June 2012 Mastectomy

annievan

Curveball - - Do you have any of those "Coobie" bras?  They're THE most comfortable cami bras, come in all colors and dthey have a little fill thing that slides in the side if you want it - - Just a little padding.   So you could put both little pads in your side that needs it - - might "puff things up" as needed - - - BTW - - I think I might never go back to a regular bra after all this mess - - things little coobie thngs are great.  Sorry if this sounds like an advertisement - -

loriio

Curveball,

My mom laughed so hard when she saw the pads for the camisole they have me in the hospital. She said, "do they have any idea what you looked like before the surgery?". So I can totally relate. The PS went ahead and filled my TEs with 100ccs during my initial surgery so my boobs are already as big as they were before. They are small, but more full if that makes sense. Maybe they are just less affected by gravity.

kirwin524

Happy 4th of July June bugs! Hope all are continuing to mend and getting good news! MMOMTH so very pleased for you!!!!



Hopefully I won't mess this up too bad am on lot of meds but think. We've turned a corner!! Am so pleased! Had another procedure yesterday they basically cleaned infection out. BS said another day or two and I would've been in ICU (yikes!) so trust your instincts girls, no one knows our bodies better'n we do!



I have an irrigation thing and 3 poles worth of tubes coming out of me ... Am envisioning one of The Borg from Star Trek here and DH just rolls his eyes and laughs



There are a lot of places I'd rather be but as this seems to have helped me turn a corner then so be it! Love all of you and thanks for all the prayers and positive thought!

curveball

@annievan, no I don't have a Coobie, but I checked the website and they look mighty comfortable. I tossed my last bra the night before surgery because it was completely worn out, and haven't replaced it yet. What is the "shelf" they talk about in some of the styles? I have heard of a "shelf bra" in swimsuits etc, but I've never really understood what it is. I don't think I could wear a Coobie with my current shape, but after reconstruction, it looks like a definite possibility.

My health plan covers one mastectomy bra & prosthesis, including fitting and I was thinking about getting one to wear between now & reconstruction, but now I wonder if that would be worth the bother. I had skin & areola-sparing surgery so my chest is not completely flat. My breast looks collapsed, like a balloon with the air let out, rather than being totally gone. I've never seen a breast prosthesis up close, but if it is smooth on the back it would probably have to be customized before I could wear it. Maybe I will go check it out, just for my own information.

NanG

MMTOMH!!!!!!!!!!! WOOHOOOO!!!!!!!!!!!!!!!!!!!!!! *happy dancing*

so so so so glad for you! Praise the Lord!!

Loriio - woohoo as well...being a side sleeper myself i totally know how amazing it feels to have actual side time after all these weeks of awkward back sleeping.  its like a sweet respite of the body.  here's to more side time!

Jinkala -  I am SO there with you on being concerned about more than DCIS showing up.  What does that mean to treatment....etc.  *sigh* Its so frustrating waiting for results.  My DCIS was seen on MRI too. barely visible on mammo...but 8cm on MRI.  And long after the fact, my surgeon calls me and says that there may be a small cancer less than 1cm....MAYBE....man. That made me bawl. BUT....she said even if I did have that I wouldn't need chemo.  She said I might have to take some medicine but not chemo.  So...Im clinging to that.  Weird though, I have a friend in our area who had DCIS, and only had a lumpectomy...BUT they gave her chemo and rads.  Im so confused about it all I stopped trying to figure out how they determine.  For something marked 'in situ' and they all say it doesn't have the biological ability to metasticize...what is the benefit of chemo?  i have no idea.  but i also heard of another lady who had dcis, had a lumpectomy but turned out to be her2neu, and so then they gave her chemo and rads. i have no idea what her2 is though.

curveball

@NanG, Her2 is a genetic marker which may or may not be present in breast cancers. This can make a difference to treatment, because there are medications that affect Her2+ tumors but not Her2-.

It seems odd to me that your surgeon isn't more definite about whether you had invasive cancer as well as DCIS. Can you get a second opinion from another pathologist and get a more specific answer?

"Medicine but not chemo" may mean hormonal therapy. Your signature doesn't say whether you are hormone positive or negative. If you are positive for hormone receptors, a medication to block the action of hormones may be what your surgeon is talking about. Your path report would usually have that information in it.

NanG

curve-when i went to see the onc there was some medical emergency that was going down...so she didn't sit with me and go over the mri results properly because she was distracted.  the next day she called me on the phone and said "we THINK there may be a small cancer, less than 1cm in the right breast...IF that is the case than your grade would be changed from 0 to 1 and you would have to take some medicine, not chemotherapy." (this is the part where i started crying, and freaking out a little bit)

she then said..."i don't understand, your prognosis is good..."

so...im thinking that it could be a strange duct collection.  what i think she said was that the dcis was moving out toward the nipple...so im wondering if its like a little convoluted area of actual duct work thats just really messy, like a bad plumbing job in there...or what.  i think i must have had some kind of hard to read breast tissue because my mammo was so off, and the mri results got me an "if" from a panel of oncologists!  so im guessing that they're going with the actual pathology. 

Nobody told me anything about my estrogen status. I wish when i got my diagnosis they gave me all the status on a little card that i could refer to....so that i know what to look up and stuff.

JenH13

NanG- when you were first diagnosed did they give you a copy of the MRI reports and such?  I know on mine it was hard to understand but I did find on there what my PR and ER % was.  Maybe that would help in figuring this out?  All in all it sounds like you have a very good prognosis though.  I would definetly call back though and ask for some better answers.

Good news got my drains out yesterday!  Feels a ton better.  The odd thing I have been having lately is when I drink a cold drink I can "feel" it go all the way down into my chest.  That Cold feeling will last for awhile sometime hours.  Has anyone else had a cold feeling down the center of their chest?

The other good news is that I am leaving on Friday for a weeks vacation in Hilton Head!  My dad rented a house there and my brother and family, and sister and family, plus dad and step mom will all be there for the week.  Our own swimming pool(which of course I cant go in over my waist) and real close to the beach.  Hoping for some renewed R&R

curveball

@NanG, can you meet with your onc sometime there isn't an emergency going on in the next room? In my opinion they really should be able to give you a clearer idea what is going on than you've been given so far, including your hormone receptor status, and an explanation of why you have a good prognosis even if there is a small amount of invasive cancer. Maybe your scan really is hard to read, or the tissue examined by the pathologist is borderline and it really is hard to tell whether it's DCIS or invasive, but if that's the case they should say so, not leave you guessing.

If you have a copy of your path report, or the path report on your original biopsy, the hormone receptor status may be in there. If you don't have a copy, I imagine they will give you one if you ask for it.

Jinkala

My initial diagnosis was the Paget's Disease, which is a very visible nipple cancer.  It seldom shows up alone though so after they couldn't find anything on the mammo or the ultrasound, they sent me to have an MRI which found a 'suspicious' area that turned out to be DCIS when biopsied.  The plan from the start had been to have a lumpectomy and remove the nipple and the area around and under it but when they found the DCIS and started talking about having to go down deeper, I got nervous that they would find more (since they had so much trouble finding the one place with it) and have to keep going back making the hole bigger so I decided to just go with a simple mastectomy.  The other thing that made me decide to just remove it was that with the lumpectomy I would have to have radiation treatments and I could skip that with the mastectomy (assuming clear nodes which was likely).  The mastectomy should mean that I don't have to have chemo either but everything depends on the pathology report.

From what I have read, I understand that the hormone status isn't 'you' but is related to cancer itself and they can't determine it until they actually remove (or biopsy) the cancer.  I think I read that people can have separate cancers in different places that have different hormone status from each other.  This is why they can't just test you ahead of time right at the beginning.  They aren't testing 'you', they have to test the cancer.   I've heard that hormone therapy is quite easy to go through compared to radiation and chemo. 

tightwadmomma

I have a ? for everyone...
My PS told me that he'd like me to be collecting "less than 30" (drains) before he can remove.
Does that mean TOTAL (between the left AND right sides) for each day (I empty twice a day, and add them together)?

My next appt is Monday & I'm so anxious to get these out! (even tho the first 2 felt like I was being stabbed when they were being pulled out!)
I am sleeping horrible & every movement seems to be moving my drains.

In regards to our wonderful hubbies:  Is there a board they can post / read?  I know my hubby had a near meltdown a few days ago when we learned the tumor was hormone positive (he had heard my mom & I discussing tamoxifen & how we were pulling for est neg)... his reaction was 'why can't anything go your (my) way'.  So he was basically having a pity party on my behalf.
I think men retreat when they don't know what to do/feel. My hubs is a big avoider (of people, situations, etc.) & if he doesn't know what to say, he doesn't say anything.
I had to confront him & tell him that I really needed his presence & affection because *I* was the one that has cancer.  He seemed to try harder after that.

We can do this girls!  Think pink!

JenH13

Amy- For me it was per drain.  I had to have at 25cc or less in each drain for that drain to come out.  I agree sleeping with them in is horrible!

Also I believe there is a section on these boards for caregivers, family, friends, and support. its way towards the bottom of the topics.

Hope that helps! 

annievan

Ok - I'm trying to get organized for when I come home from the hospital (going in next week) and am trying to put things where they'll be accessible for my husband to find. . .

A couple nitty gritty questions for you (and apologies if this stuff has already been mentioned earlier in the thread) -

1- What did you wear for 1st week or two (or three)?  To sleep in and during day?  Do you where the cami thing all the time? 

2 - What things need to be accesible in the bathroom for drain cleaning/

Any other tips?  He's being wonderful and expects to be helpful all the way. . . I'm just trying to alleviate him being grouchy and irritated if he can't find what I think I need 

I appreciate you June bug friends!  Thanks for any ideas. . .

annievan

Ok - I'm trying to get organized for when I come home from the hospital (going in next week) and am trying to put things where they'll be accessible for my husband to find. . .

A couple nitty gritty questions for you (and apologies if this stuff has already been mentioned earlier in the thread) -

1- What did you wear for 1st week or two (or three)?  To sleep in and during day?  Do you where the cami thing all the time? 

2 - What things need to be accesible in the bathroom for drain cleaning/

Any other tips?  He's being wonderful and expects to be helpful all the way. . . I'm just trying to alleviate him being grouchy and irritated if he can't find what I think I need 

I appreciate you June bug friends!  Thanks for any ideas. . .

annievan

oops, do you "wear" the cami. . . 

loriio

Annievan,

I wear the cami, but I can only handle it so long and it gets uncomfortable. I also wear zip front bras and sometimes I go commando. It just depends on how I'm feeling. When I'm up walking around for extended periods of time, the Camis and bras help because the TEs need extra support.

In my bathroom, I have a towel with the measuring cups and alchohol wipes for drain cleaning. We keep the measurement chart on the fridge so it doesn't get misplaced.

Make sure to ask the pharmacy to give you non child proof lids. It really does help-especially right at the beginning.

I cleaned out a drawer in my dresser and that's where I keep my silky pjs, Camis, and zip front bras. The only mistake is that I used a bottom drawer. Top would be better. The TEs cause a little pain on my incision when I have to bend over too far. I'll post more or PM you as you get closer. Thinking of you!--lori

curveball

@annievan, you don't need much in the bathroom to deal with drains. I had the measuring cup, a little notebook & pen to record the amounts, tissues (to wipe up any splashes or drips) and gloves (they gave me a box at the hospital when I left after my MX. The instruction sheet I got for dealing with drains says to use hand sanitizer, so I guess either would work.) 

After two weeks, when I was getting impatient to get rid of the drain, I made a spreadsheet to calculate cc of drainage per 24 hours, because I did not empty the drain at the same time every day. I thought the amount was holding pretty steady, but it was actually decreasing little by little. The spreadsheet made it clear that eventually the amount would go below 30cc/day and the drain would be removed.

Jinkala

I had a mastectomy with no recon and I've just been wearing a t-shirt and lounge pants around the house.  Even with my remaining breast being a D, I just find it more comfortable to not have anything snug against my incisions because of the swelling and the stupid drain.  I wore the cami when I went to my post-op this morning but shed that pretty much as soon as I got home.

Drain should be coming out next week.  I got a print out of my pathology report but I don't think they've finished all of the tests.  My surgeon didn't go over it with me in detail but she did mention that they found a small area of IDC that was 3.5mm in its largest dimension that seems to have been right below the nipple (Pagets).   Nothing else really stands out from the report.  It seems to say that the cancer was negative for the estrogen and progesterone receptors but that shouldn't really matter since all of the cancer was totally removed and my nodes were free of cancer.

I have an appt now with the oncologist for later this month but I'm hoping that is just a routine formality.  

NanG

Jen n Curve- when i go in tomorrow i am asking for a copy of my reports from my biopsy and my path report.  and anything else they can give me.

annie - i didn't wear the cami at all for the first two weeks!  I tried but it was really uncomfortable against my body because of all the iv fluids i swelled up like a tick.  i was VERY annoyed by my drains because there really is no comfy or handy way to tote them around with you.  lanyards felt heavy on my neck. when i put them in pockets i felt like a lumpy cow. and by the time i did fit my cami, i only had one.  actually by then it was comfortable to use the drain thingy.  you almost need someone to invent a holster like they have for guns that goes over the shoulder or something?  i dunno. or a sleeve holder like they have for ipods!  drains suck.

as far as for cleaning them, i didn' thave anything. i had a pee bottle (u know with the orange lid) to measure drainage on each side...and i had those little small dixie cups for holding things in (clean qtips, bandaids, etc) and a second one for dirty stuff. nobody gave me any gloves or anything....mind u i have a latex allergy so, maybe thats why.  speaking of which if you have a latex allergy be sure that they check the TAPE. i got a rash on my iv arm because the iv sticker they used had latex in the adhesive and i got a rash from it. it wasn't an emergency but it was so uncomfortable. i also had to check and double check with every band aid and tape and tube that they used on me when i exchanged hands from doctor to nurse to psw....because inevitably someone will make a mistake on that.

i went to walmart and found these AWESOME pyjammas for the hospital and home.  I HIGHLY recommend them if u are in the states im not sure if they sell the same stuff but they are basically like hospital gowns but they are soft and pretty and are done up all the way in the front by a zipper.  they don't touch the breast area because they have a pleat area that is higher than your breasts so they just kind of balloon over your body.  there is sleeveless ones and soft ones

curveball

@NanG, good for you! Your hormone status and Her2 status make a big difference in what treatments are appropriate for you. Now you will have more of the facts you need to make good decisions about your future treatment.

loriio

So I cried for the first time since this all began. My PBMX was due to LCIS found on my left side in a biopsy in March. I had a preliminary call from the nurse last week saying that there was a small amount of DCIS found on the right side in the pathology from my BMX but final pathology wasn't in yet. That threw me a bit but I wasn't too freaked out since I had the BMX. First thing I found out today is that the nurse misspoke and it was a small amount of LCIS on my right side. No big deal. That's why I had the BMX anyway since LCIS tends to be bilateral. Then she tells me I had a micro invasion of ILC on the left side. I cried. Wasn't expecting that at all. Now I'm better. It's early, it's small and it confirms that I made the right decision. I meet with the MO in 1 week and go over if I'll need any additional treatment. Wow.

rosetx

Loriio, for me it was better to deal with what I knew than what I didn't know, I guess.  I think that's why I elected to have the BMX....I just needed to really know what was there.  I'm glad the surgery is behind you and you can be on to recovery.  Sounds like your decision was an excellent one given the circumstances.  Sending good thoughts your way.

25weeks

Needing advice girls. My BS just called me (17 days post op). She told me she presented my case to a group of breast surgeons, oncs & radiologists. I'm 40 yo, 3 nodes removed during my bmx. 1 node clean, 1 node had isolated tumor cells & 1 had micromets. Before the call, my plan was to start chemo in less than 2 weeks (t/c x6). She said the consensus at the conference was that I need an ALND. I know everyone has felt I'm in a grey area, but I really don't think I want to do it. I also don't want rads though. I had a skin & nipple sparing bmx with immediate recon w TEs. This has thrown me for a serious loop. Did anyone here have to go back for more nodes after the original surgery? I just want to puke right now. Everything was looking so good and on target.



Would anyone refuse the ALND at this point? I have 2 young kiddos at home too (almost 6 & 3).



Thanks,

Tricia

NanG

loriio, 25weeks....i just want to give you guys huge hugs...!! imo, i couldn't make a decision like that either.  to go with alnd or not.  i have no advice for you on to go with it or not....but i'll be praying that it seems clear and open for you. 

loriio, keep us posted as to what they recommend.  praying for you too.

tonight...i am a ball of nerves. pathology is tomorrow morning. feels like i am at another countdown.  for some reason i just feel like its going to be good news.  lol. but that in itself is making me nervous!!

first thing im doing after i get home and tell my folks is updating u girls.

i seriously love u girls...u are all in my heart for sure and in my prayers tonight and boy will i be praying tonight!!  AND watching as many funny shows and cartoons as i can to try to NOT think about pathology reports for a while!!!

curveball

@25weeks, we have almost the same diagnosis and my doctors have not recommended either axillary radiation or ALND to me. Other than our age and that you have DCIS as well as IDC, we're nearly twins. Did your BS give you any of the reasons behind the ALND recommendation...maybe a medium-to-high Oncotype score or other test results suggesting cancer might have spread into more nodes? Did you ask her whether there were any alternatives to ALND which would provide the same benefit?

I honestly can't say what I would do if my doctors were making the same recommendation to me, but I think the first two questions I would ask in your situation are "Why are you recommending this?" (knowing the reason might convince me I really do need the suggested treatment, even though that wasn't the outcome I was hoping for) and "Can I get the same benefit from a different treatment?"

The fact that you have TEs in place may be influencing this recommendation due to the problems that often result from combining rads & tissue expanders.

beata44

Hi everyone.  I just wanted to update since my final pathology report came in.  Along with a large amount of DCIS, I had 2 IDC tumors, 1 cm and 1.5 cm.  The SNB came back clear.  The final pathology showed isolated tumor cells in 1 node, but I understand that is still considered negative.  I chose a BMX for peace of mind, but my BS agreed that a UMX (rather than a lumpectomy which was thrown around) was the best idea.  We chose correctly.  Nothing was in my other breast, but at least I have peace of mind (and matching boobs).  As a weird side node, my radiology showed 2 large SLN.  It turned out 6 lymph nodes made up the one, and 4 made up the other.  SO I actually had 10 lymph nodes removed.  Weird.

My tissue was sent for oncotyping today, so now I need to wait for that result.

The news is good, but I hit another bump in the road.  I ended up in the ER yesterday with a fever.  My WBC is high, signaling infection.  My PS came by and checked me out.  It doesn't seem to be a surgery related infection, so that's good at least.  It's most likely a UTI from all my stomach issues this past weekend.  I had IV antibiotics and was sent home with pills.  I still have a slight fever, but I am feeling better.  I was pretty depressed yesterday, but I am trying to be positive now.  

sandpiper1

25 weeks......Personally, I would make an appointment with your BS to discuss the pros and cons of each decision-in person (for and against ALND). I believe this is part of post-operative care and you shouldn't question your need to make an informed decision. Hoping you are at peace with whatever you do decide.

All of my heartfelt wishes for continued recovery and smooth treatments for those who continue post-surgery.

I have been MIA, but keep up with reading everyone's progress and helpful hints as I head into my own surgery next week.

25weeks

Curveball-

Are you getting rads? I wanted to avoid rads at all costs. Until today, I thought chemo, then tamoxifen would be my treatment. I think I will schedule a sit-down with my BS and my MO. I was told there's only a 10% chance of more node involvement, but a 30% chance of lymphedema.



I wasn't going to get oncotyping done since I'd already decided on chemo, but maybe that will aid in this decision. I also have some outstanding ultrasounds to have of pelvis & liver due to some irregularities on my CT scans. All things I think I need to get done before making this decision. Sounds like my July 19th chemo start may get delayed.

My guess is that my BS had been on the fence & when the opportunity arose for her to present my case to a group of specialists, she took it. She said she'd take all level 1& 2 nodes, leaving level 3. I'll have to research all that to see exactly what it means.



All I know is that this sucks! F&@k cancer!!

rosetx

Hugs to all facing treatment decisions.  Hoping you'll find peace and clarity in the process.

wendy49

@25weeks:  The same thing happened to me.  I signed a consent form that if during my UBX a SN came back positive, my BS would then do a ALND.  At my center, they do the frozen sections while you are under and either give a thumbs up or down.  I was all cleared for negative nodes and therefore did not need the ALND.  When I woke up, that is the first thing I inquired about was my node status.  Two days later, my BS called and said the final path showed 1 micromet (0.05 mm and 0.07 mm) in one node, the other 6 were negative.  I guess I had many SNs that lit up.  I was told I would need to have the ALND.  Obviously, after two days at home resting after the UBX and SNB, I was pretty relaxed and taking things in stride.  That call put me over the edge -- seriously.  I have not been the same since.  Very anxious, upset, etc.  When I had my drain out on Monday, I discussed this micro node with her at length.  My center has a tumor review board.  It is comprised of many MO, RO, BS, etc.  They discuss the path and make a decision, not based on one doctor's recommendation, but many specialists.  I was told by my BS, there is a chance I could have more positive nodes or micro nodes in Level 1 and 2, or they could be all negative.  If there is positive nodes, they could cause a local recurrence down the road and spread.  She explained to me that my arm, the top underside will be numb due to a nerve that is cut during this procedure, similar to the numbness in a MX.  Yes, there is a chance of LE.  We are all individuals and not numbers.  I thought about what I wanted to do, weighed my options and came to the decision I do not want to have a recurrence and go through this again.  When I found out the news of one micro, I researched for three days straight.  There is a lot of research of doing/not doing the ALND.  It depends on where you are being treated (the standard of care) and what your BS recommends.  If you are interested in the research, let me know.  

My decision did not come easy.  A lot of crying, throwing things, isolation, depression, etc.   I decided that I had to know if I in fact have more micro or postive nodes.  My team needs to know because then they would know what treatment to give me.  Did I want to take a chance of a recurrence because there was still cancer in my nodes.  If I end up having a total of 4 positive nodes, then they also recommend radiation.  In my mind, I have to do the ALND for the reasons stated.  I am scheduled for surgery two weeks from today.  I feel like a throw back -- I'm back to waiting for surgery once again.

I know this is extremely upsetting, believe me.  I haven't been right since hearing the news and therefore have stayed away from the boards because I was so lost and depressed that I couldn't even think about giving positive support during this time because I'm so scared and *$%^*@# pissed off.  Yes, I will have a delay in getting chemo.  But, I'd rather have all the pieces of the puzzle then leave my team guessing and me second guessing myself and wondering "what if." That's me though.  I have a need to know, but the decision was not easy and I made sure I read everything so I could make an informed decision.  

After this surgery in two weeks, I also need my gallbladder removed.  I really should change my name from "lovemysamoyeds" to the "surgeryqueen."  Prior to being dx with BC, I had an U/S that found gallstones and two weeks prior to that, I had emergency surgery to remove my appendix.  I was smacked with three things from May 5th to May 25th.  My mind is blown away.

I have also been so discouraged to see some of these other paths coming in.  

Wishing you peace with whatever decision you make.  You will know what is right for you.

Wishing all peace --