May 2016 Surgeries

Midwest - I had a consultation with a radiation oncologist (who was also the head of oncology radiation at Johns Hopkins) and she did not recommend radiation. I was node-negative and even though my cancer was large, it had clean margins. I did have a spot of cancer under the nipple, but decided to have the NAC removed rather than doing radiation. In the end, I was told that the risks of radiation would be greater than the risk of recurrence. I'm still a bit apprehensive about not getting rads or chemo (can 1 little pill really protect me?) but also releaved.

If you are undecided, I would recommend getting 2nd or 3rd opinions. I considered doing this myself, but I have a long history of lung cancer in my family and finally decided that the RO's advice was what I wanted to hear. If I were to get an opposing opinion, I would probably still go with the advice I received from the first RO.

Hi all

I have missed you all - still have company at my house almost 3 weeks later... Love my mom but goodness. so happy for valstim on your path report and Raven - sheesh! So glad the genie bra was a help - I'm on the hunt now for a good bandeau type since my port is in a bad spot. the 3 pack of genie's from amazon was the best deal! Those of you discussing the underarm pain- yes! I think mine is kind of like a skin sensitivity - it's weird how I am numb in certain places and super sensitive in others. Had the last 2 drains out this past tuesday and that was a huge relief. As much as I looked forward to finally showering it was hard to get the temp right - my skin is very sensitive. I think for me, I'm still very tight from the implants. It was a relief to hear from my PS that I can have a total redo if in 6 months or a year I decide I want something different. They already look a little better than the early days but there is still so much glue than I can't really get a good view. Papillion - yours look awesome!!

Found out I start chemo on 6/15. My youngest son (15) had a totally out of the blue breakdown last week about it. I think he's worried about seeing me "sick." Really broke my heart and my husbands - rough few days for us but I know now how much harder I need to try to continue to soldier on. Anyways... I know for many of you surgery marked the end (sorta) of your treatment so any advice there is appreciated. Blech. Thank you all for your help support, laughter and tears - and advice. I'll be sticking around:) hugs and love to you all!

hi all,

I am 10 days post op and confused about bra size... I have to wear the sports bra for 8 weeks 24/7. I expected to change size due to swelling going down, but not so fAst - first I put on a 36C but it was too tight. Wore a 38B for a few days but cup was tight. Ordered 38C. Too big. A week on I am back in the 36C and it feels too big? Like I need to make the straps shorted to really support the foobs.... Hope they haven't moved up?! That can happen with immediate implants.... Had to lookafter two of my kids this afternoon and ache

natty - ask me any chemo questions you want to - particularly in light of also being triple positive. The main thing I can say is that my anticipation, particularly for the first infusion, was worse than the event itself. I would definitely ice hands and feet, and advise supplements for anti-neuropathy use since you will get a lot of taxane - if you want details, I will be happy to provide them.

Grandma, thank you for your thoughtful reply, as always. Would you mind sending you a pm with some details?

It is very interesting to me that you RO did not recommend that treatment. Then, they are some differences between our pathologies.

I will welcome any input about long term side effects following radiation.

NattyB, glad to hear from you again and sorry about your son. It must be very scary for our boys.

Hi Midwest - I think my boys saw that I did ok with surgery but their only point of reference with chemo is a neighbor who had leukemia (he was 75 and passed away) and people they see on TV so not a lot of personal experience that's favorable. They are boys who depend on their mom more than dad (he travels a lot for work) so they are thinking the center won't hold. As much as you reassure them they'll need to see it for themselves. Oh well, every day is a new opportunity

Thanks for that SpecialK - so glad you said that about the probiotic because I would have taken them during chemo. My Mo visit this past week was more directed towards the clinical trial and how I would "have no side effects" rather than discussing TH so any questions I have had since then (last tues) have been through emailing with the nurse. I'm preparing to wear the wig for a long time - the lady at the wig shop had permanent hair loss from Taxol so that was a good reality check for me. She looked fantastic and has been BC free for over 15 years. I've read varying hair loss time lines for weekly taxol, I just didn't want to be caught with my pants down (so to speak) since I'll be back at work and not everyone knows. My PS said once I was on Herceptin only and at the 6 month point post op that we would reevaluate my reconstruction and make a plan from there. I was relieved to hear that even if I needed a total redo (which I doubt) that it would be covered. I can already tell that I will need FG in the upper poles - I'll be eager to get your advice there too. You really deserve a crown for everything you have been through and for sharing your story - thank you so much!

Well SpecialK - you have been a godsend to many in every thread you have participated in and made the road less intimidating during a very unsettling and scary time and I thank you for that! And yes, if only there was a prcedure that could flip the thigh and butt fat to the boobs I would have been a candidate, abdomen - not so much in my case. Just luck of the draw that the ladies in my gene pool carry it low, lol!

NattyB, regarding chemo. I have been through that three times already. Take every day as it comes. I don't know what chemo you'll get and everyone experiences different side effects. My kids had to deal with this three times too. My approach was: we'll deal with this. Some days I was sick, some days had nausea, or I wasn't allowed to hug them. But I also had good weeks, where I could hug the kids, and even go out for coffee with friends. Be gentle with yourself.

natty - the good news about Taxol is that by itself it is a pretty tolerable chemo agent, with the biggest issue usually being neuropathy. I would ask your onc about using L-Glutamine and B6 during chemo. I used both, combined with Acetyl L-Carnitine (which is no longer recommended due to a trial which used megadoses, I just took a normal one), and I had negligible neuropathy until the half way point, then it stayed, but ultimately resolved by about 90 days PFC. Keep pressing for the addition of Botox to deal with breast cancer stress wrinkles - you might be on to something! Interestingly, some PS use it during TE placement so that you don't feel as much discomfort in the pectoral muscle post-surgically and during fills. It is funny - I have a good friend, former co-worker, and she is a histopathologist dealing with organ transplants. We have theorized that we should start a fat donation business - just like blood donation. There is no reason it couldn't work, and we would make millions, lol! There are some docs banking autologous fat (from the patient themselves) by harvesting all the fat needed for multiple FG procedures in the first go, then freezing the fat for future use.

SpecialK i would be happy to donate a thigh or two to your research:) My PS is sweet and very straight laced so I'm not sure he knew I was as serious as I was, lol. Grandma3x so happy you got to walk your dog, I took mine out on the long leash in a deserted area where there weren't any other dogs so he wouldn't pull me accidentally, it felt good to do something normal:)

I spent the day getting caught up on all of your recent posts. After my lumpectomy and the discovery of IDC I was a bit stunned and not really sure what to do next.

I will for sure have a mastectomy for the left side possibly a bilateral. I'm really struggling on what to do for the reconstruction. I'm having the CT this week and see the plastic surgeon on June 8th to discuss diep flap surgery. I'm not sold on that surgery. But I'm trying to listen to what everyone has to say before I make a decision.

After reading your recent posts and others months surgery threads now I'm wondering about direct to implant and if that's even an option for me? I'll have to ask this plastic surgeons about that.

My husband and I had a great discussion about no reconstruction last night. I'd sure like to get all of this behind me and recovery seems just so much quicker.

As you can see, I'm all over the place!

I just wanted to let you all know how this may surgeries thread has been so very helpful to me to read about your pre and post surgery thoughts and your recovery progress. I feel like the surgeons can tell me what they think it's going to be like, but hearing it from each of you has been the greatest gift I could ask for.

I'll be sticking around as I make my final decision and posting here and on the June 2016 thread also.

Many thanks to each and everyone of you!

tsoebbin - I had asked about direct to implant after speaking with a friend who is also a general surgeon. For me, I already had implants from an augmentation 13 years ago. The created a pocket and already stretched skin when I had my mastectomies - so basically they did a fat and skin sparing mastectomy (taking only the nipples and breast tissue). I did them both for symmetry and the freak out factor of waiting for the other show to drop on the non-cancer side (personal choice for sure). I know of a few others on these boards that were able to have direct to implant because they had larger breasts to begin with. If I hadn't had implants, I would not have been a candidate (I was an A on one side and AAA on the other). I'm fairly pleased with the result so far but it will take 6 months to really see where they settle out. I was OK with being a little smaller than I was with my original implants in order to avoid the TE process and additional surgery there. I basically had 3 surgeries in 1 since I opted out of the lumpectomy - port, mastectomies and reconstruction all at the same time. I have busy kids, a husband that travels and I work full time too so the less time spent at the surgeons office and hospital the better. If you have the skin/tissue to do it, go for it. I was also told this week by my PS that if I wasn't happy with the result at 6 months we could redo the whole shebang since it all falls under reconstruction insurance wise. Incidentally they found more DCIS in my L side and ALH in my right so it ended up being the right thing for me. Happy to help or answer any questions about this procedure. Good luck to you in your decision - no fun, no fun at all, hugs.

Oh my....

My bottom line is this: NONE of these choices are: "Should I go to Disneyland or Six Flags?"

I needed to hear that today!

So much to catch up on! Now that the TE has been removed and the abx are kicking in for my hospital-acquired infection, I felt well enough to go on a little camping trip with DH and my boys this week-end. It was relaxing and heavenly and I was just so thrilled to be doing something "normal"!

Very interesting conversations about nutrition. Honestly, I'm not there yet. I've got a bit of a "f^#@ it" attitude about nutrition and other environmental influences. My sister, who never drank alcohol, has never smoked, and was extremely fit got breast cancer 18 years ago. Me – I drink socially, have never smoked, have been fairly lax about exercise until recently, and I got it as well. I think heredity has more to do with it than environment which seems to have been borne out by the genetic testing results I got back just this week – I was not positive for the BRCA markers, but for another one called RAD51C. It's a relatively new marker that has a 5-9% increased risk for ovarian cancer (compared to general population risk of 2%) and they don't even know what the increase is for breast cancer. But given all of the history in my family, I'd say it's probably pretty good and it makes me feel a little bit better about my decision to go with the BMX. Now I need to decide if I'm going to have my ovaries and Fallopian tubes removed prophylactically (leaning toward yes.)

myToyStory2, hang in there. When I had to go in for a couple of days of IV abx I looked at it like a "forced vacation". When they suddenly came into my room and announced that I was going to be discharged on Sunday afternoon instead of Monday or Tuesday as planned, I was a little disappointed, as crazy as that sounds!

Midwest, I had radiation 8 years ago after my first DCIS diagnosis. Not only did I not have any long-term effects, I barely had any side-effects during the six weeks of radiation itself. The breast got a little red, but it didn't even really hurt – I've had sunburns that hurt more. Now, having said all that, my PS told me that I'm likely to have more problems with reconstruction on the radiated side. I am having problems but I don't believe they're related to the radiation.

NattyB and Momof6, reading about your boys having breakdowns just really broke my heart! The poor little guys want to be man enough to handle it but they're still really little boys at heart and just don't want to see you suffer – poor things. I've never really been "sick" as I didn't ever have to have chemo – hell, I wasn't "sick" until the hospital infected me! But I have to say, I had a little breakdown on the Friday night of the Memorial Day holiday when I found out I had to go in for surgery the next day to remove the TE and that it was ruining our annual camping trip. I NEVER cry in front of my kids (I prefer to do my wailing and gnashing of teeth in private, thank you very much) but I just absolutely broke down in front of both my boys, ages 16 and 13. And BOTH of them rushed right over to me and put their arms around me and comforted me in the best way they could. I'm really quite proud of them and made a point of telling them how much that meant to me.

My PS never does direct-to-implant but that's because he also does over-the-chest wall – he doesn't want to stress the skin too much right off the bat.

Ispy: "My bottom line is this: NONE of these choices are: "Should I go to Disneyland or Six Flags?"" OMG. Brilliant, and I'm totally stealing that.