Appointment with surgeon - more questions than answers

Details of Scan Results Day:

It only took a few minutes. She walked right in with a big smile on her face and blurted it out: everything looks good! I have the arthritis on the right side, which explains what I mistook for pain possibly due to an enlarged liver. And I also have a small benign lesion on my spine right where the worst of the pain is. So finally, an explanation! My liver was fine, except for a few of what they called "small areas of hypodensity." She said that only means it looks different from the rest of my liver but it doesn't indicate any problem, and wouldn't be the cause of my elevated liver enzymes. Just have to keep an eye out for changes on future scans.

Then we talked about treatment. What I found was that even though I was feeling rushed and scattered at our first appointment, she had really listened to everything I had to say, and she has been formulating a more solid recommendation since then. She had already spoken to the surgeon about the possibility of having the surgery first. All that was left was to discuss my priorities, which I had laid out here several hundred posts ago:

"1) extending my life as long as possible; 2) preserving as many lymph nodes as possible; and 3) doing the least amount of long-term damage as possible to the rest of my system from the chemo. I would be looking for the least aggressive but still effective treatment possible, and I do realize there may be some trade-offs to achieve this. All I need is enough information to decide what I'm willing to trade."

So what were the trade-offs? To get #3 I have to have the surgery first, because she can't know what the least toxic but effective treatment might be if the cancer isn't staged and graded. She also said that strongly ER/PR+ cancers like mine (100%) don't always respond as well to chemo (not never but sometimes) and if that happened it could lead to possibly more aggressive chemo, and maybe before and after surgery, so more total chemo. One more thing she mentioned was that since we still don't know the size (it was 1.6cm in the CT so now we have 3 different measurements, not even close), or the stage/grade of the tumor, and all of my lymph nodes looked so normal in the scans, there is still a remote possibility I won't need chemo. If there is any chance of that happening it is worth doing what it takes to find out. Stranger things have happened to me!

Clearly surgery first with sentinel lymph node biopsy is the way to go. So the trade was that my lymph nodes won't be down-staged from the chemo at the time of the surgery, and I could lose more nodes than if I had done chemo first. But she said they never just go in willy-nilly cutting out lymph nodes anymore - they do everything they can on their end to help a patient avoid lymphedema. Very nice to know that is becoming the standard, and fewer women going forward will suffer.

They will do the mx of the right breast first to remove and stage the tumor. Then when I am healed enough from surgery I will have chemo if necessary. After I'm back to health from the chemo I will have the mx of the left breast, and think about doing reconstruction at that time if I want to. I feel good about this plan.

One thing I forgot to ask about was the Oncotype, and some other tests my ND recommended that help them to target the systemic therapy to the cancer. I was thinking we would do that later since chemo is probably a month away, but duh, they need to get that going asap so we will have the results by then. I'll talk to the surgeon about it on Tuesday and I'm sure she can speak to the oncologist for me. I'm really lucky that in choosing my own treatment team I ended up with two women who know each other well, work together all the time, and communicate directly about their patients. And they were recommended by two different sources, so that really was some good luck!

I slept like a baby last night and haven't even looked at the bottle of Ativan today. I also have a few days of rest before I see the surgeon Tuesday and have to plan for the surgery.

Thanks again for reading!

OK, this is not good. The surgeon's office just called to reschedule again and the next available appointment wasn't until September 9th. The doctor is supposedly sick, but the assistant (the same one I have written about who gave me trouble making appointments in the past) sounded like it was not a sure thing that the doctor would agree do the surgery after seeing her on the 9th, which could leave me starting from scratch at that late date. My oncologist told me she spoke to the surgeon and she said she was willing to do the surgery. Suddenly the only appointments she has available are very early morning, after the assistant noted I prefer afternoon appointments. First available date for the surgery maybe the 17th or the 22nd, but she was really wishy-washy about that too. She said, or you could see another surgeon but you will have to get a referral from your PCP for that. They won't even give me a referral. I feel like my original impression that they don't want me as a patient was right, and I'm being blown off, but I can't tell if it's an issue with the doctor (since she did say she would do it) or the assistant just doesn't know that she already agreed to do it.

I can't wait til the 9th to find out I still might not have a surgeon. I called the other breast surgeon's office (the one that was on vacation) and they are saying that now that I have seen another surgeon I can't just schedule an appointment. My records have to be evaluated first for a second opinion, so need lead time for that, then three more weeks for consultation appointment, then God knows how long for the surgery.

I called random OB/Gyn offices to see who they refer their breast patients to, and I just keep getting the same two names I already know. Left a message with the oncologist's office to see what they suggest.

I have been holding it together so good, but this is really messing with my calm.

Oh for crying out loud! The backup surgeon I was referred to can't get me in for the new patient consultation until the end of September, and weeks after that for the surgery. Nothing but roadblocks on this journey.

Thanks BarredOwl, I did take the early morning appointment on the 9th, and also told them I'll take any cancellation that comes up in the meantime since my schedule is very flexible. They can just deal with my early morning personality for all they've put me through. Getting in to see her sooner most likely wouldn't change the date of the surgery though, because she is already fully scheduled. I had already resigned myself to waiting until the 22nd so I should be OK with no further delays. The assistant was very nice and apologetic this morning, so I think we are communicating better.

I start my first alternative treatment on Monday afternoon. Even if it doesn't work it will be a heck of a lot better than sitting around watching it grow. I'll probably write more about it on the Complementary and Holistic Medicine board.

Off to get my liver enzymes re-checked and the blood work the ND needs for Monday. Then hopefully I won't get pricked again until my pre-op clearance.

Thanks again ladies, for hanging with me.

Hi windingshores, I don't know the answer to that, except that it wasn't offered to me. I will be seeing the oncologist one more time before the surgery so I will ask her.

Update:

Started treatments with the ND on Monday, and also decided to do chemosensitivity testing through RGCC Lab in Greece. For those who don't know, they isolate any circulating tumor cells and/or cancer stem cells from your blood, grow them in the lab, and then test it against natural (like the high dose IV Vitamin C I'm doing) and conventional chemotherapy agents to find out which ones your cancer is most vulnerable to. That will prevent me from receiving any chemo that is ineffective for my cancer, when I'm trying to go the least toxic route, and will tell the oncologist exactly what will work if I do need chemo. Plus, since the natural therapies are out of pocket, I won't be paying extra for any of that stuff that isn't effective either. I'm taking a chance on the IVC in the meantime because, as I said before, it's better than sitting around watching it grow while I wait for surgery.

Insurance doesn't cover this test, but for anyone interested, at the current exchange rate it was $2,136. If they don't find any CTCs or stem cells in the sample - which would be good news in itself - the charge is only around $450. Money well spent in my opinion to target the therapies, which along with the Oncotype should lead to me receiving the most effective/least toxic treatments available for my personal situation. Should have the results in about 2 weeks, so prior to the surgery.

Finally saw the surgeon and everything is good for the 22nd. So nice to have a real plan!

More details here, and future updates will be in that same September 2015 Surgery Sisters thread.

Good luck and welcome to all of the newly diagnosed who come after me. Hopefully you'll find something in my very long story that helps you on your individual journeys. I'll be back to offer support whenever I can.