Just found out I have breast cancer. Please help about surgery, implants, decisions.

Hi, Deb,

I think it's wonderful that you're sharing your story with us. By reaching out like this, you're helping other women who are finding themselves in a similar situation and feel all alone.

I handle partnerships here at EmpowHer and just got back from a trip to DC where I met with some national women's health organizations to discuss possible partnering relationships with them. Creating partnerships helps EmpowHer provide greater access to much-needed info and resources.

Anyway, I met with one organization that has a web site devoted to breast implants. It's located at: http://www.breastimplantinfo.org/ Apparently, it's the only web site out there that provides completely unbiased info on breast implants, as it's not associated with any plastic surgeons or breast implant manufacturers. I just thought I'd let you know about it in case it might be helpful.

Please let me know if I can help find any additional info you might need.

Life on a boat sounds really nice, by the way.

Warm regards,
Kristin

I want to thank everyone for your prayers and words of support. If I didn't have people to prop me up I don't know how I'd have gotten this far. I realize I have miles to go, but it already feels like forever since I started down this tricky road.
I was having such a shitty day yesterday. I just needed to have some control I guess. So,...I called my hairdresser. I just needed to get me some normal. I've been with Ray 7 years now. I called him and said 'Ray, I really need to see you as soon as possible.' He said 'Ok,...come over now.' I wasn't expecting that, and said 'Ok,...well, maybe not that soon, I'm at work. Maybe tomorrow, or later today even?' So I left work at 2:20 and he got me in at 3:00 yesterday.
Thank goodness Ray's been at this forever, because if he'd said 'Hey! Lets shave your head and tattoo flames on the sides!' I might have agreed to it. But he doesn't believe in doing anything other than 'their usual' when people are in a 'state'. I got there and he said 'You sounded stressed when you called...what's going on hon?' I blurted it all out and of course he was shocked, and said/did all the things everyone does when we tell them. Thankfully he didn't cry. It wrecks me every time. So we talked a bit, and he asked if we were cutting. I don't know how I answered exactly but I'd have agreed to anything to have some control over my life again, even if it was only fleeting.
I never tell a professional their job and so it is with Ray. He was probably gauging my mental status to see how 'out-there' I was when he asked me anyway. I learned a long time ago that when I pick a haircut out of a magazine and then have it done to me it's always, always hideous. I'm just no good at it. I'll never look like those models no matter what cut, perm or color I pick. When I need dental work I hire a dentist. I hire an attorney for my Legal work. So I (finally) learned it's best to hire a hair professional too. So I go in, he does what's right for me, my hair, and my lifestyle, and I write the check. And I've never, ever come away unhappy since.
In the end, we did what we always do, some weaving highlights, a modest trim, Nothing drastic. And I went a way with a couple hours of normal under my belt.

On my way home, an RN friend called and wanted to meet for a bite to eat so I agreed. I'd been afraid to call her because I was afraid I'd break down a lot. But since I'd gotten my little slice of normal, the cape was back on, and I was 'SuperDeb' again. Ready to leap huge problems in a single bound!
Linda and I met for dinner and I told her everything. She used to work for Kaiser and knows the ins & outs of insurance and when she said '...Too bad that you don't...' I stopped her, because I knew where she was going, we used to work together. I now have a bag devoted to my newest project, 'Me'. In the bag I have two spiral binders for me and my appt buddy to take notes at dr. appts. Another file contains insurance stuff explaining policy and benefits, and then there are the various files containing reports etc. So we went over insurance and options and she gave me a to-do list of sorts. Talk to the counselor and support group. Get my resources together. Then interview the surgeon / plastic surgeon. She said I can't do it all at once....and of course that's what I'd been doing.
Today is a much better day.
Tomorrow I will be meeting with Linda and her 'ex' sister-in-law who just happens to be visiting this weekend after years of not having visited. This was set up before I told Linda what was going on, so I know it's not on my account. But she's a mentor or counselor for the American Cancer Society Breast Cancer. She had the flap done 10 years ago I think Linda said!
Linda spent some time on the computer last night looking for resources for me too and has had many dealings with the place in S.F. So she's got paperwork she wants to pass on to me. So I'm leaning in that direction today.

I found one surgeon in the SLO county that does flap surgery, Dr. Charles Chalekson in Templeton and his work is said to be very good. He's the only one within 300 miles of here that does it. He does not take Blue Cross Blue Shield but I was told that they work with the insurance company on surgery...whatever that means. He also does the flaps at the time of the mastectomy for a good candidate I'm told. The consult is $179. They don't work with the insurance company on that. He's on the back burner for now.

Ok...here are todays' ponderings,...

A coworker asked me yesterday about the flap. She's sure that's the way to go because of the 'bonus tummy tuck'. Since the flap is skin and fat from the abdomen, she asked, if I were to lose weight, would I lose some of the fat in my breasts as well? I should think so, since it's fat, but I don't know. But maybe I best put more up there from the start...just in case. And I have it too. Remember I'm still subscribing to the A cup, B cup, and C cup lunching plan until I rule this flap thing out.

And then I was wondering, with the flap if there is the same...lets call it 'sag-rate' that has slowly occurred to my breasts over the years, or if the new ones will hold up a little better since they're made of different stuff.

So how does anyone afford to have cancer anyway? And be off work for weeks? I'm not married and far from being well off. I live on a sailboat because I can't afford to have a land based home and a boat. Turns out I love living aboard, so I'm ahead of the game. Well, sort of.

You all have been incredibly helpful in this, I can't begin to tell you how much. Thank you for your prayers, words of wisdom, and helpful suggestions.
I gotta run. Someone wants to feed me again.

Deb

Hi Deb:

You shouldn't feel concerned if you have bad days - it is part of the process of dealing with it all. It sounds like you have some good coping mechanisms and the support of those around you.

I'm not sure if you are religious but you are in my prayers.

ps. You are a great example by sharing your story with other women as you go through it.

I know you're right. And Jack is backing you on this. He says he'd be hurt if his mom didn't tell him, just as my son will be if I don't tell him. I could even have told my son yesterday, I was strong and positive and thought this just a small bump in my road. Jack and I are having dinner with my son and his wife at our favorite restaurant this coming weekend, and I hope to be able to tell them then. I had it all figured out. I'd do this little remodeling project on my body and move on but, that was yesterday.

Today I'm having a difficult day. I was trying so hard and to do well. I've been able to pretend that I'm fine, so people are feeling better and not popping in all the time to check on my mental status. I laughingly call them moles. They come in to check on me and we laugh and make fun, then they feel better and go back to report to the others. And I appreciate every one of them. But today I'm alone in the office, and with no one to pretend to, I'm back in the hole. I don’t like these ups and downs.

I'm so confused, and may be looking at implants now. I was against having implants, didn't want that foreign body in me, didn't want the possible complications down the road. I want low/no maintenance boobies if I'm gonna pay for them. I want to finish this remodeling project and be done with it. The rest of me is low maintenance, and there's no special treatment. I start making a big deal with the boobies, next thing I know the uterus is going to start getting jealous, acting up.

I have so many questions...
Why do some decide to go with implants as opposed to the DIEP flap?
Do implants look, feel, and move like real ones?
How long is the hospital stay for DIEP flap?
How long till you're 'yourself' or recovered from the implant reconstruction?
How long till you're 'yourself' or recovered from the flap reconstruction?

Yesterday I went to see Dr. KePing Tsao a plastic surgeon in San Luis Obispo, and for the record, I did like him. But for as much as I thought I knew what I wanted to do, and how I wanted it done, I now have even more questions. I did my homework and thought what was best for me was the DIEP flap, at the time of surgery.
Now I may be looking at the bi-lat mastectomy and recovery time before I move forward just so I don't have to be in LA for what I was told was several weeks.
My head aches from trying to sort this all out, I came away with information but please understand that if it’s wrong, or bad information, it’s because I may not have a good grasp of it yet and it is me, and not Dr Tsao that’s a bit off. I’m having a hard time remembering, and I’m getting things crossed up in my mind, it’s all so overwhelming.
Ok so here's where I'm stuck today.

1) If I want reconstruction done at the time of the mastectomy I would need to go to someplace big like UCLA or San Francisco because it’s like having 4 major surgeries at the same time, and I would be in surgery quite a long time. I would need to be in LA (or SF) for many weeks of recovery.

2) The breast implants are less painful and take much less recovery time than the DEIP flap, but can be started at the time of surgery. Implants are the quickest way to get my life (and my breasts) back.

3) With implants, long term I could have issues and require replacement. Implants have a low rate of failure, deflation and encapsulation but there is some chance of that. You can never know how someone’s body will react to them so encapsulation does happen, just not often. (I asked the dr about a local woman having 3 deflate, and he kind of blamed it on sloppy workmanship by the dr. I believe there was probably more to it.)

5) The DEIP flap surgery is more prone to complications up front, but long term has fewer problems and using one’s own tissue is a good thing.

How am I ever to decide? How does anyone? Dr. Tsao said that when I’ve reached a decision I will be happy and content with it. Well, I’m waiting.
I know, I know...pushy pushy pushy.

Deb, I want to encourage you to not feel that you must keep so much information to yourself. Your son would want to know what's going on. At 31, he's a grown man, and can be a strength to you -- instead of someone you feel you have to partially still carry.

I know that if you were my mother, I would want to share your experience, and I might be hurt if you chose not to tell me. I might think that you thought I couldn't handle it, or that I wasn't adult enough -- and most of all, I would be sad that you didn't think I would be a strength and support person for you. So think about it. When we tell a secret, somehow it loses its power.

I think your baby steps are huge and important. Yes, your son will be scared. But he will move through that step and be there with you and for you. Being able to be there for a parent is a crucial thing for a child. Don't take that away from him just because it seems worrisome now.

You are doing great. Hang in there, and keep us updated. We're here for you.

My son is grown, 31 and is married. I know I should be upfront with him, and will do my best. I just don't want to scare him or his wife. I wasn't going to tell him at all. His good friend is 23, an only child, and his mom has Cancer and is struggling. (The dad died years ago.) I told my son that if anything happened to the friends mom I'd have two sons because we weren't going to have him out there alone in the world.

I was just going to push through this and (hopefully) have reconstruction at the time of surgery and move on. Someone asked me "What if they can't do reconstruction at the time of surgery...think he'll notice?" Notice my breasts went missing? Yeah,...I suppose so. As would everyone else. (We're guessing there's some healing time before the prosthetics can be worn?) Then she said "Well...don't you think maybe you should tell him before surgery rather than after?" Good point. I decided to tell him after I know more. I'll be stronger when I have more information. Baby steps. This thing is forcing me to do a lot of things differently than I've done them before, it's a learning process. (but I'd rather read the book.)
As for the boat question, I'm not worried about sailing right after the surgery, I don't live in a smooth sailing zone (Wish I did) so I will wait till I'm able. I'm just concerned with being able to get back down into the boat after surgery. There's a lot of climbing around on a sailboat like this one, always using arms, tummy muscles and back and I'm not sure how difficult it'll be fresh from surgery.

I just lied to my son. Told him nothing new was going on. I was sorry for having said it immediately. I don't believe in lying,... not until now anyway. He called to catch up, and ask about going out for dinner. I had Laryngitis on Mother's Day, so we made plans to go out for dinner the next week but then all this happened. I'm not ready to tell him yet. I keep saying 'When I'm better armed with information.' I will tell him, and before surgery, not after.

My mastectomy surgeon is Dr. Edwin Hayashi with Associated Surgeons of San Luis Obispo. He's a General, Vascular and Thoracic surgeon, Diplomate, American Board of Surgery. He says he's done a lot of mastectomies, but if he has it's not well known because a lady I've been put into contact with had him as a surgeon for gall bladder, but didn't use him for her mastectomy.

The Plastic Surgeon I do not know, but Dr. Hayashi said he has worked with Dr. KePing Tsao many times, and he is very good. I will meet with Dr. Tsao tomorrow afternoon and have a friend/coworker going with me to that appointment. Even having a friend go with me is a huge accomplishment for me, I never allow anyone to go with me to such things unless I'm not allowed to drive myself home.

I am a private person, a solitary soul, and living on the water in a sailboat is probably a pretty good indicator of that. Not a lot of single women choose that sort of lifestyle. But it's peaceful (mostly) and serene and means the world to me. I don't think I could live long-term any other way. I would wilt.
Two co-workers have offered their guest rooms, and offered to care for me, but I just don't know if I could do it. If I can just get on the boat and down into it, I think I'll be ok.
I finally told Jack Saturday night. (We've been dating a year and a half) It took me a few (several) tries, and it was hard, but I got it out. I had to take a couple different runs at it because he wasn't hearing me. When he finally did hear me he said nothing mattered but my survival, and us getting through this.
Jack can stay with me a few days to help me get on my feet. He wants me to come home with him, and I may do that if I don't think I can manage the boat. Last night he asked if there was counseling, for me and for him as well so we'd be better prepared so I need to get that lined up as well. I don't even know how to start.

Deb,

Be easy on yourself. You've had a huge shock. I think the fact that you have been depressed and worried about it all is absolutely normal.

Is your boat big enough for someone to stay with you? I imagine that four steps is not too much to handle, but that you would benefit from someone being around for at least a few days after the surgery just to help you out. I know it will be comforting you for you to be on the boat, in familiar surroundings, but your first responsibility after the surgery will be to your body -- to heal and help it thrive as you move forward -- and so I don't want you to push yourself too far those first few days. If you have a family member or friend who would open their guest room to you for a few days, that might be even better -- though I imagine that the rocking of the boat is one thing that helps you sleep at night knowing all is well.

This is your biggest challenge, but you know what? After the surgery, it's over. You caught it early. That is HUGE. So many, many women catch their breast cancer later, and they must undergo chemotherapy and/or radiation. The surgery is scary, I know. Both physically and psychologically. But not having to fight with drugs and radiation afterward in hopes that you can eradicate it is a very big deal.

Are you a bit of a solitary soul? Is all these appointments, all this business, all these arrangements on dry land extra stressful for you? Because the "pain" in your friends' and family's voices is empathy, you know? They don't want you to have to go through this. And neither do you. But they will be your biggest strength as they support you through it. Let them in as much as you can, even though I know it's hard. It isn't that you're needy. It's more like this: In the crunch times, we're all in this together.

Tell me a little about your surgeon. Is he a general surgeon? Does he have experience with mastectomies and/or reconstructions? The fact that you like him is very important. But I think that you do have time for a second opinion. Find a specialist and when you call to make your appointment, tell them that time is very limited and ask if there's any way they can see you. A second opinion is important information. If the second opinion agrees with the first doctor, then you go ahead with even more confidence. If the second opinion disagrees with the first doctor, you have new questions to ask of both of them.

Often, your own doctor can refer you to a second doctor for another opinion. Doctors do NOT mind their patients seeking more information. I have never, once, heard a doctor who said they minded this.

And being as proactive as you can be may help you feel a little more in charge of your situation. Since you are the captain of your own boat, literally and figuratively, you are not used to feeling out of control. I think that seeking a second opinion might help you feel more in control. However, you may feel quite confident after you meet with the plastic surgeon, too. This is about you, your feelings and your level of confidence when you go under anesthesia that your doctors will take care of you, that they know your choices and that your recovery will be the easiest that is possible.

Here's what I expect for you: That you will put one foot in front of the other as you make these decisions. That you will slowly become comfortable with your wishes as to reconstruction. That your surgery will go well, and your recovery just as well. And that soon you'll be writing us from your boat saying that you just got back from sailing to somewhere fantastic, and that all is well.

I can see it.

Please keep us updated on your journey and your doctor's appointments and your thoughts. And please let us know if there is anything at all that we can research for you. EmpowHer is here for you. That's what this site is all about.

Thank you for writing, I wonder will I need to find someplace else to stay after the surgery? I live on a sailboat and I have 4 steps to get up to the boat, then I'm on. From there, I have to get over the cockpit combing, so there's a couple steps up into the cockpit and I have to hang on to the rigging usually. Then 5 steep steps to get down inside the boat. I don't know how agile I'm going to be or how much strength I'll have. I know I'm just going to want to go home and go to bed, but I wonder if that's even going to be an option for me.