A Consult with a Breast Oncology Surgeon

Today is a big day in my life as a cancer patient. My oncologist wanted me to have a specialty breast oncology surgeon look at my case. Because of my robust response to chemo, and the lymph node improvements, he wanted a specialist surgeon, not just a regular breast surgeon to look at my scans and results. He suggested a surgeon at the University of Chicago, rated in the top 12 of cancer care centers in the US. I asked why I couldn't just go with the breast care surgeon here locally, as I really liked her, she has excellent credentials. He basically said the difference in training and background was critical. All righty then...off to the Crown Point University of Chicago location for a consult with Dr. Betty Fan. The Crown Point location hospital is a small one, with 8 beds in the receiving patients for surgery, and 8 beds in the emergency room portion. It's only been open for one year. It's a beautiful facility and right off the interstate.

With my initial lymph node involvement in two places, the armpit and the chest/clavicle area, it's comforting to me that she has a highly specialized background in breast care.

We are determining whether I am a candidate for surgery which was off the table before, due to stage 4 diagnosis. My oncologist believes it's possible I could be downstaged to stage 3 due to the radiologist "overreading" areas of concern on the PET scans. He says it happens quite often. Better to err on the side of caution for treatment than the other way. BUT--he says she could also say no to surgery, where I would remain a stage 4 and in palliative care for the remainder of my life. I've made peace with her decision either way....I was not expecting to be thrown any kind of lifeline after getting my initial diagnosis so this is a bonus just to get to see her. I'm thinking that the lymph nodes are going to be the problem.

How can they "get it all" in surgery when rogue cancer cells are so tiny and you know that some are floating around, waiting to cause more havoc when they get the chance? Radiation could be on the table as well. So, we'll see what she says. 

And what she said was.....Because my targeted therapy results have been excellent, breast surgery is PROBABLY not my best option for now. One tumor (in the axillary area) does not show up at all on the PET scan, the other has been knocked down so far and even further most likely since two additional chemo treatments were administered. She carefully laid out a scenario. If the cancer cells are dead in the main tumors and there is scar tissue in the lymph node areas where other possible malignancies were spotted, she would have to remove a lot of the lymph nodes and a lot of tissue. There are high risks of major surgery. She would have to cut out a lot of scarred dead tissue. She mentioned severe lymphedema (swelling of the arm and underarm area) as a possible risk. She discussed the fact that the cancer could return somewhere else as a new cancer or more of more of the same kind DESPITE having surgery. In addition, there are wound issues from surgery that are more common than not. It was sort of like why go under the knife and risk some major recovery problems if your current therapy is working?

She said that it would still be subjective as to whether I was truly stage 3 or stage 4 at the time of diagnosis, because no biopsy was done of the chest wall/clavicle lymph nodes to determine malignancy or not. It was based on the PET scan with no definitive biopsy of that questionable chest wall area. She still leans with stage 4. Having heard all this information, I was convinced that no surgery at this point in time based on what she stated was the best option. She said surgery was NOT completely off the table, it could happen at a later date, if my circumstances changed. I'm comfortable with that. I am still a stage 4, I'm still being geared towards palliative care but with the excellent results of my targeted therapies so far, I'm thinking I can look forward to having a couple more years or more......Some people live for much longer periods of time with a stage 4 diagnosis. It's back to see the oncologist for his take on her information in two weeks time.

After my first infusion of just immunotherapy drugs: I continue to receive Herceptin and perjeta, which continue to cause me to swing between normal and diarrhea. I never know when it's going to hit. I can go for three to four days and then WHAM.  

I found out that the Chicago doctor, Dr. Fan, recommended an oral chemo pill, Ibrance, as it is commonly known. I'm not too happy about that...hair loss would continue, and the pill is taken daily for 21 days, then 7 days off. I would have to take this pill indefinitely. It's expensive....$17,585.00 for 21 pills WITHOUT insurance. I can't even think about how much it's going to cost me out of my own pocket with insurance, but will have to find out soon. I have that 2,000.00 deductible to meet first for prescriptions. Once you start this medication, they have to draw blood every ten days for an indeterminate amount of time to make sure your white cell counts don't bottom out. In addition, there are plenty of nasty side effects that are almost as bad as chemo. Great.

I have since found out, I could get a grant to pay for the meds at zero cost to me for one year. That helps a LOT, but the main question is, do I want to take it? there are so many BAD side effects of this med, palbociclid, that I don't want to take it.

I'm very upset about having to take the oral chemo pill and think I will wait until my first after chemo PET scan in July before starting it, IF I do. I'm on a hormone blocker now, Anastrozole, which is making my blood pressure sky high, in the 170's for the upper number, and thinning my bones. So tired of all these side effects and trying to balance them out with other medications. Life is getting harder as a cancer patient but I was hoping for a break in there somewhere,

I have been continuing to sub, and surprisingly have gotten a few days right at the end of the school year. At my last job, the kids asked me at the end of the day if they could see me without my hat. So I obliged, and we had a quick discussion about hair loss, people who CHOOSE to shave their heads, and about cancer. The kids' reactions were what I thought they would be....The girls were sympathetic, "Awwwww...." and gave me hugs, one boy said, "EW!" and promptly was chastized by the others for making a "mean" comment. I didn't mind...it helps me sometimes to explain what's going on with me, IF the kids ask, I tell them just a little bit. They are very understanding and sweet. I love that.

That's my life right now....Thank you for reading and following my journey!