May 2016 Surgeries

I have another question, how is your partner reacting to all these? My husband had seen the wound at the hospital once but not since then. I understand it's difficult for him, but I don't have the energy to deal with his feelings. Yesterday I cried and we discussed about it. I think he finally understands that I don't have anyone else for emotional support. No mother, no sister, my best friends can't cope with this. Btw, we're married for almost 24 years and he's helping a lot in all the practical things.

Midwest - I think everyone is different and it may just take time for your husband to come to terms with this. My DH has seen the scars on a daily basis and was always the one to strip the drains for me. However, his mother was an invalid from the time he was 12 and he was practically an only child (1 sister much older) so he has had a lot of practice as nurse to ailing women in his life. Because of this, I also do not share a lot of my feelings and emotions about what I am going through because I think he is burdened by them, even if he doesn't show it. Instead, I just come here and let loose For me, knowledge is power and helps me deal with what's going on (as you can probably see from my posts:), but I also have 2 sisters that I can talk to and a friend who's sister recently died of BC.

Are there other survivors that you can talk to? I have been in touch with a women who is part of a survivors group affiliated with Johns Hopkins, where I had my surgery. She calls or emails about once a month to see how I'm doing. She had cancer so long ago she does not even remember what kind of BC it was. Also, in my area there is a breast cancer coalition that holds events. They just did a 5k walk/run and they are going kayaking in a few weeks. I will probably get involved after I'm fully recovered. I wonder if there is something like that in your area? It would be a way for you to connect with people that understand what you are going through. In any case, feel free to PM me if you want someone talk to.

Moreshoes - I am sorry your partner is taking it hard. I don't have much to say - I don't have anyone else for emotional support but my partner either, and when he's fed up or sick of hearing about it he gets snappish and I just have to remember that he didn't sign up for this either. Neither of us did. And we both handle the stress in different ways.

About your daughter - here in the US those of us with genetic factors can still be denied life insurance, but the rest (mortgage access, employment discrimination) is supposed to be covered under the Genetic Non-Discrimination Act (GINA) that was passed a few years back. I hope your country gets something like that together by the time she needs to get tested. I know here some women delay testing for that reason. In fact, that's one thing the genetic counselors told a group of us - buy all the life insurance etc you want and get it in place before you get tested (assuming you have the money, which young folks usually don't). It's a shame that these horrible choices are overlaid with societal and financial penalties for something we literally cannot help and cannot change.

Good to know, GreyKat! I had a needle biopsy done years ago and was surprised when I had my next mammogram done when they reported seeing the marker! The BS assured me that she did not put a marker in when she did the biopsy - the mammo tech just didn't know what he was looking at.

MyToystory2, I'm praying you have an uneventful recovery from here on! Saying prayers for you!

MoreShoes, I'm sorry your husband is not there for you emotionally; I hope your talk helped. I think people often forget that the partners are going through this as well, obviously not at the same level we are, but it's tough for them too. My sister had a UMX 18 years ago and my brother-in-law has been great about checking in with my DH on how he's doing through all this. I second grandma3x's suggestion to try to find others locally that you can bond with. There may even be a group that your husband can participate in too - it might be that he doesn't want to burden you with his issues.

myToyStory2, I really hope the abx start to kick in and that you get to keep your TE. I'll be thinking of you!

And the fun just keeps on coming here.......new today! The incision from where they excised my left nipple is leaking as of this morning. All of a sudden; just like that. And I mean leaking......like a faucet that hasn't been turned off completely. I've got it covered with a sanitary napkin right now to absorb the leak; I'm hoping it slows down or I'll be dealing with that every hour or so. And, of course, I have a day full of appointments and commitments outside the house so I get to deal with this while running around today. Oh, goody! One of my appointments this morning is with my MO, whom I haven't seen since just after my dx, but I doubt he'll know or be able to do anything about it - he's very hands-off wrt the surgical stuff. I have an appointment with PS again tomorrow; guess I'll just deal with it until then. *sigh*

So, I just got back from my MO office and I'm a little pissed off, but I'm not sure who to be mad at, them or me. When they recommended the BMX they were concerned with a "possible" area of invasiveness. The MO told me this morning that there was, indeed, a small area of invasiveness. What I'm pissed about is......at nearly eight weeks post-op, don't you think someone should have told me about that by now?? Then again, I didn't take any affirmative action to find out on my own either, but....I just feel like that should have been someone's job to let me know before now. I'm a HUGE proponent of being your own aggressive medical advocate and I guess I'm mostly disappointed in myself that I didn't pursue this sooner. Oh well. I've got enough going on right now I don't need to be so hard on myself on top of it, I suppose.

The good news in all of this is that the size of the invasive tumor was only .3 cm and the biopsy of the one lymph node was benign, so there is no recommendation for chemotherapy or any other adjuvant therapy (I'm HR negative, so no hormone therapy either.) Plus, between that news and the positive gene results, I feel better about my decision to do the BMX overall - I was really starting to second-guess myself with all the crap that's happened.

Guess I need to update my dx info now from DCIS to IDC.

Raven, it is not getting boring anytime soon, isn`t it? Just hope for you it is something minor and maybe the oncologist will have a saying ,if not maybe you should let the other doctor know today. I will be thinking about you!

ToyStory2, glad you are home and may the luck be with you this time without any more detours.

The new thing for me, actually almost a week old, some sunken area above the new breast toward the inner side, under the calvicula, not there before. Asked the PS about it and he said it is about the lack of tissue breast there and to not worry, a fat grafting would fix it( but that was not in the plan). BUT it was not there before, maybe the fills make it prominent now?

Grandma3x, have an easy half day at work, let us know how it went!

Have a good healing day to all.

WenchLori, thank you for stopping by so often, that is very sweet of you and have a peaceful day!

I don't know why, but some doctors are touchy about giving us reports or notes from our own medical file. I request a copy of everything, and if they are reluctant to give it to me, I just go to the medical records department. Yes, I still have to fill out a form, and they will usually charge me 25 cents per page, but it's worth it. You can also ask (and should ask) for a dvd of all your imaging (mammogram, CTs, etc). At my local hospital, they don't charge for this, but they do if they have to print something on paper, go figure....Anyway, you have a right to all of the information that is in your medical records, so don't hesitate to ask. I will usually try to get copies before I even meet with the doctor. It gives me time to process the information and be prepared with questions. The down side is that sometimes the news is not good. I knew I had breast cancer 3 days before the doctor told me.....

Raven - if it's IDC you should also get a HER2 status. It may not change your treatment plan, but would give you information if, God forbid, the cancer comes back.

I'm off to work in a couple of hours I'll be sitting at my desk, doing things I could just as well do at home, but I think I need to put in an appearance just to keep my students on their toes.

Raven - that's ridiculous. Just ridiculous. I got my pathology report at my post-op with my BS, but I've been looking at trying to get my operative notes for this whole crushed ulnar nerve problem, and I have to pay a flat fee of about $24 plus an additional $0.55 per page, and of course you've got to sign the release form to order them. The whole thing is annoying in large part because it's so expensive! - and I have no way of knowing how many pages things are until after the fact.

But anyway, sorry you're dealing with leakage! Can I offer you some STAPLES? (haha)

Midwest - I've developed a sunken area on one "breast" too, and the fills don't seem to be affecting it. I don't know what's going to happen because I haven't seen my PS since starting fills, but I do know he'd mentioned fat grafting as the next sort of thing after exchange surgery. Part of it is clearly the missing breast tissue, and I think part of it is the absurd shape of the TE I have, which are stretching all around (up and sideways too) instead of in the normal out/down shape of a normal breast. I think we have to just wait and see. My BS said she's seen breast tissue spread as far up as into women's upper arms and down almost to the abdomen - every woman is different. And maybe once in a while they accidentally scrape out some normal fat while trying to be thorough. So maybe that's what you're seeing?

Jacklin, are you talking about hyper-sensitive skin in those areas? There was just a discussion about that up-thread a little bit. Look for a post by SpecialK with recommendations on things to try.

Hang in there Raven! That is such a bummer about the incisions leaking! Sorry you are going through yet another issue!

Grandma3x, it was I who asked the question about the partners, not Midwest. Thank you very much for all the tips and advice. I do go to a psycholgist, she has helped me a lot through the years. Yoga and mediatation are helping too. I used to be part of a survivors' club but we had drifted apart and after they heard about me this time, they freaked out. I can imagine. I'll get over it and move on, I guess...it's just that I need to cry once in a while. My husband has never been getting the subtle hints, so I have to say clearly to him: hold me NOW.

MoreShoes,

I am two weeks out from my surgery too. I just saw the surgeon yesterday. I have dissolving stitches inside the incision. I also had steristrips (basically tape) across the incision too. Yesterday the steristrips were removed. The incision is closed and healed, no swelling or redness or discoloration, so I was given the ok to start lotion and massage now. You probably want to check with your surgeon first, but we are on about the same timeline.

I usually have to tell my husband, "you need to hold me NOW." He's not particularly good with subtle. In an emotional moment, it really frustrates and angers me. The rest of the time, we both laugh at his lack of understanding the needy hints. It's not that he doesn't care. It's like I'm speaking a foreign language.

You go ahead and let it out on here if you need to. Lots of understanding!

Just wanted to throw this out there on the husband thing - I bought mine a book (hes not a big reader so he laughed initially) called The Breast Cancer Husband. Cheesy title but it has been a source of conversation here and there as he's read a few chapters. There have been things in there that maybe I don't necessarily agree with (like all BC women want their husband to be strong at all times which I personally don't want, maybe some do) but it has given him his own set of resources instead of asking me every detail and has been good for having conversations about steps along the way. He hasn't read the whole thing yet but the reviews on Amazon were great.