How long did you take after dx to make decision about procedure?

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Kitchenwitch
Kitchenwitch Member Posts: 374

I saw two surgeons, liked them both pretty well (though the second one not as much). Then (fortunately or unfortunately) I began hearing more about oncoplasty. My breasts are pretty big - so they can take a big margin around the DCIS site (near the chest wall, tho). But I'd like a surgeon who's going to make the other one match (or work w/ a plastic surgeon to make the other one match) at the same time. They do this at Columbia Presby in NYC where I live. So I have an appt for Jan 4.

I feel sad and anxious about having to wait even longer... get thru holidays and try to have some holiday cheer (ugh) ... I guess I'm looking to hear that it's fine to wait a couple of months and that I won't be losing valuable time. The doctors up there are usu extremely good and pretty nice. Support staff often is terrible - icy and impatient, as if they're overworked cashiers at a Burger King. So I'm not looking forward to that part.

Comments

  • NancyD
    NancyD Member Posts: 3,562
    edited December 2009

    I couldn't get to the next stage past diagnosis soon enough. I thought they would recommend surgery, but instead, the onc and surgeon said neoadjuvant chemo. Then, they had to get the insurance onboard with the meds...seemed like forever, but it was really only about three-four weeks (and that was with one insurance driven delay) before I started chemo.

    January 4th doesn't sound too bad.  

  • sweatyspice
    sweatyspice Member Posts: 922
    edited December 2009

    They also do that at Cornell, among other places (or so I think).  Isn't that what Mia Talmor does?  What did Tsousimis (sp) say about it?

    Who are you seeing at Columbia?

  • Kitchenwitch
    Kitchenwitch Member Posts: 374
    edited December 2009

    I thought Tousimis at Cornell was very dismissive about cosmetic results. "Oh, I'll just move some of the fat around," she said. Someone on the board here (another thread) said she was told that very same thing and she has a dent in her breast she's not very happy with. Tousimis never mentioned anything about my breast size or getting the two to match or whatever.Oncoplasty was never mentioned as an option or reduction, either. 

    I don't know if Mia Talmor is in a diff. practice at Cornell or what but her name didn't come up (just Swistel/ Tousimis/Racha Simmons). Could check. Not thrilled about going all the way up to Columbia (as stupid as that sounds).

    I'm seeing Kathie Joseph at Columbia, because El-Tamer doesn't take my ins. and Sheldon Feldman didn't have an appt until "Feb, maybe March." That's just too long to sit around in anxiety for me. Know anything about her? Or Feldman?

  • LRAllenM12
    LRAllenM12 Member Posts: 123
    edited December 2009

    The surgeon that did my surgical biopsy delivered the news to me on September 16th, one week after my procedure.  I had a double MX by the same surgeon on October 6th, and I was closed up by a plastic surgeon who placed tissue expanders. 

    I knew immediately that I wanted both my breasts OFF.  Both of them.  I did have to do some working with the onc and the PCP to get letters to the insurance to have the "non cancerous" breast removed, but there was no way I was keeping them.  The surgeon told me there was no way the insurance would approve it.   They did.  This same surgeon did my double MX -- and he did it poorly.  I now know why he was so off-putting about trying to get the bilateral approved over the unilateral:  his front office staff told me "We've never had a double MX since I've been here."  (This was after the SX).  The surgeon cut me all the way across my chest -- through my cleavage.  I knew the second the wrap came off that there had been a mistake.  The plastic surgeon knew it was a mistake, but of course, because the other surgeon is in "business" with him, he's not going to be straight up about it.  He sort of dodges my questions.

    What I'm saying here, is research your surgeon.  I didn't.  I now have a scar that I cannot have fixed.  Even the plastic surgeon says there is nothing he can do.  I've looked at a 1000 bilateral MX pics, and not a single one I've found has an incision all the way across.  I'm mad about it, but what can I do but work on getting well?

    I was told I didn't have much time to decide.  I think I had a little more time than I thought I did.

    Go quick, but don't rush.

  • homeagain
    homeagain Member Posts: 78
    edited December 2009

    I understand about you wanting to get IT out asap. I felt the same way.  But it ultimately took four months from 'find lump', to biopsy then surgery.  Then another two or so months with the 'balloon' to prep for an implant.  For me, the implant was essential as I've neuro balance issues and that few ounces +/- made a LOT of difference in how I was able to walk stabely!

    In all it took me about 2-1/2 months to decide which what to do.  I had a whole slew of tests, and felt totally trained after them? Lots of bloodwork and lots of other tests to boot...Then LOTS of reading, from sites like here and other places to decide? GET IT OUT ASAP!  Please?  The worst parts are the waiting for test results during any part of the diagnosis phase!  Do NOT panic yet? You mite not have anything [really] to worry about.  Just wait for the results and READ like crazy! Folks here are super in helping you try and understand what results might mean, or not mean. 

    More important? It helps to like your doctors involved in all this...from the receptionists to assistants, because they are your key to getting questions all thru the process answered!

    Do NOT worry now? Of course you are still 'vibrating'? But save that anxiety and ENERGY for when you will reallly need it! Work to keep a clear mind-not cluttered with 'what-ifs' for now and focus of sources of support, family, friends and others- save that for the RESULTS! I 'saved' my energy and after surgery? That savings paid off big-time! Plus all the reading around here and other resources. 

    Noted that saying 'don't worry now'? Sounds contradictory? Think of it more as a calculated conservation of energy...for when you mite really need it! Surgeries do take a lot out of you and save it for THAT when it happens.  When alone? DO allow yourself to scream at the top of your lungs and cry a bit tho.  Your life changes, yes. But how you adapt, ultimately to them is up to you.  Hope and success! Think it's gonna be good!  You should too!

  • sweatyspice
    sweatyspice Member Posts: 922
    edited December 2009

    Mia Talmor is in the plastic surgery practice, not the breast surgery practice - that's probably why you didn't see her name. 

    I suppose technically, Feldman is still my surgeon "of record" if you will - I love him.  I don't know anything about the other people in the practice.  I'm surprised that he's THAT booked, usually Sylvia (his overworked sec'y) can manage to squeeze you in before that.  He only sees new patients on Weds.  I wonder if he's going out of town or something.

  • Claire_in_Seattle
    Claire_in_Seattle Member Posts: 4,570
    edited December 2009

    Dear Kitchenwitch,

    I had a lumpectomy + lymph node dissection on my left breast in late September.  I didn't make a "decision about procedure".  Rathen, I asked if a lumpectomy was possible, and my surgeon said "yes".  No difference in LT prognosis, so went with that.

    I am still healing and swollen on the left side, but wear normal bras.  (Size b-c.)  Not at all noticeable unless you are looking for it.  I have been doing weights to tone my upper body.  Really think that makes a bigger difference than plastic surgery would.  Expect to x-country ski in a couple of weeks, so that will finish the toning.  (I am doing chemo right now, so not my usual level of exertion, but am able to cycle and do weights/crunches plus tons of walking.)

    I would wait until the final result to decide on whether anything cosmetic was required.  If you get a hematoma as you heal, that is a good thing, as your incision will fill with fat where the hematoma was.  I can see this happening with my breast, and the result is just fine cosmetically.  Will end up with a half cup smaller (I think), but not enough to make me do anything different underwear shopping.

    I was thinking of buying semi-padded and removing the padding on the larger right breast, but at this point, I think no need.

    Hope this helps.  I understand why everyone at Group Health raves about my surgeon.  She is just the best, and I am thrilled at the cosmetic result.   So is main squeeze.  Hopefully, with the tumor so far back, they will be able to spare your nipple.  Mine works just fine now in every way you can imagine.  So another plus.

    It will most likely not matter if you do January as opposed to December.  What helped me was keeping my fitness level as high as possible, both with the surgery itself and also now with chemo.  It will also clear your brain and prepare you for the journey ahead.  Good luck with everything.

  • kittycat
    kittycat Member Posts: 2,144
    edited December 2009

    They found my lump in March, dx me in June and I had my bmx in August.  I am 100% in agreeance with Lisa - RESEARCH YOUR DOCTORS!!! I got a 2nd opinion from a PS that I loved.  He didn't work with my BS, who I was not fond of.  I asked him to give me 3 names of breast surgeons to research.  I went with his top pick and was EXTREMELY PLEASED!!!  I was glad I got rid of my first BS.  She was a real b*otch!!!  You have some time with DCIS, but the process gets so much better once you have surgery and get the cancer OUT!!!

    By the way, Lisa - I am so sorry to hear about your scar.  That sucks.  Have you contacted an attorney?  Sounds like malpractice! 

  • cookiegal
    cookiegal Member Posts: 3,296
    edited December 2009

    sweaty did you make a decision? Are you going to cornell? I read the thread it's confusing I think Kitchen is talking about the hospital on 168th not the one on the east side.

    For what it's worth I like Talmor, thought she did a very good job, but she is a little stingy on the pain meds.

  • sweatyspice
    sweatyspice Member Posts: 922
    edited December 2009

    Cookie - what are you doing awake at this hour?

    Kitchen already went to Cornell and is now considering Columbia.

    I don't want to hijack Kitchen's thread with my own 'stuff.'

      

  • mlrbelle
    mlrbelle Member Posts: 108
    edited December 2009

    I made my decision very quickly.  Initial suspicious mammo was 9/21/09, surgery was 11/5/09.  I began researching and making decisions immediately after my diagnostic mammo on 9/28 came back Bi-rads 5 a few days later.  I have a family history of BC and knew my lump was pretty large (I could feel it and it was covering at least a portion of 3 quadrants) - I'd felt it for months but docs kept saying it could just be clogged ducts as I had been BF until 4 months prior to mammo.

    I went with bilateral mx based on the fact that I'm young and didn't want to go through this again - we were already sure I had to lose one anyway.  I do not regret my decision since MRI just prior to surgery showed areas in other breast - turned out benign but ADH, so the risk was still there.  Now, I'm just waiting for reconstruction which will hopefully begin in January/February.

    That being said, all my doctors and my second opinions from the cancer center indicated that I did have some time.  Although, they all estimated me at Grade 3, Stage II based on what they knew before surgery, so they didn't want to wait until the end of the year or anything.  Luckily, it turned out I was Stage 0 instead.  The most important thing is to be sure you are comfortable not only with your doctors but also with the administrative issues associated with the practices - this steered me away from the cancer center I was initially impressed with to a smaller surgical office.  They were much better at walking me through, dealing with the insurance and other issues for me (instead of expecting me to handle it) and essentially holding my hand through the entire thing - that was extremely important for me as I was a basket case for awhile and had 2 small children to take care of and hold it together for.  But everyone's different that way. 

    Good luck!

  • LRAllenM12
    LRAllenM12 Member Posts: 123
    edited December 2009

    KittyCat:

    Don't think it hasn't crossed my mind.  34 years old and scarred up for the rest of my life!  I live in Texas, have a pool, and was always in a bathing suit.  Guess that's not going to happen anymore.  the only reason I haven't done anything is because the PS still has to complete my reconstruction in April, and he works closely with the BS, and I know they would call him as a witness and I really don't want to piss off the guy that's making my new nipples.  Just sayin...

    LOL! 

  • Kitchenwitch
    Kitchenwitch Member Posts: 374
    edited December 2009

    LRAllen: I'm sorry to hear about your experience - I wish you the best of luck with whatever you do. Have you gotten a 2nd (or 3rd) opinion from a plastic surgeon? (Just a suggestion - I'm sure you've explored options.)

    Kittycat: Thanks, yep, I'm starting to see that going to two drs isn't going to be enough - just didn't feel 100% on either of them. So the search continues. I do think I have some time.

    Sweaty - hijack away! I've really appreciated your help. By the way - can you tell me why you love Feldman so much? Since I'm a Col. patient (that's where the mam was done) I'm thinking of asking my obgyn (who prob knows him) to see if he can get me in sooner. I think he IS away - but not until Feb. So maybe there can be a little string-pulling. Want to know reason for your opinion if you don't mind sharing,

    Right after I read your post I found Mia Talmor in plastic surg, d'oh! But they didn't even mention plastic as an option... Righto, this was on E. 61st st (Cornell); Kathie Joseph is way up in Wash. Heights at Columbia Presby. Hate the office staffing up there. But the doctors can be great.  

    Claire - I like the exercise/weight suggestions. I'm not as fit as you but I do walk up the 9 flights to our apt. now & then (free weight control program). Will probably start some little handweights again.

    Homeagain - thanks for your encouraging words!  

  • sweatyspice
    sweatyspice Member Posts: 922
    edited December 2009

    Kitchen -

    What insurance do you have again?  I'm thinking we should rent a car and go see:

    http://www.valleyhealth.com/Oncology.aspx?id=2032

    She was trained by Mel Silverstein at Keck (SoCal), he developed the VNPI scale for which DCIS needs radiation and specializes in oncoplasics.  I'd sent him an email about a week ago asking if he could recommend someone in the NYC area, he gave me her name. 

    Oh God, I'm actually considering JERSEY!!!!!  What's become of me?????

  • TOB
    TOB Member Posts: 74
    edited December 2009

    Kitchenwitch,

    I think I am the poster child for delay.  Part of it was my doing and part was due to scheduling issues.

    Please try to relax and enjoy your family and friends over the holidays.  I had a large amount (about 10 cm total) of mid and mostly high grade DCIS in what ultimately turned out to be 3 locations.  I was diagnosed in early June, had 2 lumpectomies 9 days apart in July and was told that they could not get it all so I needed a MX.  I was so angry at my body for doing this to me that I put everything on auto-ignore for several weeks while I tried to come to grips with what they wanted to do to me.  I seriously considered refusing any further treatment. 

    I then decided to research my options and saw 4 different plastic surgeons.  I found an awesome PS with extensive training in microsurgery, but had to wait 2 months for an opening in his schedule for an immediate DIEP.  (I knew that I could not survive a delayed reconstruction emotionally, but that is just my response to all this.)  I also ended up dumping my first very competant but cold female surgeon in favor of another very competant female breast surgeon who was also caring, compasionate and kind.  During the 2 months I waited, I put BC back on auto-ignore, worked in my business, enjoyed my family, sewed and walked my dogs.  I am now a few days shy of 1 month postop and doing well.  I'm glad the worst is behind me, but I am anxious to get totally finished and move on with my life.

    I was about 3 months post lumpectomies when the new surgeon's residents freaked out with another 2 month delay, but she assured me that 2 months was not going to make or break my situation since a good portion of the DCIS had already been removed. I felt the same way and it turns out that we were both right.  It was still DCIS with no microinvasion and no nodal involvement.  I'm free and clear of cancer and just need to finish my reconstruction and be monitored.  Once that happens, I intend to again put BC back on auto-ignore UNLESS AND UNTIL they tell me I have another problem. 

    Waiting is hard, but you can and will get through the waiting, then the surgery and reconstruction.  In the meantime, concentrate on who and what you love.

    Good luck. 

  • Kitchenwitch
    Kitchenwitch Member Posts: 374
    edited December 2009

    Hmmm, Sweaty... food for thought, food for thought. I'm not opposed to leaving NYC - overall, you get such nice support staff etc. I had a terrific colonscopy in Connecticut (long stupid story) and it was SUCH a pleasant experience. (Except for the early malignancy, that is.) I had a myomectomy in Baltimore (used to live there) - again, you just can't believe how nice everything and everyone was.

    Only res about this is, does one really want to have day surgery a car ride away?? I don't have a car. Not saying no... just needs thinking about. I have Aetna.

    TOB, thanks for your encouragement. I think I'm def. going to look around for a month or so till I find a surgeon I love. I don't think two months' delay is at all bad. Yes, waiting is VERY hard. I just wish this were all behind me.  

  • Kitchenwitch
    Kitchenwitch Member Posts: 374
    edited December 2009

    Anne - no one's given me a hard time yet. I had a colonoscopy under general anesthesia - it was maybe going to be a laparscopic thing or even a colon resection - and the approval went through fine (no surgery needed, tho, at least for now). 

    I've been to two BSs so far and no one's mentioned any potential difficulties w/ Aetna. So far Aetna has been ok for us. When my first son was born we had Health Net and he had a loooonnnng hospital stay, mostly covered. The real difficulty was tht the hospital always billed us directly (not sure why) so we got bills for $19k... $35k and so on, and had to submit everything ourselves, ugh.

    I'm thinking of requesting a case manager - someone around here suggested that. Would that help you at all?

    Hope things go well for you too.

    Jill

  • kittycat
    kittycat Member Posts: 2,144
    edited December 2009

    Lisa- I was looking at some of the plastic surgeon's sites and swear I saw a scar across the chest with a PS in California, with more than one patient.  I can't believe someone would think this is appropriate.  :(

  • Kitchenwitch
    Kitchenwitch Member Posts: 374
    edited December 2009

    Anne, I'm just not sure. Someone around here suggested it; maybe it's not necessary. I had one when my son was in the hospital but that was a much more complicated situation, obviously. I guess - go w/o if it seems to be going ok. I'm just at the interviewing-breast-surgeons stage, so nothing too complex. Yet. :)

    Jill 

  • LRAllenM12
    LRAllenM12 Member Posts: 123
    edited December 2009

    Kittycat:  I haven't seen any -- although it wasn't my PS that did the cut, he simply closed up after the TEs, so I'm not sure if there are some moron surgeons out there that think a freaky-ass looking cut through your cleavage is acceptable, or if they are just incompetent.  Mine, of course, is turning into a keloid-looking piece of crap!  NOT HAPPY!  If you have those links, I'd love to see them so I can see how they look months down the line, since I'm only out since Oct 6th.  Thanks!

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