Doing So Well
After He Said Cancer | A Memoir
“Your lab work looks excellent, and you seem to be tolerating the chemotherapy. You are doing so well. It’s impressive,” his breast cancer doctor said.
“Well…I’m doing my best and some days are worse than others,” my husband said trying to minimize the idea that he was doing well. He was superstitious. A glowing pronouncement of his health was sure to be proven wrong shortly afterwards.
Chemotherapy was normally administered every three weeks. It was recommended that my husband go on a “dose-dense” regimen that was given every two weeks. Getting chemotherapy more frequently was linked to better survival for people like my husband with advanced cancer. The idea was that decreasing the time between chemotherapy cycles would give the cancer less time to grow back in between the treatments.
This was a battle between the drugs and the little cancerous cells inside his body. Could the drugs kill the cancer cells before they could move to spread to other organs in his body? And would a shorter time between the treatments help to kill any remaining cells? We hoped so.
His symptoms would be worse on the dose-dense regimen, they said. His body would hardly have a chance to recover before the next round of chemotherapy. It would be grueling, but ultimately worth it from the standpoint of his survival.
Yet, he seemed to be doing quite well after that first chemo week. He seemed to bounce back very quickly. After the first week, he was back to swimming in the pool or getting on the exercise bike.
“So far, so good”, he said. “But the effects are cumulative, right?” We were both worried that each infusion of chemotherapy would be the one to really knock him out and put him in bed for a week. With two young girls, a heavy activity schedule, and my job – the idea that Chris would be out of commission for a full two weeks was scary. Not just for his health, but for the impact and stress on our family.
“Most people aren’t doing as well as you are six weeks into chemotherapy. You really are doing great,” she said.
This pronouncement didn’t make me happy. My husband looked uncomfortable again. The thought had crossed our minds that his mild symptoms might mean that the chemotherapy wasn’t working. Or that they weren’t giving him enough drug. I also wondered if the regimen they had constructed based on outcomes for women’s breast cancer just wouldn’t work for his cancer.
Neither one of us felt optimistic at this point. We had no idea how this would turn out. It was too early in the journey to celebrate. It was simply one foot in front of the other and hope for the best. He just wanted to get through it, and I needed help with my grief.
“Do you have any questions?” the breast cancer doctor asked. She always asked us this at the beginning and the end of the visit.
My husband and I looked at each other and shook our heads, which was also predictable. He truly didn’t have any questions. I had questions but couldn’t find my voice to ask them. Why didn’t I ask them? Just say what you are thinking!
Although the type of breast cancer that men typically develop is thought to be a less aggressive type, their survival in most studies was worse than women when comparing groups with the same cancer stage. There must be something different about the way that breast cancer grows in men that is different than women, I thought. And how it responds to the treatment. Yet, the oncologists were recommending the same treatment regimen for men with breast cancer as they did for women.
I had been reading some scientific studies to better understand his disease. Breast cancer can be split up into subgroups based on differences in their tumor and hormone markers. One study found that within a single breast cancer subgroup, men and women had different DNA and RNA profiles.1 These are the instructions that tell a cell which proteins to produce. Several studies have found key genetic differences between male and female breast cancer.2,3 Male and female breast cancers were definitely different and treatments weren’t targeting what was unique about the cancer in men.
Take for example the estrogen receptors that live on the cell surface of breast cancers in most men and many women. A study found that some men with aggressive breast cancer had estrogen receptors on their breast cancer cells, but the estrogen pathway inside the cell wasn’t functioning properly.4 This could mean that tamoxifen, a drug blocking estrogen, might not be effective in keeping the breast cancer from coming back. Could some men with breast cancer benefit more from drugs that block androgen (e.g., testosterone) receptors, which are also present on their cancer cells?5 It was a valid question and was being studied in the early phases of research.6
But the plan was already in place to put my husband on tamoxifen when he finished his chemotherapy and radiation. His tumor was known to have estrogen receptors on their cell surface, but no one could tell us if his cells would respond to tamoxifen to help shut the cancer down. Although technology was available to figure out whether his cells might respond to tamoxifen, it would be too expensive and time-consuming to do this in a single case. It was easier to put him on the drug and hope and pray for the best.
“I have a question,” I asked, finding my voice. “Are there any clinical trials that he can join to better understand how breast cancer in men might differ from that in women?” A clinical trial was the right way to figure out how his tumor might respond to the treatments, I thought. If researchers could learn more, then they would be able to figure out which men would benefit from which type of treatment.
“Not at this point, and there are very few clinical trials enrolling men,” she said. “There are just too few men with breast cancer. But we will keep him in mind for new trials as they come up.”
I wanted a better answer than this. There were hundreds of ongoing clinical trials for breast cancer.
We will look into it, would have been acceptable. Or, I don’t know but I will ask my nurse to search for clinical trials that he might be able to participate in. There was a factory of nurses and support staff at this cancer center! Surely, someone could help us find a clinical trial that he could participate in.
As usual, my husband thanked the cancer team for their time. He was grateful for their care and a kind human being. We rose to leave and I reached for his hand. I was not satisfied. I could have asked more questions but didn’t have the strength.
A familiar feeling of disappointment and dread began to wash over me. So many unknowns for my husband and our little family.
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References
1. Johansson I, Killander F, Linderholm B, Hedenfalk I. Molecular profiling of male breast cancer - lost in translation? Int J Biochem Cell Biol. 2014 Aug;53:526-35. doi: 10.1016/j.biocel.2014.05.007. Epub 2014 May 16. PMID: 24842109. https://pubmed.ncbi.nlm.nih.gov/24842109/
2. Piscuoglio S, Ng CK, Murray MP, Guerini-Rocco E, Martelotto LG, Geyer FC, Bidard FC, Berman S, Fusco N, Sakr RA, Eberle CA, De Mattos-Arruda L, Macedo GS, Akram M, Baslan T, Hicks JB, King TA, Brogi E, Norton L, Weigelt B, Hudis CA, Reis-Filho JS. The Genomic Landscape of Male Breast Cancers. Clin Cancer Res. 2016 Aug 15;22(16):4045-56. doi: 10.1158/1078-0432.CCR-15-2840. Epub 2016 Mar 9. PMID: 26960396; PMCID: PMC4987160. https://pubmed.ncbi.nlm.nih.gov/26960396/
3. Chatterji S, Krzoska E, Thoroughgood CW, Saganty J, Liu P, Elsberger B, Abu-Eid R, Speirs V. Defining genomic, transcriptomic, proteomic, epigenetic, and phenotypic biomarkers with prognostic capability in male breast cancer: a systematic review. Lancet Oncol. 2023 Feb;24(2):e74-e85. doi: 10.1016/S1470-2045(22)00633-7. PMID: 36725152.
4. Johansson I, Killander F, Linderholm B, Hedenfalk I. Molecular profiling of male breast cancer - lost in translation? Int J Biochem Cell Biol. 2014 Aug;53:526-35. doi: 10.1016/j.biocel.2014.05.007. Epub 2014 May 16. PMID: 24842109. https://pubmed.ncbi.nlm.nih.gov/24842109/
5. Weber-Chappuis K, Bieri-Burger S, Hurlimann J. Comparison of prognostic markers detected by immunohistochemistry in male and female breast carcinomas. Eur J Cancer. 1996 Sep;32A(10):1686-92. doi: 10.1016/0959-8049(96)00154-2. PMID: 8983275. https://pubmed.ncbi.nlm.nih.gov/8983275/
6. Caligiuri M, Williams GL, Castro J, Battalagine L, Wilker E, Yao L, Schiller S, Toms A, Li P, Pardo E, Graves B, Azofeifa J, Chicas A, Herbertz T, Lai M, Basken J, Wood KW, Xu Q, Guichard SM. FT-6876, a Potent and Selective Inhibitor of CBP/p300, is Active in Preclinical Models of Androgen Receptor-Positive Breast Cancer. Target Oncol. 2023 Mar;18(2):269-285. doi: 10.1007/s11523-023-00949-7. Epub 2023 Feb 24. PMID: 36826464; PMCID: PMC10042772. https://pubmed.ncbi.nlm.nih.gov/36826464/
I re-live every step of our journey as I am reading through your story. So many similar feelings and questions. The thought of even asking about a clinical trial did not come to mind for us. I don’t think I was even aware that something like that might be an option. There definitely needs to be more answers for our men with breast cancer.
I, too, know intimately what this kind of moment in the process of treating cancer is like. Your continued efforts to find help in a clinical trial is worth it. Keep searching. You are in a better position than most anyone to understand that there is more to know about how breast cancer must work differently in men than in women. Ironically, the shoe is on the other foot here re the historically poor research data on how women are different in all kinds of diseases.
But, meanwhile, for what it’s worth and in response to “I needed help with my grief.”... It brought to mind your recent post “How We Got Our Mornings Back”. I’m struck at the similarity of that stomach dropping feeling when we dare to make the best move we know of and experience the subsequent fear that something bad might happen. Letting children directly experience the real-world consequences of irresponsibility for getting to school on time is surely a lower stakes risk than the life and death situation of cancer. They don’t compare.
Or do they? One is a lesser version, but the human emotion involved is quite parallel. Circumstantial ingredients in both: Acting in love and care with the best resources available with an acknowledged lack of experience and incomplete information. Awareness that the outcomes could be excellent OR terrible. Disruption of most familiar and habitual orders. Emotional consequences in both: Having to abide uncertainty in an unnerving way. Battling trust and mistrust of self in judgment and decision making. Desperation for not KNOWING. Fear.
So, perhaps, the lesser trial you have already survived will have a gift for you for this moment too.
There is a place at a higher, more inexplicable level where, after we have done all that is possible and, resting in knowing we have done this, we can only continue breathing while what is beyond us takes over from there. Here, beyond mere words, we can only let our hearts speak. And wait for Grace.