Wednesday, July 22, 2015

After surgery- again

I had the lymph node removed about 12 hours ago and have been asleep since right before that. They got an initial report of no cancer in the lymph node!!!!!!!!! Excellent news. They will now slice the node into many thin sections and look for any stray malignant cells. It may be early next week before I hear from that. I am so relieved!

Tuesday, July 21, 2015


Someone who read my blog told me they tried to comment and weren't successful at doing so. Being new to this I am slowly figuring out how things work. I think I have been successful in making it possible for anyone to comment now. Please feel free to do so if you would like to.

Middle of the night musings...

I got the lymph node biopsy scheduled for July 22nd (tomorrow). I saw the other doctors after my last post.
The radiation oncologist agreed with the oncologist that I should have chemo since my cancer was triple negative. I finally remembered where I had read that because my type of cancer was "apocrine" in nature, it was different than the regular triple negative type. It was an article I found months ago when I first began my research. It was on the website for Johns Hopkins- a very reputable source. It said apocrine cancers are always triple negative but are less likely to recur or metastasize. Because they are so rare (<2% of breast cancers) no studies to prove this have been done.
I dropped off a copy of the article at the office of the radiation oncologist and took it with me to see my gynecologist. The gynecologist has been my doctor for 20 years and is also my favorite obstetrician. We have been at many births together and have a good relationship. He will often come to the births of my doula clients even when he is not on call. He is the most supportive doctor of natural childbirth in Rome. This is probably because all of his children were born naturally. He was completely unaware of the information I shared with him about apocrine cancer and completely supportive of my decision to forego chemo if the lymph node biopsy is negative.
I feel fortunate to have the relationships I have with my personal doctors and to have their support as I face these many decisions.
My daughter and grandson are here with me and have been a nice distraction as I wait for this test. My sleep has been wonky since I have slept with my grandson the last 3 nights. He has not needed attention in the night but has been restless, and I naturally went back into "mother mode" where I sleep very lightly and wake up whenever he stirs. Yesterday I took a 2 1/2 hour nap with him which further messed me up- hence I am awake now at 3:45 in the morning. After my surgery I will probably sleep around the clock so maybe I can then get back to some normal schedule.
I have been obsessing over these decisions incessantly. I will be so happy when cancer treatment is not at the forefront of my mind. One day I feel confident that I need no further treatment, the next day I envision having chemo and radiation. I just can't wrap my mind around the latter plan. I have always thought chemo and radiation were not logical treatments. They both can cause cancer and both impair the body's immune system. It has never made sense to me to poison the body to treat disease. I am just not sure I can do that. I really feel that if my lymph node is negative there is very little chance the cancer left the breast before being removed. I also think I have many tools now to know if it comes back in either breast before it would even be detectable by mammogram.
I am so very fortunate to have a husband who is supportive of me and any decisions I make concerning my health. He has always respected my need to understand what is going on in my body and plan a course of action I feel good about. This would be so much harder without that support.

Friday, July 10, 2015

Saga continues

I met with an oncologist early this week. She outlined the chemotherapy regimen she recommends for me. It isn't enticing. If I had a different kind of cancer there would be newer "targeted" drugs they could give. Since I have this weird triple negative kind of cancer, all they can offer me is the older more toxic drugs they have given for decades. These are the ones that have the nasty side effects; hair loss, nausea, fatigue, etc... Since my appointment with her I have also found that the more toxic of the two also increases the likelihood I will develop a lethal type of leukemia within 10 years of taking the chemo. I could also have lasting side effects like foggy thinking (chemo brain),  neuropathy, pain, skin problems, etc...
I found an article in a reputable oncology journal that says over treatment with chemo for early stage breast cancers likely causes more harm than good. Treating with chemo as an adjuvant therapy is controversial to say the least.
The oncologist said I needed to have the lymph node biopsy- she would recommend more treatments if the node was positive. If it is negative she would only want to give 4 treatments 3 weeks apart.
I decided to consult my general practitioner, a D.O. that I like and respect a lot. She also encouraged me to have the lymph node biopsy, but for a very different reason. If the lymph node is negative we agreed there is very little chance the cancer had left the breast. If there is little chance of that, then I think it is a case of overkill to have chemo- I feel the risks outweigh the likelihood of benefit.
The oncologist told me her recommendation is based on numerous studies that have shown the prognosis for women with my type of cancer is more favorable when chemo is given after surgery and before radiation. I wonder how they can know which of those women who survived with the chemo would not have survived without it. What if their cancer was completely eradicated with the surgery and they never really needed the treatment at all? Cause and effect seems impossible to predict to me. There are too many other factors that could affect the outcomes like; family history, diet and lifestyle, emotional support, etc...
I am going to see a radiation oncologist this week as well as my gynecologist, another doctor I like, respect, and have a long history with. I plan to gather as much information as I can, ask opinions from my personal doctors who know me, and hope the best course for me will be revealed.
I am also trying to reach my surgeon to get the lymph node biopsy scheduled and done. I hate to have another surgery but I feel like my decisions will be easier to make when I know that piece of information.
Thank you to all of you who have sent prayers and messages of support. It is wonderful to have caring family and friends.