April 1 is the one year anniversary of my mastectomy

Wow Angela, you are having to make so many decisions.  I did not have any reconstructive surgery,and as I sit her a year later, I am good with my dicision.  But on a daily basis the one thing that makes me feel wierd is that I have one breast.  I make do, of course, but each day I wake up and go to bed with one breast.  Never in my wildest dreams did I ever think that I would have one breast.  Life is so unexpected. 

So make the best decisions you can, and go slow, you do not have to make the decisions really fast.  Take some time, knowing in the end you will make the best decision for you.  You are so vulnerable at a time when you are making the biggest decisions you have ever made.  And I used to get nervous buying a car!!!! 

For me the surgery was the easy part.  Very little pain.  I have never had surgery before and thought it would be horrid.  Very easy.  I don't think I took any pain me after coming home about 24 hours after surgery, but should check with the husband as he remembers more than I do.  I hope you have loves around you to hold your hand.  It is a vulnerable time.  I will be waiting to hear how you are doing.  Love, Deirdre

Angela, you and I are going through the same thing at the same time.  My surgery (b0th breasts, with expanders) was done on April 15.  I am having some pain, I think with the drain tubes.  I will get them taken out on Apr 30.  I am reading about all these women with more info on the numbers and names of meds and it just confuses me more!  I have my biopsy reports, but I really don't know enough to decipher any of it.  I want to get the oncotype dx test because I have been told that it is good to get, but I still really don't know WHY!  I don't have an appt scheduled with an ocologist yet because my surgeon told my husband that she got it all, so he assumes (as do I) that maybe I won't have to have chemo or radiation if I don't have cancer anymore.  Is this crazy?  From what I have been reading,  if you've got it, you still have it and always will.  I want to be cancer free.  NOW!  Let me know how you are doing and what you are doing.  My surgeon is in Riverside, CA and my plastics is in Newport Beach.

Hi - yes i also experienced the same thing from my post op visit - was "your good to go" we got it all - -and see you in 6 months - - but "also wanted to point out to me the following" - -  during the surgery we found an additional tumor on the margin of the orignal tumor.  I am pretty confident we got it out - and it's right on the cuaterized edge to "do you want to see an oncologist to be clear" and doc says "ya know - just to close this case up for sure".  He said that during the peer review of my surgery - it was noted by someone that this being on the "cauterized edge" that the margin may not be clear and the doc said to me "so for sanity for everyone - even though i believe we got it all - i can refer you to MOffitt Cancer Ctr or another Oncologist".  What a blow to the mind - - Hmmmm - - a small .3 cm tubular carcinoma positive on the path report from surgery  - - how is it that this was all taken out?  Wouldn't the path report say it was cleared - or even noted inthe "comments' of the path report.  I'm just not confident in my surgeon at this point - and referring me for radiation or oncotype dx test or pet scan is not really condusive.  If anything they are intrusive because they are radiation entering the body and that's going to kill cancer cells and good cells.  If i needed it sure - but doc was not referring me until he talked to me two days after the post op and i still had concerns.   So i'm not sleeping very well and am very concerned.........   How are you doing?

I am lying awake a lot of nights thinking things that I don't want to think about in daylight.  Other than that, I am doing pretty well.  My drain tubes are leaking and that is a mess and I think I have some swelling in my armpit and both breasts.  My postop appts are for Thurs and Friday this week.  I've got lots of questions to ask!  Thanks for your response.

It sounds to me that your doc is doing the right thing in being honest with you.  He is not sure, this is a "not sure" thing.  If you do not have confidence in your surgeon, it is probably because he is not sure that he got it all....I would recommend going to see the oncologist and talk with him/her.  I would also recommend meeting with doctors until you find the one that is right for you.  I know what sleepless nights feel like, and the fear and concern.  I will hold you on the light and pray for your wellness.  All the best, Deirdre

HI - thanks for responding.  I actually did a call back from the Cancer Ctr oncologist who after hearing the entire story that this is a new tumor found during the surgery - that i still should have the original surgeon go back in and clean out that tissue to be sure.  I never got clear margins on that one - so this needs to be done before we just start radiating and radiating what to be sure????  Right.  So i've been referred back to the original surgeon.  I called him back and left a message - he seems to be avoiding me and not returning the calls unless he has not gotten them - --find thq strange.  I am going to call his office today again and if no response - i will refer myself to another surgeon for biopsy of this tissue and/or whatever testing as long as it is less invasive and less intrusive as the radiation or other tests like that.   This all seems strange to me that they are pretty much running - - like they thought i'd be one of those who just go from here and there and start allowing docs to begin injecting stuff into me that can actually make things worse - and make the cancer start growing faster - - - without actually knowing why.    So i am refusing any of that stuff until i see the new tumor path report and know where and how clear the margins are.  Right now - the tumor was found on the cauterized margin - - so that in itself tells me they did not get it all out but could have - but again - need to be confirmed.  Additional redo surgery is always an option and i'd rather have that than any invasive procedure or dyes injected or radiating into me without cause.  So that's where i am at this moment - sitting by the phone ready to dial the doc.  He will answer after hours calls as they go to his cell -i'm just waiting until 7:30 to make the call....  Thanks for responding and keeping me i your prayers.  Back at ya - --- - annette

What a confusing stressful situation.  I found out about my breast cancer in my home town of Santa Cruz CA.  It was a bit like what you are describing:  I did not have confidence in the doctors that I was seeing.  Through a series of fortunate events, I went to the Breast Care Center at UCSF which is about 90miles from my home.  There I found a fantastic surgeon who guided me through the process, which for me took a long time for me to get my head around mastectomy for DCIS which I though was too much for "cancer with a lower case c" as I called it.  This was a mistake but that is another story.  What I am getting at here, is that my surgeon (Shelley Hwang) accepted the choices I was making, while she continued to guide me towards the most "medically responsible" choices.  She is a hero to me.  If your surgeon and doctors are not taking care of you, then please find some doctor who will take care of you.  That is why we go to doctors to be taken care of.  There are wonderful doctors out there who will take care of you while they pursue their particular specialty.  I am so sorry that this is not easier for you.  My medical care was very easy for me.  At UCSF, I experienced competence from the people who schedule appointments to the surgeons.  The culture of the place, and this is a big place, is to put the patient first and to take care of her.  You deserve to get a return phone call without playing any games of waiting till after hours to get one.  Love, Deirdre

Hi- the second surgery went well so far - i had it on Wed - they made a new incisions by my underarm as that was where they found the 8mm tumor.  He is sure he got it all out - and we were doing this surgery so as he said "to keep the radiation guys hands off you" cause that's what they do - they wanted to radiate what? i don't know - especially if it has been removed.  So this surgery was so that we get a clear margin via a path report.  My doctor wasn't sure i refused the radiation - but chemo was definitely a not in my case.   So i'm even refusing a PET scan as i feel it will do more harm than good in the long run (i mean you're getting 3 years of radiation in one shot) and seeing my low grade, only in the breast and i've had the double mastecomy and reconstruction started - i wanted to make sure he did all he could surgically before i start administering radioactive materials into my body.  Although they say PET is safe - it is radiation either way.  If the path from this one comes back positive for carcinoma - then i'll reconsider.  But i was not about that until i knew the surgeon did all he could.  He was actually glad that the Moffitt Cancer Ctr agreed with having him go back in .  They said my form of cancer isn't even a case they would take without the margin clear or not report - - as it was accidentally found so no margin was even obtained.   I'm feeling pretty good about the choices so far.   The drains are still in and i'm back on antibiotics - - yuk.  I want the drains out - they are now less than 30 but i don't see the plastic surgeon until the 19th.  I want that date moved or have the surgeon take them out......i am waiting for the path report news and follow up with surgeon - probably on Monday.....  Annette

What a lot to go through.  It always takes my breath away when I read someone's journey though this maze.  Sounds like you are doing it thoughtfully and aware.  Praying for your healing,  Deirdre