October 2014 Surgery Sisters

FHG - Great news about your node!!! And for what it's worth, I definitely have a malignant node but will have Oncotyping done unless the pathology is so bad that it's clear that chemo is needed. My MO made that clear from the very beginning. Of course, I'm praying that with the neoadjuvant treatment the node will be cleared prior to surgery and that my markers will fall a LOT.

You'll probably feel more 'cancer free' after radiation and starting tamox. And since it's taken daily, you'll feel as though you're doing something on a daily basis, if that makes sense (or at least I do).

At any rate, good luck with the appts. and congratulations.

ForHisGlory - that is such great news! However, I can understand your confusion. Remember that you need to look at the entire picture. In the NCCN guidelines, if your original tumor is ER/PR+ and HER2-, and is .51 cm or greater, yet your lymph nodes are negative, then they still suggest that chemo is considered if the 21gene RT-PCR is not done or if the score is 18 or above, and definitely if the score is 31 or greater. So, you are correct, that if the tumor is greater than .51 cm and you are node-negative, they do recommend the oncotype to help determine course of action.

For me, since I am only 42 and have had two primary cancers including a 1.8 cm primary breast tumor (2.0 cm before the biopsy), I knew that I would chose chemotherapy, regardless of what my node outcome was, and I didn't even want the oncotype or mammoprint conducted, as it would not change my course of action. I was somewhat relieved, in a very weird way, that my sentinel node was positive with a 1.3 cm tumor, which automatically put me in the chemo course - I guess I just didn't want to have to always be defending my decision? Finally, the whole 'winning the PTEN genetic lotto' sealed the deal and I just see it that God was gracious to actually give me some insight into WHY all of this has been happening to me. Something that very rarely happens.

Bottom line - if your tumor is big enough to consider chemo and you are not feeling comfortable with just radiation alone, then remember that you should be given a choice and you could choose chemo in addition to radiation.

I will be praying for wisdom, peace and more than anything...continued joy to fill your days!

Hugs to you,

Akitagirl

Edukes, my pathology came back as they expected.  I had 6 rounds of taxotere, herceptin, and perjeta first, then double mx.  100% remission.  Surprises suck.  Verified expectations...PRICELESS!  Hang in there, waiting can make you nuts.

The stories and the information, support and caring are overwhelming to me. Thank you all.

I am almost six weeks out from mastectomy, one week after my nipplectomy? Is that a procedure? That's what it was. Getting rid of that dead puppy was good! My smiling Barbie boob is healing nicely. Stitches out next week sometime?

Maybe I can get this drain out today or tomorrow. I have only driven once in six weeks. I am ready for some independence here.

Only 200 ccS in my deflated TE now. Do these things move? When I bend over, it often seems to get stuck near my sternum. Will I have trouble with my fills since this breast was radiated ten years ago? I think I have a strong pain threshold, but do I want Valium? A muscle relaxer? A pain pill? What do I need on hand for that evening after a fill if I have pain? Soreness? Discomfort? Misery? Maybe just a script at the pharmacy, just in case.

I am working on a few winter outfits, looser and softer. Guess the timing was better this way. Summer's t-shirts would not be a good look. My new permanent undies, my Amoena camisole, squishes my existing breast. (Back in seventh grade I had a Latin teacher, dear Miss Chew, who wore undershirts. Her bobbling boobs and her underwear probably made more of a memory than declensions and verb conjugations on us young female students with our own emerging Breast hopes. Why are bust lines so important and memorable? At least I finally have more compassion for this teacher).

I am in the middle of a gut renovation of a Florida condo. Flooring, bathroom tiling and the kitchen are going in this week. I would like to go down and work on colors, counters, backsplash. I really do not want to do these remotely. Florida light is very different from Rhode Island light. The condo will be very peaceful, pale grays and whites with pops of fuschia and cobalt, pale pinks and light blues. I would like to get it right the first time. This is our winter home for the next chapter of our lives, my 28th address with my traveling guy in forty four years.

As we age and health becomes more precarious, I need to be grounded. A simpler life in a serene setting works toward that goal. Every day is precious.

I am trying to control what I can control here. I know each of you are, too, in your own way with your own situations. The different manifestations of this disease, the different treatments, the complications and side effects and variations make a never ending story.

How does Pink Awareness and all the fundraising and pink products fit in our landscape? I wonder.

Drain coming out today. Just got the call. Have a good day, all!

Joy and serenity in this moment. It is the only moment I am assured.

Sharpei

Congratulations on losing the drains today, Sharpei. I'm sure you'll feel quite liberated once they're gone.

As for the pink/awareness issue - NOTHING I had ever read or heard gave me a clue about what breast cancer is really about. I considered myself pretty aware and well-educated but, as is the case for most people, that barely scratched the surface. Furthermore, I think a lot of the discussions are downright misleading.

Last drain out till the next drain, I guess. Yeah! For the third time, I did not feel a thing when it was removed. I have some spongy bandages. It is funny how the hole can continue to spurt glickus for a few days.

More information. I was not deflated last week during surgery. I had a big seroma under Sharpei's black nose. I was swollen. So I am still at 300 cc's. This is good.

Stitches not out for another 12 days more, however. First fill in two and a half weeks. Doctor said she could double up on a fill. I suggested we wait and see how my irradiated skin responded to the first fill and she agreed.

Things change. Stories change. Pain and swelling subside. We heal. Then we will meet the next challenge. We can do it.

Drove to a store having a big sale today and bought some soft shirts, an eggplant poncho, some warm, soft, pretty looks. I drove to another store and bought my steel cut oatmeal. Self sufficiency felt good!

Sharpei

I waiting two weeks for my pathology.....I suggest asking of a copy in your hands from your doc rev!!!

Thanks so much to both of you for helping me out here. After I posted what was going on I called asked first doctor I saw, he wasn't my regular doc, the silent one was, to call me. He called me right back and said they did not get complete path sent to them he would call to get all of it. He also said he would take over, doing referral to surgeon I wanted to go to, did research on that, he made an appointment for Monday to go over a plan so feeling better about that. He has 20 yrs under his belt the other doctor has 2 yrs. I know I will be having double mastectomy, not as afraid because I found all of you. Chemo for sure because of the reoccurrence. I can't believe I am here again. Thanks so much for your support, it gives me courage. Just wish I could keep my hands from shaking.

Thanks for responding.....glad to know what I am experiencing is normal. Next week I start CC injections....Still do not know if chemo is on the horizon. They sent more of breast tissue off for further testing.

I saw my BS on Wednesday, and apparently I overreacted a bit with the Radiation doctor. She said that SHE would have rolled her eyes at me if I had said to her what I did about my odds going up to 33.3%. I don't think she actually would have but she explained that this is how they spoke...doctors don't bring .3 or whatevers into percentage. And this is from a woman that earned two degrees from MIT before deciding to go to med school.

Another thing that she helped me make sense of...she's only had ONE patient that had radiation with implants. That being because very few women are even candidates for immediate implants. It's so obvious now when I read down the list of the October surgeries, so many TE placements or exchanges but only a few immediate implants! She also told me that the reason the radiation dr wanted to see how I was healing was because the degree to which he needs me healed to start radiation is probably not the same as what she would consider me healed.

My BS really didn't want me seeing another doctor at the radiation center I was referred to, she said that neither of the other two doctors went to the weekly meetings that the oncologists and surgeons go to. The only place she would have preferred I go to would be an hour drive each way, for 28 days (excluding weekends)...I just can't do it...too much time, too much gas, for 20 minutes in and out the door. It's probably dumb of me, I should be willing to drive HOURS if I have to.

As it was she gave me the name of the lesser of the two evils (lol) and I called up to schedule an appt...I told the scheduler that I wanted to make an appointment but that I wanted to switch doctors. After putting me on hold she said that she would transfer me to the nurse's line because I old need to discuss it with her. I left a voicemail, got a call back in the afternoon and was told that if I wanted to switch doctors I would have to "start all over." Say what? I explained that I'd seen the dr for a brief meet & greet back in May, and an appointment on Monday...no exam. Oh. Ok, well I still need to see the second dr as a new patient. Thank you, that's fine! I see him next Thursday, hope he's nicer than the first.

Also, my BS was nice enough to draw me a picture of my incisions because...I STILL haven't looked! And I need to because apparently there's a few small scabs that, when they fall off, will need neosporin applied to. I asked what the scabs were from, she said just a few places where the skin was really thin. YIKES, what happens when the scabs fall off?! Am I going to have holes? The picture she drew does not look bad at all, there is an incision straight down from the center of where each nipple was that meets an incision that follows the natural creases underneath my breasts. Does anyone else have a hard time looking at their breasts? I think I could deal with the scars, the one in my armpit looks to be about 2" long and doesn't bother me...i think it's just looking and not seeing any nipples that is going to freak me out. Obviously I KNOW they're gone, but to see it...I'm still not ready.

And now, since I seriously doubt any of you amazing ladies were able to read through this without getting completely bored, I am going to take the time to say this. It's been exactly 3 weeks since my surgery, I'm tired of my armpits and breasts feeling tight and achy and not being able to reach things or move freely...but I don't care about that because all I freaking want is my hair back, more than ANYTHING!!!!!

Revelle, you don't ever need to apologize. This is the one place where you can say anything and everything, whatever you're feeling. I know what you're going through, no husband, no family other than my 20 year old that flew in for a week and a 12 year old at home that I try my hardest not to burden with any of this cancer stuff. When I was going through chemo I would stay up for hours reading the chemo boards. I only registered and started posting once my surgery was scheduled, and wish id done so sooner...there are so many amazing women here. And it's ok to be nervous, scared....I was absolutely terrified for weeks before my surgery, and I can tell you that that terror and my fears were so much worse than the actual surgery and recovery.

You'll be ok. Just breathe. And if you need to ask your doctor for some Valium or Ativan that's ok too. (((Hugs)))

Revelle, no need to thank me, and I can easily say that most of the time I feel like the least wisest person on these boards! Gosh, I didn't realize you had gone through this whole routine already, I can't begin to imagine what it must be like having to go through it again. But you sound very strong and determined so that will be a big plus on your side

Hummingbird-I was able to work through chemo because of a great suggestion from the nurse practioner who is my case coordinator: I had my chemo treatments every othr Thursday afternoon. Friday I would still feel good, Sat. and Sunday-total rest, Monday-a little struggle to concentrate with chemo brain. There were four days of mandatory meds-then I would only use compazine for a day or two and feel good by Tuesday.

SCMOM, I had one scab, it was the size of a nickel.  When it fell off, it happened while I was drying off from the shower.  It felt kind of like a sharp pinch when it happened.  It did not bleed and behaved like any scab one would get from a skinned knee or something.  I was totally afraid to touch it or anything before it fell off.

Thank all of you for sharing.  It helps so much to know what we're feeling is normal and that I'm not the only skidddish, scared person over "silly" things like scabs.  Drs. can't help like you guys because they haven't been there done that, so sometimes it's hard for them to answer us or prepare us.

Happy Friday Everyone!

My heart is just breaking for all of you, for being here in the first place.  I know I have been fortunate.  All of my Drs. are great.  I've had serious side effects, but great outcomes.  I want to bitch slap half of y'alls Drs.  I can't imagine going through this with school age children.  I've tried to put on the happy face for my grown son and my Dad who lives in another state.  I cover up a lot from my husband.  I do a lot on my own, Dr. appts. etc., but that is to keep him calmer and our life as normal as possible and to empower myself....for some reason I think that will help in some weird way. He's not been "model" through all this, but at least he is here.  He can be a real non-understanding pain in the butt sometimes, but he also centers me sometimes when I'm about to go off the deep end and he makes me laugh....that's good medicine. 

Thank God we can vent here and get good tidbits and information and grounding.  Y'all are like an insulating blanket.