Charleston Bound, part 2

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  • Kim_L
    Kim_L Member Posts: 45
    edited February 2013

    Linda, Thank you, thank you!  I sent you a PM.  I'm going to see Dr. Stollier for the BMX & DellaCroce for the GAP reconstruction, a choice made based partly on chance, partly on a fondness for New Orleans, and partly on information I collected in the forums.  I'm very very nervous but also cautiously hopeful about both oncological and surgical outcomes.  Eventually I managed to trust (doctors I never even MET!), or maybe I just got tired of arguing.  Either way, I feel pretty sure that they are two members of a very elite group of experienced surgeons who can help me. 

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2013

    I had my GAP part 1 on Jan 23 and part of my right breast required a skin graft. Saw the doctor yesterday and the graft is doing well enough that he removed the stitches. While I am really happy about that, it really aches today. The un-grafted breast had stitches removed but no pain at all there. Also, maybe a little sternum pain which I didn't notice before now.



    Wondering if anyone else has had a similar feeling.

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  • cascader
    cascader Member Posts: 599
    edited February 2013

    I am not sure about the skin graft, do you mean like a paddle? Do you have the football shaped patch? It is still really early and things are still changing and healing, I remember feeling all sorts of twinges and freaking out about them all . I too had sternum pain , but later learned they remove a small piece of cartilage there to access the vein. I am guessing that is why you are sore and I think it is completely normal. It will go away. Soon you will be looking forward to stage 2

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  • ketch
    ketch Member Posts: 157
    edited February 2013

    Out of the hospital today. I had to stay a few extra nights as I had one really good harvested vein but the other was small and skinny. I had to stay until the small vein perked up. Dr. K said he'd quit if all of them were like mine

    . I've never been one to take much medicine.

    Seems I got a bit nuts while taking the Valium and the Demerol. Except for my shoulder and just being overall tired, pain wasn't too bad. I can't say enough good things about east cooper, the nurses & Dr. K!!





    Being back at wild dunes looking out on the ocean has not hurt any!

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  • MartyJ
    MartyJ Member Posts: 1,859
    edited February 2013

    Ketch - so glad you are doing well and are healing here in Wild Dunes.  I would offer to get together, but my DH has shared a nasty cold with me.  I am doing my best not to share with anyone else.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2013

    Thanks, Cascader.



    I have a tear-drop shaped piece of the flap skin at the bottom of each breast (lucky enough to have skin- and nipple-sparing). But on the right breast when it came time to close, in order to not have too much tension on the incision, next to the teardrop was a grafted piece of skin, which grafted well and looks good.



    The teardrops are used as N extra means of monitoring the health of the flap and they will go away during part 2.



    The graft will remain part of the breast. But to do this, there were stitches that were removed yesterday. And it is that area that is tender (better now than this morning).



    Just wondering if anyone else had experience with removal of stitches in a skin-grafted breast.



    Anyhow, still amazed that 4 weeks out although you can tell I had surgery on my breasts it does not look like I had a mastectomy...



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  • Catie2013
    Catie2013 Member Posts: 1,023
    edited February 2013

    Sewaneegirl - I didn't have the skin graft, but had a goofy looking thing (not a medical term ) with a black scab after surgery for the SGAP on my right (but radiated skin side) breast last April. All sorts of funny pains, wound healing stuff and even my nipples hurting - I don't have nipples btw, on and off for quite a while, on and off. I think my body was adjusting to the new things in new places.



    Now, after being almost 8 weeks from the PAP surgery, my new breast is having little rumblings of aches and pains at the bottom of the flap. Goes away, comes back, sometimes I blame it on a particular bra or not. But I've got confidence that the way the pains come and go it will be like the SGAP and go away at some time.



    Ketch - OH NO Dr. K can't quit!!!! (smile) so glad they all aren't as difficult as yours was but sorry to hear you had to go through that! If only we could pick our veins, huh? Good to hear you are on the other side and hope you continue healing - Wild Dunes and Isle of Palms does wonders! And, I too cannot tolerate valium and Demerol. Who told you you went nuts? I just noticed I didn't do well with it - so I told them and this last time they didn't do it.



    Cascader - do you think you could pin down Dr. K while he is in WA at the conference if you have time and figure out exactly what kind of bra is good for a flap in the interim of waiting for stage 2? When I went for my last check up before coming home he said I could wear a different bra than the hospital gave me - so I've been wearing some that I bought from TLC - but sometimes aches and pains in new flap - would be so great if there was an idea of what is good or not, I don't want to hurt the flap or 'minimize' or squish it in a bra only to make it not good for the next stage!







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  • Catie2013
    Catie2013 Member Posts: 1,023
    edited February 2013

    Marty, so sorry to hear about you and your hubby's cold. Did you bring it home from the cruise? Hope you get it gone by your April date!

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  • MartyJ
    MartyJ Member Posts: 1,859
    edited February 2013

    Catie - yes, I am blaming the cruise for the cold.  Of course, could have come from my bridge class where everyone touches the cards and bidding boxes.  I usually want to wash and purell after that.

    Re the bra - I have tried 3 types - genie bra (Target), a lightweight bali (no support, just coverage - wide straps), but the one I love is the one Downey30 recommended - a Coobie.  They come in lots of colors, one size fits all (really), and only cost $22.  I found a coupon on the net with the code SHAPE which got me 2 for the price of 1.  Try this:  http://shopcoobie.com.  Sorry, I have never been able to link on bco.  I would order 2 more, but I am only 6 weeks from Stage 2.  Then I'll get more.

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  • PinkHeart
    PinkHeart Member Posts: 1,193
    edited February 2013

    Ketch,

    So glad to hear you are doing great now and recovering and relaxing at the IOP beach.  Don't you just love Dr. Kline and his fun quiet sense of humor. :) 

    MartyJ, hope you get well soon!  I played euchre over the weekend at a big event, changing tables, etc, and had a great time -- but kept thinkin' about the germs and ran for the sink the second I got home. 

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  • cascader
    cascader Member Posts: 599
    edited February 2013

    I am off to the c4yw conference and will report when I get back. Yes, Catie I will ask about the bras. I still like the Genie, it is comfortable and the pads help even out the difference in shape or size. And Marty, I too like the Coobie, not as sturdy as the Genie and smaller straps. Ketch, enjoy your time healing at the beach.  Have a good weekend everyone!

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  • Catie2013
    Catie2013 Member Posts: 1,023
    edited February 2013

    I guess the problem comes in to wondering if we are supposed to be squishing and holding the flaps up and flattened or in a bra that shows the approx shape a breast should be. I came from a barely B to now a C, LOVE it! But, having had a lumpectomy 18 years ago I always had room in my Victoria Secret padded bra, you just couldn't tell, so trying to make my B's look like a breast was my outcome. Now, I've got flaps that look like the word coined by Marty as "hamburger buns" - and the bras I bought that would hold the prosthesis I used in the last 5 months were from TLC or a mastectomy type store. They have hooks in the front and the back, and they hold the flaps in a normal bra shape (normal for breasts) - I just don't understand support I guess as I really had nothing to 'support' before! I'm not sure if I'm even saying this right!



    I don't want to do anything to hurt or compress or minimize my flaps and will be going back in April for stage 2 - wanting the C for sure. Might as well get something good out this ordeal, right!?



    New question-

    I just made an appointment with an oncologist. I don't think there is anything I need to do following the double mx with recon, but want to make sure I'm not disregarding protocol. Dr. B said the CA was gone with the dbl mx, but there is still a small % that could come back. I do not believe that it will, or has, however thought the oncologist appt would be in line with my history. Do you all go to oncologists too? My internist had mentioned a while back (before this last bout) that I needed to be seeing an oncologist regularily - but I just didn't do it. When I had my first run with CA I went for about 10 years, then the Dr. moved, I moved and just didn't go.



    Thanks so much!

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  • Catie2013
    Catie2013 Member Posts: 1,023
    edited February 2013

    Pink, I love Dr. Kline's sense of humor - dry and quiet - and I was teasing about thinking he'd quit!!!!



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  • Kim_L
    Kim_L Member Posts: 45
    edited February 2013

    Hi Catie2013 and others... I'm also wondering about whether I need an oncologist or what sort of doctors would be best to support me after I leave NOLA after my BMX/GAP flap.   I imagine it makes more sense to be prepared for a complication that doesn't happen than it does to not be prepared for one that does!  

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  • PinkHeart
    PinkHeart Member Posts: 1,193
    edited February 2013

    Catie and Kim,



    I don't have a med onc either. Didnt want to pay higher copay for a specialist if not necessary. Also spent HOURS waiting on med onc who would run in and out in five minutes. She never gave me a timeline of what comes next other than throwing a script at me saying "we" like our patients to take tamox or arimidex for ten years now.



    Nothing about how to check for local recurrence since no more mammos, need for tumor marker tests, MRI, PET, symptoms -- nothing.



    Depends on what your cancer treatment needs are. Your PCP can write your Rx for tamox or whatever. I chose to quit tamox and AI because of major side effects.



    Going for quality of life. My oncotype score only 11 so was told not to bother with chemo anyway. As far as local recurrence I did BMX, ALND, was almost fried to death by the radiation and complications so it better not come visit my chest wall or skin again but no guarantees of course.



    But that's me. You may want to get opinion and decide from there.



    Dr K seemed concerned when I said I ditched my med onc.

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  • bdavis
    bdavis Member Posts: 6,201
    edited February 2013

    Pinkheart... I am surprised with 2 positive nodes (regardless of oncotype) that you didn't have chemo.. I was always told the oncotype test is for node negative women. My MO didn't give me the oncotype test for that reason, and because I had one node with a micromet, he had me do 6 rounds of chemo. I am now on tamoxifen for added preventative protection. With no chemo or tamoxifen, how are you preventing a systemic recurrance? Or attacking a rogue cancer cell? Perhaps instead of ditching the MO you should find a new one who is more personable and attentive.  Don't mean to lecture, but it makes me worry about you.

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  • ketch
    ketch Member Posts: 157
    edited February 2013

    Dr. K was just joking about quitting especially because a useable vessel was so hard to find,not to mention the 14 hour operation. In fact, he took one from a muscle & said it was the first time he'd ever had to do that.



    One foob with the good vessel sounds great. It takes a few tries to get the other's beat.



    Dr. K got a bit of a kick on me getting just stoned on the pain meds. I've never been much of a medicine person, but I'm managing most of it well now. (The nurses & dr k know all about my dog and various other parts of my life from my high times!!)



    I must say this is the best overall care that I've ever had for anything. Our local hospital .... Which won, some say bought an award, does nothing for you. East Cooper was just outstanding!!





    It's been a pretty day here but windy, so we've enjoyed the beach pretty much from the balcony. Still beats the hospital!!!

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  • Catie2013
    Catie2013 Member Posts: 1,023
    edited February 2013

    Ketch, I had the balcony view most of the 5 weeks I stayed at the beach at Isle of Palms, still beats four walls anyday! I'm glad to be home, nothing like familiar surroundings, but still....the beach!



    I knew Dr. K was kidding, sorry that wasn't clear. I had a similiar problem in that funky veins on the left side, smaller than the right side and a 14 hour surgery, and am so happy they are so good at what they do.



    Pink, the 'in/out' was basically another reason I ditched my oncologist of 10 years, I drove (got lost doing so) finding his offices when he changed them and then it was in/out and nothing major to do. I couldn't do Evista, etc, nor was I estrogen or progestrin positive, so basically go back to him, get bone density and then nothing. I did chemo and rads, and thought 10 years was enough. Now I think that maybe I might have done something else in between? My internist suggested going back to an oncologist and recommended this one - which I found very personable on our one and only visit in March. AND the dang internist does nothing to help me in that matter - tells me that it is above her pay grade. Before bmx she said that she couldn't help me with either drains or any other thing that pertained to the surgery - "why don't you just stay there a month" - I was fuming when I left her office, and little did I know that I would be there, at Hope Lodge for a more than a month!!!! Either way, I don't have much medical help here at all. So I chose to just have another go round with the local, nice oncologist and make sure I don't need anything else.



    Marty, your code SHAPE still worked and i ordered 2 of the wide strapped bras - thinking it might help with my next surgery as well. I just have no clue what to do with the foobs as I really didn't have anything to speak of before -



    Bdavis, you doing okay?



    Ketch, you make me laugh with your 'stoned' with pain meds!!!





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  • PinkHeart
    PinkHeart Member Posts: 1,193
    edited February 2013

    Betsy,

    Thanks for worrying for me.  :)  I remember reading your bio and wondering about the chemo.

    Yes, the no chemo thing bothered me and my PCP was pissed off when he found out later.  Of course I was uninformed at the beginning of my BC journey about just about everything.  I had the oncotype test as suggested, then told I didn't need chemo because score of 11 so low.  (Meanwhile from time of Dx and waiting results of Oncotype, I spent 8 weeks checking out wigs, scarves, etc.).  I just read my medical records from back then, and it said based on oncotype score, PATIENT declined chemo.  Absolutely. No. Way.  I just did what they said. 

    They knew in the middle of my long, long mastectomy (SEVEN.5 hours) that my nodes were positive and would need radiation because path done then.  Yet they still let the PS shove in D cup direct implants (when I asked for C) that turned into a nightmare before leaving the hospital... and later from radiation extruded my thin crunchy skin and had to be removed.  I was told I needed radiation more for the 2 tumors and 2 DCIS, particularly because one tumor was mashed into my chest wall, and the other mangling my nipple.  The final path report read out loud to me the next day in hospital stated I was STAGE IV.  The Resident BS freaked out and said that pathologist had it all wrong because the tumor had "dermal involvement" but not epidermal-growing into the chest wall so they changed me to Stage II.  Radiation would not have been recommended for "just" two positive nodes (usually 4 or more), however, the chest wall involvement was the reason to do it anyway.  And I even had a local rad onc say I didn't need rads since I only had 2 positive -- he didn't bother to read all my med records!  That's when I called my PCP and he said PLEASE, PLEASE do rads. 

    Chemo is hell, but I would rather have gone for it then and gotten it over with.  I probably still would have quit the tamox, SE's made me non functional.  50% of women quit their hormone therapy anyway (per studies released last year, and per oncologist/speaker this year at the annual San Antonio breast cancer conference said that patient lack of compliance is "atrocious."

    Actually, I did try to go to a new med onc in December.  Much worse than the first.  (I actually screwed up on the name of referred doctor and made appointment with wrong one!)  He was old school, no eye contact, said something to the effect of why I needed to go out of state for recon when "we" have good surgeons here, he was clueless when I talked about MV free flaps, he kept thinking TRAM . . . wouldn't let me give him my own patient history,  then I asked questions about my recent labs and my low WBC and low lymphocyte counts that I read in my medical records, and he, this is no joke, said I didn't need to be seeing my labs .....  He said he might do some tumor marker tests later on.  And basically walked out.  I walked out slowly (still had drains in groin from Stage 2 surgery) was last patient of the day and was heading back to waiting room when his receptionist stopped me to schedule my next appointment.  By then tears were rolling and I very politely told her no thank you I would not be coming back as the doctor does not seem to be the right fit for me.  Guess what?  I got a letter in the mail a few days letter with the date and time for next appointment with him in March, without my permission!  I called and cancelled it, and actually tomorrow am going to that office to get a copy of his dictation from that appointment.

    Sorry to ramble, this should be on the "Chemo, Rads, BMX, ALND, Breast Reconstruction, Dr. A$$, etc." thread.  :)

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  • Kim_L
    Kim_L Member Posts: 45
    edited February 2013

    Hey everyone!  When I asked above about doctors to support me... I rather meant in case I had a wound dehiscence or a seroma or an infection.  When you had a post-surgical problem after you got home, who did you go to for help?

    But now I also wonder... do I need an oncologist?  Like specifically a medical oncologist?  I liked the surgical oncologist who did my lumpectomy, but the last time I spoke with her she was really against me traveling to NOLA for the GAP flap.  I'm not sure what's the status of our relationship right now, but I did send her an email a couple days ago reminding her what I'm doing and letting her know my travel and surgical dates. 

    I guess I thought I wouldn't need an oncologist after my surgery next week.

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  • bdavis
    bdavis Member Posts: 6,201
    edited February 2013

    Pink... I understand... But unfortunately many doctors are a$$holes... I do think you need someone to run your show. Especially since you have had a runaround... If it were me, I would have my pathology sent to another pathologist, even at this point. Get proper staging. I would also ask if there is any benefit to chemo at this point (doubt it)... It was no bad at all for me... and perhaps try another brand of Tamoxifen. 

    Kim... I also had no support from local docs when I said I was traveling.. Don't worry about it... When I came home and needed some assistance like draining a seroma, I had it drained at the local radiologist. I had NOLA fax a prescription and I made the appt. No biggie. My PCP helped with some stuff.. I had post surgery lung issues and he sent me for testing... I had a bacterial infection due to my port, and was fearful of them cutting into my new flap.. again, my PCP helped me there. I did ask my local BS if she could be a helper... she agreed, but kind of laughed when I asked.  As for needing a MO, I would think anyone with cancer needs a MO, whether its stage IV or DCIS. You had a lumpectomy already but did you have a SNB? I would consult with a MO after next week's surgery... just for someone to follow you.

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  • Kim_L
    Kim_L Member Posts: 45
    edited February 2013

    Betsy, I did not have an SNB.  I vaguely recall telling Liz(?) that I didn't need that, and hearing some hemming and hawing which served to prepare me for the idea I could be wrong.  I imagined that they would do the SNB Tuesday if I need it, but I did not yet ask that question directly.

    I will get an MO when I get back.  It's good advice and I'm taking it!  I'm so glad to hear that you were able to manage your complications without inordinate to do using combinations of overlapping resources.  I can see from your posts and your signature you've been through a lot, and recently too.  How are you doing?

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  • LindaG47
    LindaG47 Member Posts: 400
    edited February 2013

    Kim,  My general surgeon that did my MX (2003) was my helper dr. here at home. I called ahead to make arrangements and make sure he was willing prior to my surgery.  He also took out my gall bladder in 2008, so I have a history with him.  He removed my drains and helped me with some wound care that I needed after stage 1 and he was wonderful.  He took care of me without a one thought.  He also consulted with Dr. Massey.  I would defiantly talk to the docs about a SNB.  I had one of my breasts removed prophylactically  and guess what?  When it went to pathology they found some cancer.  I had a mammogram 7 month prior.  I had asked them if I should have a SNB for the prophylactic breast ( I had one for the mx in 2003).  They didn't think it was necessary, but after they discovered cancer they took me back in to do a SNB the following day. It is more difficult to find the SN once surgery has happened.  Doesn't hurt to ask.  I also agree with Betsy about the MO.  That is another definite.   Good luck next week I'll be thinking of you.  Shoot any questions our way.  We are all happy to help and put in our 2 cents worth.

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  • bdavis
    bdavis Member Posts: 6,201
    edited February 2013

    Kim... I am doing well.. Thanks. Yes, I have been through a lot, but on the mend. matter of fact, I am going to go check my drain and see if I can pull it.

    About the SNB, once the cancer is out, the doctor can't do the SNB. Usually, to detect if cancer has spread outside the breast, the BS will inject a dye next to the cancer tumor and see which node it travels to. Then they remove that node and test it. This would be the Sentinel node. If the cancer is removed without running the test, there is no way to know which node is the SN. And you don't want them all removed just in case... I understand you had DCIS, but I have heard of women who think they have DCIS and realize later they didn't. I assume your original pathology said 100% DCIS, and as long as your MX shows NO cancer at all, I guess you can assume your nodes are clear. But if they find anything during surgery, they should perform the SNB right there. That would be a request you could make with Dr Stolier. Just for the record, I had clar margins with my lumpectomy (did have IDC/DCIS) but I still had a node involved. So if your lumpectomy was even 5% IDC, you are at risk for nodal involvement. I had 80% IDC and 20% DCIS. I would just talk to Dr Stolier about it.

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  • Del11
    Del11 Member Posts: 944
    edited February 2013

    Even though Dr. M is the only dr who requires (to the extent that she can) having a "helper doctor" at home, there is a chance everyone will need local wound care of some sort.  I'm in Chicago and contacted all my docs and then some to help me when I got home, they all declined.  I probably asked 12 doctors.  It was either "outside the scope of their practice" or they just had a huge chip on their shoulder about me going out of town.

    So... my solution, for 2 stage 1's, was to find a wound care clinic at my local hospital. They can deal with most issues that come up with the incisions (I had two small openings, they healed well).  I also went to an internist when I had tummy troubles from the antibiotics. 

    Don't let the b@$tards grind you down. There are other options.  I would look for those options before surgery, just so you know who to call if your PS says you should see someone local. The wound care clinics can be hard to find, but most hospitals have them and their services are covered by insurance.

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  • Kim_L
    Kim_L Member Posts: 45
    edited February 2013

    Hi Linda, Betsy, jeskachi!  Thank you for your input. I will discuss with Dr. Stollier whether I can have an SNB on AT LEAST one side.  My diagnosis was actually borderline between severe ADH and DCIS with NO IDC or other cancer noted, but I have multifocal disease and I would also not be at all surprised to learn after surgery that they found abnormalities in my PMX breast too given a strong family history of bilateral breast cancer.

    Regarding local support, I live in a close suburb of Boston, so there are lots of medical resources nearby.  With surgery Tuesday and travel in between, I've run out of time to do much more than search for wound care clinics, but I am sure there are doctors here who are both capable and willing to help.  My GP is also firmly on my side.  I have not tried to extract promises from the other doctors I've worked with in the past, but I have informed them about what's going on via emails without giving them an easy opportunity to say yes or no!  My theory is that, while they might very strongly discourage me from adding their name to my list of local supporters if I ask in advance, they will find it much harder to say no to me when I come to them as a patient with an actual medical crisis.  I realize I could easily be wrong about this, but it's a comforting thought at a time when it's too late to do much about it.

    P.S. A Google search did turn up quite a lot of hospital wound care centers within easy driving distance.  I'm reassured by that.

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  • Del11
    Del11 Member Posts: 944
    edited February 2013

    Well, my experience is that when asked at the time I needed them their response was, generally "go see your own surgeon, or go to the ER. I can't help you."

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  • MartyJ
    MartyJ Member Posts: 1,859
    edited February 2013

    Kim, if your GP is firmly on your side then that Dr will help when needed.  I was fortunate that my gyn was a strong and willing supporter.  She pulled the breast drains and brought her PA in so she could see the kind of surgery that is possible.  She would have done anything I asked and if she was unable to, she instantly said she could get her husband (a general surgeon) to step in.

    I, also, had a small wound opening in the abdominal incision.  Dr. M had me apply antibiotic ointment and cover with gauze.  She said that it would heal in time and she was right.  Not all openings will require a wound care specialist and some women do not have any problems.

    You are in a good course.  Dr. Stollier can answer any questions about the need for an SNB or other treatment and give good guidance.  You are so close to your surgery that you really need to focus on that and not worry.  All will come together for you.

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  • Del11
    Del11 Member Posts: 944
    edited February 2013

    Wound care centers are quickly becoming a trusted resource for surgeons, not just surgeons with out of town patients. To be honest, if I had the choice of having a wound issue treated by my GP, a PS I didn't know well or a wound care doc, I'd go to the wound care doc.  They are experts at getting wounds to heal. They treated me very well.

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  • bdavis
    bdavis Member Posts: 6,201
    edited February 2013

    Kim.. I agree with Marty... Don't worry about it... I had all the support I needed locally post surgery, and when it was more than any local doctor could do, Dr D flew me back to him and paid for it. So just concentrate on your upcoming surgery and relax...

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