10 May 2023
Michel and I met with the Holy Cross Medical Group – Oncology team today. We saw, one at a time, Kathleen McTauge, the oncology nurse and office coordinator; Jessica Burgers the oncology surgeon; Alexandria Diego, genetics nurse; Karim Arnaout, hematology oncologist; Phil Fusca, oncology social worker; and Vivek Patel, radiation oncologist. It was a full morning with the addition of blood draws for genetic testing and additional blood work.
Both Michel and I were impressed with the members of the team and how they handled themselves and how they explained everything in detail to make sure we understood what was being said and what the options are.
Dr. Burgers first came in with news. The fluorescence in situ hybridization (FISH) test came back positive for HER2 (human epidermal growth factor receptor 2). HER2 is a gene that produces a protein on the surface of all breast cells. Sometimes, the HER2 mutates. When that happens, too much of the surface protein is produced and this makes cells grow too fast and divide too fast (the very definition of cancer).
I am HER2 positive which means my cancer grows faster than other types of cancers and therefore may spread faster. That’s the bad news. The good news is there are several drugs available that recognize the protein receptors and target them specifically. In a word, HER2 positive means my cancer cells respond well to chemotherapy.
You might know me, I’m a little peculiar. The cutoff point for decision of treatment for HER2 positive patients is if the tumor is greater than 2 cm in size. My tumor is pretty much dead on 2 cm. Most of the data of chemotherapy on HER2 proteins are based on women’s breast cancer. However, most oncologists think that the positive results of chemotherapy associated with HER2 proteins (greater than 50%) will also apply to males. Age also makes a difference. My age is against me but my physical condition is a mark in my favor.
The question for the oncology team is whether to go ahead with the mastectomy on 23 May and then do chemotherapy and/or radiation depending what is found in the sentinel lymph nodes during surgery or to do chemotherapy first to shrink the tumor and then surgically remove any tumor left after chemotherapy. They called me this afternoon and the oncology team agreed on chemo first.
As I undergo chemotherapy first, they will look for the response. A pathologically complete response would give ideas as to additional therapies that may be applied. An incomplete response opens me up to newer drugs for treatment.
The other good news is that the drugs that are used for HER2 proteins work very well on any cells found in the sentinel lymph nodes which means they may not have to remove a significantly larger portion of my breast and axillae area (under arm).
If surgery is required, it will be 3-5 months later, I’ll certainly be on tamoxifen for at least five years.
Alexandria Diego was next to counsel me on the benefits of genetic testing. The company they use accepts Medicare and so it should not cost me anything. She informed up that 5-10% of all cancers are genetically based and they test for 84 cancer causing genes. There are three possible outcomes of the genetics test: negative, positive, or variance of uncertain significance. The negative and positive are self explanatory. The third category is when there is a change in the gene but it is unknown what the change means.
The genetics test is by the Invitae company and it an RNA and hereditary cancer blood test. They did that later in the morning. It’ll take 5-10 days for some of the results to come back and 6-8 weeks for others.
Many of you have heard of the BRCA gene. There are actually two: BRCA1 and BRCA2. If these are positive then it may pay to get a double mastectomy. However both Dr. Burgers and Dr. Arnaout indicated data did not support a double mastectomy.
Next up was Phil Fusca, oncological social worker. He went over several support organizations for breast cancer both nationally and locally. There is a great likelihood that I will be recommended for home health care for wound care. He explained there are two categories of home care: skillable and custodial. Skillable is something that improves your condition (changing the dressing of the surgery) whereas custodial would be like bathing, cooking, and cleaning. Medicare pays for skillable and does not for custodial.
Dr. Arnaout, medical oncologist gave me an exam and then spent time dealing with the chemo first option. The treatment before surgery includes (1) blood work (2) echocardiogram and (3) placing a port into the chest for infusions.
During chemo, they will infuse me with four drugs (TCHP) all through the port: Taxotere, Carboplatin, Herceptin and Pertuzumab. These are apparently pretty powerful and pretty toxic. I can expect fatigue, nausea, vomiting, diarrhea, pancytopenia (lowered red and white blood cells – 24 hours after each infusion I have to return to boost my white blood cells), risk of infection, cardiac side effects, hair loss (ha!) neuropathy and infusion reaction. These are very nasty drugs but they seem to have a real good effect on HER2 surface proteins.
I’ve always been concerned with having to undergo chemo because of the side effects. Katherine, when she informed me of the decision today, told me they have many ways to negate the side effects, particularly the vomiting and nausea. The biggest complaint is lack of energy or fatigue.
There will be one infusion of the four drugs every 3 weeks for 6 sessions. My math seems to come up with 18 weeks or almost five months. That would put my surgery off until around either the end of October or the beginning of November (happy birthday to me). Then I would continue to be infused with the four drugs every three weeks for 1 year. After that, I would be on tamoxifen for five years.
To facilitate the chemo, they’ll put in a venous port in my chest so I don’t have to have needle sticks every time. They’ve already scheduled the port placement on the 25th of May after I return from my trip. The first chemo session will last 4-5 hours. I’ll probably need someone to drop me off and then pick me up after the first chemo session because they’ll give me Benadryl to negate some of the effects of chemo. They do the infusion slowly at first in case I have allergic reactions to the drugs. After that, it’ll be 2-3 hours per infusion and I should be able to drive myself to and from.
Katherine is scheduling my echocardiogram to make sure my heart can take the therapy and then she’ll schedule a meeting with Dr. Arnaout’s nurse to go over “chemo education.”
Dr. Patel, the radiologist was last and the briefest consultation because the course of treatment (or lack of treatment) by radiation depends on the outcome of the surgery and the survey of the sentinel lymph nodes. He did go over some of the side effects of radiation which may include skin change, possible burn area around the breast and shortness of breath.
The only team member we did not see today was the dietitian. She was out but I was handed a packet of information. That was the second of two packets of materials for light reading I have to do.
I really appreciate all the support shown. Friends have been more than eager to volunteer to help me in any way possible. I don’t know what the outcome will be but knowing there are people out there who care about me gives me the confidence to go through this.
The team will call me as soon as they decide a treatment option – surgery first or surgery second to chemo. I’ll keep you posted.