Just got the call

I'm off to the surgeon to get the first batch of information. Wish me luck!

Thanks Mod,
I started a new thread for the path results (not complete yet)

https://community.breastcancer.org/forum/5/topic/8...

The decision about the surgeon was made easier because he said although he is willing to do the surgery, that he did recommend a BS. So I didn't have to agonize over that one. On my way to my GP right now, so she can help me start to coordinate things.

More later.

Thanks for sharing your experiences ladies. I'll try to answer everything in one post.

I thought I might consider the surgeon I had been working with until I read some of these replies and other threads. He said nothing about tests that had to be run first, like breast or body MRIs, or genetic tests. He said it would be surgery and then I'd be sent off to an oncologist for anything else. It didn't feel like a team effort. There was one other thing that made me uncomfortable. When I asked him to explain something on the pathology report, he clearly gave me an incorrect answer. I didn't know it at the time, but when I went home I looked it up and something he told me was a "relatively benign" indicator has actually been studied and found to be the opposite. Maybe it's not wide knowledge in general surgery, but it was a study from 2002 that a breast cancer specialist would have known. I asked him how many breasts he does and the answer was around 50 per year, including all breast surgeries not just cancer surgeries. That's only 4 per month. Some surgeons probably do 4 or 5 times that or more, and they understand the intricacies of bc, and the aftermath, and not just how to cut things out (like all my lymph nodes -ShetlandPony that blew my mind!).

I think I'm right to trust his first instinct which was to kindly tell me he thought I would be better off with a breast cancer specialist. He wouldn't want to say so but If he felt fully qualified to do the best job possible for me, I don't think he would have advised that. Makes me respect him even more for being honest, but that doesn't mean I want him to cut off my breasts. If I ever need a liver transplant though, he's my man (what he's known for).

My PCP told me today that one of the surgeons recommended by the breast center in lieu of the one on vacation does have extra breast training, so I guess I'll at least meet with him and see what he says, before I subject myself to what seems like the last resort - the woman who always has one foot out the door when you're trying to ask a question.

Two reasons to do the lumpectomy first. 1) The mastectomy will ultimately be done by the doctor I actually want to do it; and 2) Shorter recovery time - my sister is coming to visit in three weeks and I would like to be able to enjoy it, since I might not be enjoying much for awhile if I need to have chemo and radiation. Still haven't made up my mind but thinking of the pros and cons.

About general anesthesia, my fear isn't about a reaction, it's because I am mortified by the idea of people doing things to my body while I'm unconscious (did anyone hear that recording that was going around the internet a few months ago). And of course the probably irrational fear of not waking up. I had a panic attack in the bathroom the last time I had a surgical biopsy and almost ran out of there with my butt flapping in the wind. So that's definitely a pro for the mastectomy, only having to do it once. Too soon to say what I'll do about reconstruction, but right now I'm leaning against it. I don't want anything in the way of finding a new cancer.

Had a nice visit with the CAM doctor today. I start my acupuncture and energy work in week and a half, and she's going to help me detox my liver so it will hold up better to chemo. She is an MD, acupuncturist and Traditional Chinese Medicine practitioner all in one.

Probably gonna take tomorrow to rest, then I'll spend some time over the weekend coming up with a list of questions to ask the new surgeon. Thanks to all for getting me started.

Nothing I do is working out. Where we left off: The surgeon I wanted was on vacation so I had to choose another. I thought I came up with a good compromise by making an appointment with the preferred surgeon's nurse practitioner, just to get an idea of how they would usually handle things so I would know if I wasn't getting the best care elsewhere. I didn't ask for the appt. with the NP, I told them what my concerns were and they offered. That was last Thursday, which had me feeling pretty good about it until they called me this morning saying there had been a misunderstanding and they had to cancel the appointment. They don't do that, she said. She also said that after the surgeon returns from vacay she's already booked up for a couple more weeks weeks, but they refused to make me an appointment in advance to reserve the time, because after I'm established with the other surgeon she would be a second opinion and they won't even set up the consult until she is back in the office.

Still haven't received a call back from my PCP's office regarding the referral. She had written in her notes that I was having a lot of anxiety and she wanted me referred as soon as possible, but I can't get through to her directly and her staff isn't calling back. It's a freaking bureaucracy where you can't just speak to a receptionist to relay an urgent message , you have to leave a message on your "team's" voice mail and wait for a phone call "usually" before the end of the next business day. I left a message Friday morning.

Everyone I talk to is doing everything possible to make this as difficult as possible and to prevent me from receiving the best care possible. I feel like they are trying to kill me, just like the radiologists who missed this cancer for 5 years when I had been complaining about the itching that long and they kept dismissing my concerns. In hindsight I believe an MRI should have been ordered when there was an issue we couldn't find the cause of because my breasts are so complicated. Unfortunately I didn't know to ask because they kept telling me everything was fine.

I'm feeling pretty cursed right now.

Thanks SP and RE. I live on an island and there are only two surgeons who are BC specialists. We don't have a lot of choices for quality medical care. I can go to the mainland for a second opinion or to devise a treatment plan once I'm staged,but not possible to stay any length of time to recover from surgery or receive treatment because I run our family business and I'm the only one who can do it.

I agree that I need to get out of the bureaucracy. Now that some better things have happened today I guess I'm going to look at it as a blessing that I was forced to look in a different direction.

I decided to go with the surgeon I don't care for personally because she is one of the best. She is an independent doc and doesn't have any kind of support system, which is not what I wanted, but to get the top notch multi-disciplinary team under one roof that I thought I wanted was only going to mean misery and red tape all the way through. So I'll just be my own navigator - I'm enough of a control freak to pull it off. Seeing the surgeon Thurs. That is not the good part, but it's an issue resolved. Finally something (my freaking pathology results from the biopsy still aren't final a week later! How long does a darn FISH test take?)

What was good was that I found a Naturopath today (only four of those covered by my ins, to further illustrate how limited our choices are). I called him up and when I told him what I've been going through he got me in this afternoon! I can already tell this man is going to be my saving grace (mentally if nothing else!). What are the odds that I choose a random guy out of 4 and he just happens to be the top cancer ND on the island. He sees at least 3 cancer patients per day. He has many patients who were given the mainstream medicine death sentence who are still alive and kicking, or at the very least who had their lives extended over originally dire predictions. Everyone in the waiting room was so friendly and expressed their deep admiration and respect. He was the first one who made me feel that no matter how bad the diagnosis, I still have a chance (I'm pretty worried about this back pain I've had directly behind the tumor, and in my liver area).

He also recommended an oncologist who he has worked with for years who is amenable to the natural stuff we will be doing along side the conventional treatment. He does many of the alternative tests and treatments I thought I was gonna have to go to the mainland to get (only considered alternative in the US - they've been using them in Germany awhile). And he doesn't do any of the crazy "just have faith and pay me" stuff with no science to back it up, which is important to me. I believe in nature and I believe in science, and I don't think either one has all the answers.

So ladies, after all I've been through, now I at least have a plan, and the beginnings of setting up a team of my own that I actually feel good about. Guess I'll put this thread to rest and continue my journey in a new one, now that I'll actually be moving forward.

Thanks much for your support!