. I then got my pain medication and was on the way home. While at home I did get sick again and thought how much could come out of me? However it was fine and now that it is gone I move my bus to the next stop. Today I am a bit sore but there is something about having it out that has given me peace.

I will get the results of the lumpectomy in about 2 weeks if they are in when I see the doctor again. Right now I have a big dressing on which will come off on Sunday.