August 2010 Mastectomy

Nbb1032

Tara, OMG - Are you saying that the breast that was supposedly ok now had two tumors? Did you know that the right one was affected?  Had you had a Breast MRI and/or Pet beforehand and were the tumors seen on those tests?   I know you don't know any answers yet.  I am just so appalled at this new developement. Will you now have to have an SNB on the right?

I am so sorry.  I am really so mad for you.  And now you have to wait again til the 19th!   I know this is easy for me to say but try to hang in there and not get too upset until you talk to your oncologist.

 Hugs and prayers,

Nancy

Halah

You can add me to the list for August 30, 2010 BMX no reconstruction. Oh joy!

Anne068

Hi Ladies!

I apologize for the delay! Surgery went well, I am feeling much better.  It's those drains that I hate! I have my followup on the 18th.  Still sore and either feel like a million bucks, or just drop dead tired.

Lots of people in my house. I'm hiding in my bedroom.

I will update more later.

We're doing great ladies! I'm feeling positive for all of us!!!

Nbb1032

Anne - There you are!  So glad you are doing ok.  Just rest and update us later. 

Winterstorm - Welcome to our August thread!  Sorry we have to meet like this.   We are glad to have you in our little support group.

Just found out that the results of my Oncotype DX will arrive about the same time as my appointment to go over my path report - Next Tues.  That means I should have all the info I need to make a decision on chemo.   The next big decision.   I was hoping to put it off for awhile but I guess not.    Friends are coming today to take me out to lunch - that will cheer me up a little. 

hunter15

Advice Please!

So I am scheduled for my right breast unilateral mastectomy with te on 8/21 at sloan kettering. About a week ago I met with my plastic surgeon who suggested that I speak with my surgeon about a prophylactic mastectomy of my left breast. Now I have no history of bc in my family, but, I am very young (well I think so) 33 and have not had genetic testing yet. The surgeon gave me pros and cons of prophylactic mastectomy but said ultimately it was my decision. I feel so overwhelmed and I don't know what to do! My aunt is a radiologist sent me articles and felt that I might consider waiting until my first surgery and complete my reconstruction and feel more healed and at the same time research the prophylactic mastectomy and make my decision at a later time instead of rushing this very dramatic decision. Now I ask, is this crazy to wait?? I am a working mom of two young kids and the thought of having the double right now, double the healing time sort of scares me. I work at a college and my schedule is just about to get busy so I don't want to be down for too long. I have thought (as long as insurance covers it) that I might get this one done now (the one with the cancer) wait and research and if I feel that I want to get the prophylactic mastectomy do that during my winter break. But is it worth just getting it over with? Ahhhhh, I hate this so very much, I just want it over. If there is anyone out there who has experienced this or has any thoughts or advice I would greatly appreciate it!

Lisa 

taranebraska

Lisa - these are very hard decisions, and only you can make the one that's the best for you.  I opted for bilateral, knowing that my left was very healthy, but after reading lots of posts from women who did the array of choices, I knew I would be so irritated only having one real breast, and I wasn't a candidate for any real tissue recon, only implants.

Nancy - re: my path report.  I knew my left would be good.  Last August we did only a lumpectomy on the right for DCIS.  I wasn't a candidate for radiation.  No one told me the path report contained several slides of ADH, atypical ductual hyperplasia which is the pre-stage 0 stuff.  It was June of this year where new spots showed up already, and I knew Iwould have to lose both breasts as I couldn't handle the mammos emotionally on the healthy or the "infected" breast.  I knew we were probably early enough that lymph nodes wouldn't be involved, but I suspected a thorough exam of the right breast would up my stage.  I was so hoping to be chemo free in my life, but it's just not meant to be.  I'm headed to the oncologist next Wednesday.  I hate that I'm in the high risk factors, pre-menopause, no kids, lots of 1997 radiation to my chest ...

My drains were pushing out last night on the left.  Had a great on-call surgeon (who was actually my BS's assist on Tues.) who talked me through everything and told me all will be all right with the drains.  I'm so glad there are some patient-centered doctors out there.  I just can't seem to find a good one to be my primary doctor.  I'm hoping my oncologist will step up Wednesday and help me continue to sort out this round of issues, and any future issues I have as a result of 1997 rads.

Hope all are well - feeling kinda down today but wish I had a great joke for you all.  I suppose, I could humor you with how HOT my anesthiolgist and general surgery assistant was!!  We all need patient-centered docs, with amazing good looks. 

taranebraska

Lisa  - I forgot to mention, I too felt the stress of only having enough time for being down for one more surgery - so I opted for the prophylactic.  I'm not sure recovery is less if you do one breast.  In my mind, I decided to be down once for both and get it all over with. 

ChattaChick

Hi, all!  I had my surgery Thursday 8/12 (decided on BMX, and I'm glad) and am home resting today.  My sister and my DH are taking great care of me, helping me to empty and record my drains, fixing me meals, etc.

My surgery was uneventful, they say, so that's good.  One thing, though--I went to Radiology first to have te radioactive tracer injected, which didn't hurt much at all because the tech only injected 0.2 mL into the side of the breast instead of the 1 mL or more that others inject into the nipple! But they accidentally sent me back to my room with the wrong film.  Fortunately my husband noted the name on it was wrong and asked them to check, and soon they returned with the right film, and I could see a dark single sentinal node. So ladies, double-check everything you can!

Nbb1032

Chatta - Happy to be able to write DONE next to your name!  Glad your husband was on top of the  "wrong film" fiasco.  You are right - everything needs to be checked twice. 

Tara - Sorry for misinterpreting your path results.   You sound like you are being very brave with the new information.   I'm sure it will be my turn next week. 

Hunter15 - Tara gave you some good advice.   You don't say what breast size you are now but for me with 34DD it was an easy decision for me - I couldn't even imagine one foob and one boob.  And I think the recovery time is about the same - you will not have SNB on your left side so your arm movements should be fairly good - and you only have to recover once from the actual operation which is the hardest part - the time saved alone seemed worth it to me.   It is a very personal decision.  I'm sure you will make the correct choice. 

hunter15

I don' t have very large breasts, small B cup. I have some concerns that they will not match at all, but also concerns with giving up possibly "healthy" breast tissue and never having feeling in my breasts again. Also, I am only a candidate for implants because of my small frame so I have concerns with "what if" my body rejects the implants or has issues with the implants???? So many questions! Also, I guess I am concerned with the recovery time after surgery. I have to have SNB on my right side and I will be loosing my right nipple but I get to keep all of my skin, I am happy about that. I guess I just want feedback on women's recovery with the prophylactic and how soon they could operate somewhat normal. Also, if anyone has had experience with genetic testing I would love info on that too, how long does it take, etc. My doctors are not pushing the prophylactic but suggested that it may be a good idea. I have had issues with my left breast, I am on biopsy #3, no cancer so far. Part of me just wants this all over and feels that this might be my out. I have so many years ahead of me and taking into consideration that my DCIS was HER2+ and Hormone positive that gives me more concern with the thought that I would get it in my left breast and would not want to go through this again!

smurfiep

Hi Lisa - sorry in advance for the long post.

I agree that this is a very personal decision and while we can share our experience, you will make th choice that is right for you.

 I wanted to share my story with you girls since I feel so comfortable with your compassionate and caring support. I was diagnosed with Paget's disease (ie nipple cancer) in my left breast. Paget's is fairly rare but 97% of all cases are accompanied by advanced invasive BC. So I spent 4 horrifying weeks getting digital mammos, MRIs, and three MRI guided core biopsies (very painful) to find more cancer.  The good news is that I didnt' have any other cancer in my left breast...but had ALH on the right. The options I had were to have a lumpectomy (removal of my nipple/areola) on the left (a small B cup), followed by radiation, as well as a surgical biopsy of the ALH on the right (a slightly larger B cup) followed by "watchful waiting". Due to the estimated size of the lumpectomy, I was going to be pretty asymetrical and would have to have some reconstruction on both breasts anyway.  After all those MRIs, mammos and biopsies, I knew that I could not endure the stress and anxiety of waiting for test results.  My BS said "You are very fortunate in that you have a  very small amount of breast cancer and your prognosis is good". But to me, it was a very clear decision. I have young children and I wanted to take whatever measures I could to ensure that I will be there for my husband and children (and be a mom/wife in a stable frame of mind!). I had my surgery on Aug 4 with immediate recon/TEs. Yes, there was lots of pain the first few days but today is my first day without any pain killers - now taking tylenol. My best friend took me shopping for two hours yesterday and we had some friends over for pizza last nite. I'm not doing alot of heavy lifting but have started to stretch/work my arms and shoulders  I have one drain left in my right breast and it does hurts. I am waiting for my final pathology report but even so, I am at peace with my decision.  I expect to be "fully recovered" and back to work in another 2-3 weeks.  

I do want to say that I cried and mourned alot before my surgery. While I was not a big breasted woman, the emotional impact of losing your breasts is a considerable, regardless of size. Lots of women on these boards have posted that they had "farewell" or "goodbye" rituals before losing their breasts and I certainly had mine.

Finally, even though I had no family history, I did do the BRAC testing. No kidding that the results came backin a little over a week - although my BS had anticipated 3-4 weeks. Maybe it was a slow week :-).  I hope this info is helpful to you and I will keep you and all of our girls in my prayers.

Smurfie 

smurfiep

Tara - forgot to add that my PS is a hottie...and to boot, he is incrediby kind, patient, and compassionate. There's a silver lining to every cloud 

 ~Smurfie 

Marly

ChattaChick! So glad you're home and sound so cheery!

Halah

I've been reading/catching up on this thread and I must say there is a LOT of courage and hope in all of you brave ladies. Thanks for sharing. And for those of you who are post op, I wish you a speedy recovery.

My surgical onco told me that my BMX (no recon) would be outpatient surgery, is he nuts? It sounds like, from what I am reading here, that y'all were in the hospital for 1-3 nights?

Paula1231

Hello Everyone,

Welcome Poppy.  Well, this is my last weekend with my left boobie, and I am trying to say goodbye.  I have been really busy, and have bought some comfortable front button loungers and have made two vats of hearty soup and bought out the costco.  This is so for the next two weeks, me or my little family will not really have to go anywhere for anything.  I will fill out all prescriptions tomorrow and Monday I go for my dye and radioactive node thingie.

I am first on the surgical schedule on Tuesday, and will get the LBMX with Latissimus Dorsi reconstruction.  My daughter is between class and will be able to stay days with me for the first week home.  I am praying for a speedy recovery so I can get back to work.  I only have nine days of combined sick vacation and major sick leave.  Some of this time in recuperating will be unpaid.  So sisters, say a prayer for me, and I will pray for all of you too.  I know we will all be here for each other.  Thanks for all of your support and for the caring and love that flows thu my keyboard.

I will not fear.  Fear is the mind killer.  I will face my fear.  I will let it pass thru me and over me.  When my fear has passed, only I will remain.

love and hugs and prayers to all. 

Paula1231

Hello Winterstorm,

I am sorry we have to meet this way, but a warm welcome.  Regarding your surgeon, I believe he is a nut.  I do not think in this day and age anyone "treats and streets" you following a MX.  This is not an outpatient procedure according to my surgeon, plastic surgeon or onc team.  You may want to shop around for another surgeon.  This one is from the dark ages.  Take care, and hang in there.  The waiting is the hardest part.

Halah

Thank you for the welcome, Paula. Yes the doc is a nut and the waiting is the hardest part of the game. Which is why I would be more than happy to take your place this coming Tuesday (your surgeon included...you can have mine)! All kidding aside, you'll do great and it will be done with in no time.

Backing up to recovery, how long do you think a hospital stay would it be for a BMX with no recon?

Paula1231

Hi Mindy,

Thanks for the kind words.  I would say at least overnight.  When I was given the choice between the Lat flap and the expander for implants, my surgeon said 2-3 days for the lat flap and 1-2 for the expanders only.  I would think MX no reconstruction would be 1-2 days.  Before the MX laws took place, doctors routinely sent women home the day of surgery.  Insurance companies would not pay.  Now there is legislation that says that insurance companies must pay for the MX hospital stay and reconstruction.  They must also pay to make sure the breasts are symmetrical as well which means they will cover a lift or implant for the unaffected side.  Hope that helps.  Let me know what happens with you and I am hoping you shop around for a more compassionate surgeon.  Take care, and hang tough! 

Mantra

Winterstorm, I just wanted to let you know that my mastectomy with tissue expander was done as an outpatient. Two hours after surgery I was kicked out. They didn't even wheel me to the door. They plopped me in a wheelchair and my daughter even had to even me to the bathroom! Afterwards, she told me as she turned around for a split second to turn on the tap, I collapsed and came with a inch of banging my face on the porcelain sink.

As DH went to get the car, my two daughters wheeled me to the lobby in utter shock that no one stopped them to question why they were wheeling out a patient who was completely out of it.

That said, I was fine and survived. I don't remember the drive home or for that matter, anything, until around midnight when I woke up in my own bed.

When I had my second mastectomy, it was a different hospital and they kept me overnight (they were actually a little shocked that I was sent home two hours following my first mastectomy). Obviously, I prefered the overnight stay.

The reason I was sent home the first time was because of a shortage of beds. My cancer was aggressive and the surgeon said she could get me in a lot sooner and have almost a zero chance of having to cancel, if she could send me home the same day. In Ontario, many surgeries are cancelled at the 11th hour because of a shortage of beds. Not staying overnight meant I would only be cancelled if for some reason my surgeon's OR time was scooped for an emergency. She also assured me that she would not send me home if I was not healthy; in otherwords, if I had additional health problems, I would not be able to have my surgery as an outpatient.

Marly

Hey, Mindy!

All the paperwork that I got from the hospital had headers on it that said "OUTPATIENT SURGERY," but the doctor had told me I would be in overnight. If you aren't doing well, I don't know how they could send you home. Do you know yet what time you're scheduled?

I'd think the malpractice fears alone would make everybody...the surgeon, the hospital, the anesthesiologist...everybody! want you to stay there until you're completely with it enough to understand your post-op instructions. 

And you are absolutely right: waiting is the hard part. Afterward the main feeling is RELIEF, JOY even...that it's over! 

Polyana

Hi smurfiep, glad to hear the good news, and hope that all goes well with you not now, but forever. I was told I have paget's disease in my right breast (I had the mass for 3 yrs) and was misdiagnosed. Although my report did not say I have pagetoid cells, did yours. I did an MRI and the report did not come to the doc yet, but he says it is no difference, since he will do a mast. I was schedualed 13th August and at the holding room fully dressed and ready, I freaked out once I saw the anaesthialogist coming, I was told mine will be under local. I hace very small breast smallet than yours. My breast are the size of a 15 yrs old teenage who is just starting puberty, or maybe less. I am less than a B cup. I buy my bras from the kids side at the malls!!

I was given two options: chemo 1st then surgery, or surgery then chemo. I am lost, and can't stand the feeling of loosing my whole breast, my plastic surgeon said he prefers to wait 4 month after the surgery and then do the construction. My problem is I am not a US resident, and plastic surgery requires follow-up, and I need to go back home and continue my life.. I know this is a personal desicion, but appreciate if you could share some experience that could be of help.

nakopo1

Don;t know all the Initials yet new to this.  Is there a book anywhere on things to do right after a bilateral mastectomy.  Everywhere it just states treatments and not:  my shoulders are tender, when will the fluid absorb when drains are out etc.

taranebraska

Paula - thanks for the words about fear:  "I will not fear.  Fear is the mind killer.  I will face my fear.  I will let it pass thru me and over me.  When my fear has passed, only I will remain."

My fear comes in short spurts.  I think I then slide into denial and numb my fear out for the rest of the day.  Today I am feeling more pain in my right side and wonder about how some women have continued pain for a long time.  I don't want that to be me, but if I can read up a little bit about this current problem, like when my drains were coming out, I will learn and the fear will go away. 

Nakopo  - I wish there was a book for each stage, for each new hurdle put in our way to be cancer free.  I've had to hunt and peck on the key board, spend time in book stores, read till I'm tired of taking more information in, and talk with my docs to bring up all the topics that they won't.  It's exhausting, but we have to be committeed to learning all we can and never stop asking questions.  Keep reading and asking questions of whoever will listen.  I had BMX Aug. 10.  It's only 5 days post-op now, and mentally, emotionally, I'm ready to go.  Physically not so much, but I just took out all my bras out of my lingerie drawer this morning to put in the Goodwill pile.  It felt good!!

Love to all, tara

Halah

Marly - My doctor's office did say it was outpatient but to expect an overnight stay. So I am thinking my insurance considers a MX to be outpatient, IDK. My insurance is TexanPlus Classic HMO. It is a Medicare Advantage plan here in Houston.

Mantra -  wow what a horrible experience you had! Glad to hear you're okay and that it's behind you.

Paula - I'll have to check those MX laws. I'm wondering if it isn't the insurance company that wants me out the same day. But I'll see. Wish me luck!

Lovesnature - It's down to the wire. I'll be thinking of you tomorrow! You'll be okay! xx

lovesnature

Sheesh I wish my mind was functioning properly, I would respond to all you ladies individually.

Tomorrow is the day, BMX w T/E's. I can't say im falling apart, but it's just under the surface...My surgery is later in the day, with sentinal node prep beforehand. Going all morning with just a bit o xanax will be interesting to say the least. I hope the anestegeologist calls tonight, so I can ask about upping my xanax to get me through the morning. Wish I could shut my mind off.

I'm soo grateful for this thread...

lago

Lovesnature: Good luck! When you feel up to it let us know how you're doing

If it makes you feel any better I will be doing the exact procedure as you in a few weeks including the sentinel node biopsy (on one side and level 1 nodes on the other… although I need to check to be sure it's only level 1).

Anne068

Tara...  you got rid of your bras? I'm not ready yet.

smurfiep

Tara - I was thinking of doing the same thing - that is throwing away my old bras (they will certainly bring back bad memories anyway!). I had a PBMX with TE. I want to start excercising (walking and the elliptical are my thing) but I keep wondering if I will set back my recovery with the "bounce" that comes with walking. Has anyone else had feedback from their BS or PS with regard to when we can start exercise - I still have one drain.  I just cannot bear the thought of wearing anything constrictrive on my chest right now.

 Polyana I will send you a PM about the PD.

 Smurfie 

Paula1231

Lovesnature, 

Hang tough.  I understand.  I am sending good karma your way.  There is no way to turn your mind off so let it roam.   Three deep breaths and then your favorite prayer.  I filled my script for xanax and my onc told me to take a xanax and a perc for the dye and the prep for the SNB....So, maybe a oxy and a xanax?  I know that they can be combined.

Tara, I wish I could take credit for the "Litany against fear" but it comes from the Dune series of books.  It is a litany repeated after three cleansing breaths by a sect of "bene gesserit" who could control pain and fear with their minds.  It works for me when my imagination runs rampant.  I too am prone to anxiety attacks at the weirdest times.  Sometimes I can't catch my breath and I sob uncontrollably.  Then its back to the denial feeling.  I still cannot believe on Tuesday I will have the surgery.  I am working on coping skills other than dessert and liquor.  I must say, a Margarita after a really stressful day of pre-op is just what Dr. Paula orders.  LOL.  Hang on tight.  We can get thru this.

poppy12

Lovesnature good luck for today will be thinking of you, Paula1231 good luck for tomorrow will be thinking of you also, soon be my turn Wed,

hugs Celia.x