Dis Breast Cancer Survivors Part III - GAGWTA!

[MerryPoppins]

Still itch at times, 9 years out. Sometimes pressure seems to help.

 

[luvmarypoppins]

Good evening ladies

marci and smiley - sorry you are both having the arm pain. My nerve was cut and the pain was all over my L neck, shoulder and the arm down to the ellbow. I know it will never be the same. I tried therapy too. I think I need more.

Lisa - Sending you a . Sorry that you have to go through the hair loss again. You have such strength that amazes me sista. Oh, did I mention I am SO SO jealous of you wearing shorts right now, while I have 17 inches of snow piled up

Linda - sorry about the pats. I watched the game. I really am not a Jets fan, I am a Cowboys and Giants fan. But I figured I better watch the game so I can have something to talk to the surgeon about as he is a huge Jets fan.

Well dh called during church. I gave ds my cell and told him to run out in the hall and talk. They are fine and tired. Tomm. ds is taking me grocery shopping. He has the day off from work. I made an appt. for my blood test. It will be sat. before ds has work. He is not too thrilled. I need a 0 on the tests. Anything higher might mean the cancer is back.

GTAGWTA.

 

[smiley_face2]

Lummarypoppins....I will pray so hard for you that you get your 0!! can I ask what the test is a measurement of?
Can I also ask everyone about fluid buildup in the area? mine was a partial mastectomy, the mass they took out with surrounding tissue measures about 3inches by 2inches by 2inches and that open area they created is so filled with fluid and so sore! it's not hot, so no infection, but man it hurts! I thought it might start to go away by now. I still have to sleep on my back with pillows under that arm and shoulder etc. how long does that last? and if you get it drained does it just come back?

 

[Pea-n-Me]

Linda - sorry about the pats. I watched the game. I really am not a Jets fan, I am a Cowboys and Giants fan. But I figured I better watch the game so I can have something to talk to the surgeon about as he is a huge Jets fan.

LOL not being a football fan, it didn't bother me at all. DH and DS watched but truthfully, it puts me to sleep. Looking forward to baseball season! Thank goodness for the MLB network (and DS's indoor winter practices!).

 

[Pea-n-Me]

Can I also ask everyone about fluid buildup in the area? mine was a partial mastectomy, the mass they took out with surrounding tissue measures about 3inches by 2inches by 2inches and that open area they created is so filled with fluid and so sore! it's not hot, so no infection, but man it hurts! I thought it might start to go away by now. I still have to sleep on my back with pillows under that arm and shoulder etc. how long does that last? and if you get it drained does it just come back?

Longtime posters here probably remember my "banana under my arm" story. For a couple of weeks post op I had to go have fluid drained every couple of days. I really think that partials probably need drains, also, at least in some cases. Eventually it resolved, as did the neuropathies in my arm and the axillary area - for the most part - but I did deal with some mild lymphedema also which required a brief stint of PT and I still wear a sleeve when I fly. It can take a while, though, for these things to get better. Once the nerves are cut there can always be some discomfort. And positioning during surgery can wreak havok later on, but generally those neuropathies resolve after a few days, weeks or even months, from what I've seen (hospital nurse).

 

[Sha]

Morning ladies

Smiley_face2 my mom on her first mastectomy had what looked like new breast growth from fluid building up. At least that is what we called it. Hers was along the incision and not in the arm area. Not certain where your area is that you are being effected. Eventually the body took care of most of it but at first she went back to the surgeon maybe 5 times total and had fluid drawn off along the incision line. Not sure if that would help your situation or not, but your surgeon can assess if its something as an option.

 

[snappy]

I am amazed that these surgeries are done without drain placement too.

Gosh I had three drains, several of which were in for weeks. given it was not pleasant to deal with longterm as the surgeon would not let me take real showers until the last drain was pulled.

Even so, the surgeon aspiratesd fluid later as well. I think my case might be different as my breast was very large and the surgeon was very, very thorough with tissue removal. I read somewhere that larger breasts=more fluid.

I used pillows to prop up my shoulder and arm up for a long time. The surgeon also told me after I had finished the series of exercises to regain mobility (about a month later) to raise my arm on the affected side straight up in the air as often as I thought of it to let the fluid drain down (let gravity do its work).

Marci, did you see a physical therapist in the hospital and were you given exercises? If not, ask the doctor about the exercises. It is very important to not overdo at first but gradually build up. I was given a book at the hospital with the info with pictures to illustrate. Also, hopefully you have info about scar massage. I was amazed how much more info I had be given about these issues than some of the other ladies in my support group years ago.

I have a subtle feeling of extra tissue under my arm even after 6 and a half years out. I think it is becuase the area is permanently numb. Numbness I can live with but the nerve pain you and Marci are having is more painful. I do think it will resolve for both of you but how long it will last is unknown.

 

[PatsMom]

LuvMaryPoppins - just wanted to say I'll be praying for good test results for you!

 

[Pea-n-Me]

So many funky things can happen. My fluid buildup happened to be in the axillary area, where they took out the nodes. But inside my breast around the surgical area I developed a large, painful hematoma (like a blood blister). They told me at the time that if I wasn't beginning chemo, they'd go in and remove it. But once I started chemo, it wouldn't heal, so we had to just leave it. It continued to be painful so much so that I couldn't sleep on that side (my favorite) and god forbid one of the kids or the dog, etc, bumped into it. It hurt! (Bumps or pressure still hurt. And later, the radiation brought further changes to the tissue inside and out.)

One day after I started chemo, the breast turned completely purple. Nobody could really explain why. I got so tired of trudging to the doctor's for strange breast problems that one day I actually emailed them a picture instead. My oncologist called me afterward to say when she saw it coming in she expected to see a picture of the family. So I guess you could say I've just learned to live with it. Today, seven years after the surgery, I still have pain inside and I still have what is now a seroma, which is what the hematoma turned into. It will be there forever and it makes mammograms a little tricky to read. (I think I mentioned two months ago the radiologist who read my mamm took me into the dressing room afterward to view my scar which was a little strange - had never had that happen before, but glad they were being cautious. I know it was related to the darn seroma.)

None of this, btw, changes the way I feel about the surgery or makes me wish I chose another route. These things just happen with surgeries. The big thing to me is that they got rid of the cancer and it hasn't come back. My surgeon actually did a great job, I think.

 

[Sha]

Part of my post disappeared

guess that is what I get for not paying attention in the morning

 

[smiley_face2]

Thankyou for all the information!! the fluid buildup is right in the breast where the mass was removed. I think that for me, like you Snappy, I have large breasts and the area she removed was quite large, thus more problems with fluid build up. 20 years ago when I had my gall bladder out, they left a drain in for a long time, it was easier to deal with than this! This morning, the skin over the pocket of fluid is turning purplish so I'm thinking it's turning into a hematoma as apposed to just fluid. I had to shower with only my left hand because I just could not go without supporting that breast, way too painful. But I told her just before the surgery, please take as much as you want...the whole thing if you think it looks like it needs it!! So I'm hoping/guessing she was not shy in the margins. I also agree, no matter what problems are happening now, I am so happy to have the actual cancer mass removed! Even if I had lost, or end up losing the whole breast, and for that matter the other one....that's ok with me!!
the sensitivity running down my arm I'm just trying to ignore, but under my arm right where they took the nodes, is actually doing pretty good, still quite tender and a bit of scar tissue forming, but no fluid buildup to speak of. small blessings....
I'm am forever grateful that I found you all on this thread! I have tried going to some of the breast cancer support forums on line, but there is so much bad news, and scarey stuff there, I always end up in tears and so afraid for the next several hours, here I always feel informed and better yet uplifted!!
I've been thinking about luvmarypoppins throughout the day. I am praying very hard her news is good.

 

[snappy]

Smilie, I can really relate to the scary stuff on the internet. I am the ultimate information seeker. I bought books, checked books out of 2 public libraries and the library at my local Cancer Services office. I also read on line, starting with the darn diagnostic mammogram.

I about drove myself silly and had trouble sleeping.

I agree we are less gloom and doom here, partly I think thanks to Ann's husband and his mantra, don't bleed till you shot.

Also, I think in general here we are silver lining folks, not sure why, maybe because we also pixie dust folks?

Regardless, some of the stuff I read on the internet scared the ever living _____ out of me.

Now I mostly google disney stuff, lol.

Losing the entire breast is not the worst thing in the world. Reconstruction can be very helpful. Even my non-affected breast was improved as a result of my reconstruction period.

LMP, you will have to keep us informed after you get Saturday's results back.

Hope you made it to the grocery!

How is your son's job going?

 

[Pea-n-Me]

the sensitivity running down my arm I'm just trying to ignore, but under my arm right where they took the nodes, is actually doing pretty good, still quite tender and a bit of scar tissue forming, but no fluid buildup to speak of. small blessings....

Do you mind if I ask how you are managing your pain?

 

[smiley_face2]

Do you mind if I ask how you are managing your pain?

Mostly just ibuprofen. I have dillaudid, but they make my heart palpitate and do bad things so I only use them when I really have to.

 

[wdw4us2]

smiley - I'm sorry that you are experiencing so many problems related to your surgery. As others have mentioned, I had four drains after my double mastectomies and didn't have any of the fluid build-up or bruising. I hope you feel better soon!

MaryAnn - Praying that you get a 0 on your tests.

Feeling pretty good this week. Been trying to get a lot done before chemo #2 on Friday. I'm going to ask for a B12 shot tomorrow when I go in for my labs at the oncologist. I just don't feel like I ever have enough energy!

 

[Pea-n-Me]

Mostly just ibuprofen. I have dillaudid, but they make my heart palpitate and do bad things so I only use them when I really have to.

Ibuprofen should help. How are you taking it?

 

[luvmarypoppins]

Good morning ladies

Its a gloomy eeyore weather wise kind of day here. Rainy and cold. I hope it doesnt refreeze up tonight. That on top of 17 inches of snow. I need to think spring!!

smiley - sorry about your pain and fluid. I had the drain in my neck for weeks post op. I hope your pain is manageable too.

Laurie - is your dd getting excited about the upcoming trip?

Lisa - I am so with you on the b12 shot. I think I cant get another till around the 23rd. He said once a month and he has not even ordered another blood test to check it out. I am bringing my last lab results to the endo in Feb. for her to review.

I am with you all about reading stuff on the internet. I even have a hard time just finding info about my rare agressive variant. Gheesh. Sometimes I dont even want to go there. So I hang around the thyroid thread here too.

I dont get the blood test till sat., then she usually never calls as she knows I am coming in for a visit. So I guess I will have to assume no news is good news. Once she did call and say everything was fine.

Today is my last day for the antibiotic so we will see if the pain and draining comes back.

Dh and the ds callled and e mailed. They had fun. Ds19 said he now knows what it feels like to be in the minority, the taxi drivers are crazy there, worse than NY and he ate rice, he is my picky eater. They saw lots of sites (ds19 and 20) took a tour, then they went to the Great Wall with dh and his associate. I think this is their last day there. They are suppose to see the acrobats or some kung fu thing?

GTAGWTA.

 

[smiley_face2]

Pea-n-me, not sure what you mean? I take 1 or 2 tablets, as needed maybe twice a day. I try and alternate with "tylenol" because too much of the ibuprofen can upset my stomache. The most dilaudid I took at one time was 2 of my pills..... had to go look to see how many mg they are.... 4mg..... anyway, 2 of them was what made my heart palpitate, and my breathing was all funny...I will never take that much again! it scared me! the dr. said it was better to take 1 of the dilaudid, and an ibuprofen or tylenol with it.
I have an appointment at 4:15 today with my gp....apparently my results are in, and even though I see the surgical oncologist tomorrow, I want to know now if my lymph nodes were negative! I'm so nervous.... Like you guys said....don't bleed till you're shot.... but sometimes it's hard! hubby said, the treatment will likely be the same, it's an aggresive type of cancer so they're "throwing the book at it" and lymph nodes or not that will be the case, but I wonder..... if there are any cancer cells in the lymph nodes, do they then take more of them out? and I wonder if they would do that before they start the chemo? so many unknowns.....which I hate!
So Maryann....(may I call you Maryann?) (I'm trying to figure out just who is who here from forum names and real names in posts!) if I were you I'd be calling!!

 

[Pea-n-Me]

Pea-n-me, not sure what you mean? I take 1 or 2 tablets, as needed maybe twice a day. I try and alternate with "tylenol" because too much of the ibuprofen can upset my stomache. The most dilaudid I took at one time was 2 of my pills..... had to go look to see how many mg they are.... 4mg..... anyway, 2 of them was what made my heart palpitate, and my breathing was all funny...I will never take that much again! it scared me! the dr. said it was better to take 1 of the dilaudid, and an ibuprofen or tylenol with it.

I am a hospital nurse so I need specifics. Ibuprofen is an extremely effective analgesic if it's taken right. Most people, though, don't take it right. I'm not sure what the dosage is of the pills you have, but if it's 200mg, then one or two of those maybe once or twice a day as needed is not enough to effectively manage the type of pain you're describing (neuropathy). Recheck the prescription and try going up to the max prescribed. If it bothers your stomach, make sure you take it with food. (Tylenol can bother your stomach as well.) Dilaudid is very potent. I would try it only if your pain can't be managed when taking your ibuprofen and/or tylenol correctly, and then only do the 2mg, which should be plenty. I'm not a pill pusher, but there are times that pain meds are necessary and this is one of those times. HTH

lmp hope you get good news too.

wdw4, good luck with your next chemo.

GAGWTA

 

[CherylDan]

GAGWTA!!!

Just got back from WDW this morning, drove down to get DD all check-in for her college program. She will be working at MK for the next four or so months. Will be quite a change around here for sure, as it is the first time she has been away from home. Goes to school locally (her choice) and lives at home. I'm looking forward to hearing about all the ins and outs of living and working at Disney.

I get back on the cancer coaster tomorrow, can hardly wait to see what my doc has in store for me.

Thinking of you all, will post more when I get a chance. In the meantime, sending out good thoughts to everybody in treatment, recovery, or playing the waiting game.