Looking this post over later, I realize that this one is really not for reading by others -- DON'T READ IT, REALLY -- its a super tedious account of the facts about my treatment. This was an attempt to feel IN CONTROL of this wild ride, on my part. BUT DO ENJOY THE PURPLE HAIR!
Seems like a good time for an update, as I'm about to begin (tomorrow) the 3rd of what I envision as 5 (partly overlapping) steps of treatment for my breast cancer. I say "my" breast cancer, because every cancer is different and needs different treatments. I numbered the 5 steps according to their ending dates, because for each piece, my mantra is "Get it behind me!"
1. Triple chemo (2 nasty, traditional +1 targeted/Herceptin), 6 tx, Oct 2010 to Feb 22, 2011 - DONE!
2. Surgery - lumpectomy, removal/biopsy of sentinel lymph nodes, bilateral plastic surgery, April 7, 2010 - DONE!
3. Radiation: 6 weeks, every weekday from June 6 to July 14, 2011
4. Herceptin chemo resumes: 12 more treatments, every 3 weeks, from May 24, 2010 to Jan 10th, 2012
5. Tamoxifen, a daily pill to take for 5 years, which blocks the effects of estrogen, from Summer 2010 to Summer 2016
So, how am I doing so far?
Completed steps 1 and 2!
I expect these to be the toughest to get through, so I'm very happy to "get them behind me." I am even more happy with the great response to these treatments that I've had!! It is almost 15 weeks since completion of step 1, and I had the extreme fortune to have "a complete pathological response," which is the best one might hope for! In other words, the neoadjuvant therapy (meaning chemo before surgery) completely irradicated my lump, as far as all tests and imaging could see. (It didn't/can't affect the small calcifications, but those were removed in surgery.)
Read more here about what that prognosticates: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2364175/ The main take-away from the article for me personally is that I am one of the 15% who have a complete pathologic response from chemo, and this means that predicted long term survival for me is much better than for others. Since I had no cancer in the axillary lymph nodes, this again puts me in the best class for survival.
My medial oncologist told me that in my category, there is only a 4% rate of death in the next 5 years, if I complete the entire course of treatment (my 5 steps). Even better, this includes people who are not fully compliant with treatment, so if I do everything as my docs tell me, then I am even more likely to have no recurrence. And of course I'm continuing to make lifestyle choices (exercise, nutrition, supplements with demonstrated efficacy) to help eliminate and prevent cancer.
Of course, the after/side effects of the chemo are still present, but better week by week. My finger nails, which had lifted and broken off most of the way down, are now about half grown back. My hair is about 1/2 inch long, which is a huge improvement from white baldness. My energy is much better, about 85%, my chemobrain has mostly bounced back (as well as I can judge), and the feeling that I just drank a bottle of Draino has largely faded, with a few twinges at times in the back of my throat to remind me of what I've been through.
From the surgery, there is still incision pain, and they say it takes 18 months to heal. I do have anxiety about how the radiation will affect the healing. Studies show that Vitamin E, aloe, etc. do not in fact help, though I thank my friends who gift me with such things. Massage of the incision is recommended by my surgeon, and while rather painful, does seem to increase healing. On the up side -- very up! -- the surgery was completely successful, medically. They were able to remove what they needed to, with clear margins. The sentinel lymph nodes (4 of them) were removed and biopsied, with no cancer found! And, as a nice bonus, my plastic surgeon did a remarkable job, and the aesthetics are wonderful. Each of the many doctors and nurses who have seen have been very impressed and asked who the plastic surgeon was. He and his nurse have told me that I am an amazing healer, and they are super happy with the results. They invited me to be a part of the breast survivors fashion show in September, which apparently is a very big event. That gives me a nice thing to look forward to!
Steps 3 and 4 are just beginning. Step 5 will begin this summer.
Step 3 is Radiation for 6 weeks, every weekday from June 6th to July 14th, 2011, meaning 30 trips, $750 in gas, and 90 to 120 hours of driving. I was wondering why I need the radiation, since the cancer seems to be gone? And everything around it was cut out? The answer is to prevent its recurrence. In this study, http://www.breastcancer.org/risk/new_research/20110502.jsp they calculated that 30% of the women diagnosed with DCIS (my kind of breast cancer) who were treated only with surgery would have a recurrence in the 10 years after surgery and 18% of the women treated with surgery and radiation therapy would have a recurrence. So it's worth it, apparently.
But side effects are to increase other cancer risks, to destroy a small part of my lung, to damage the irradiated tissue permanently, to inhibit healing and incease scarring from the surgery. And to temporarily burn the skin, and to make me tired for up to a year.
Step 4 is that Herceptin chemo resumes: 12 more treatments lasting about 2 hours, every 3 weeks, from May 24, 2010 to Jan 10, 2012. The main side effect is damage to my heart. They monitor me with echocardiograms, and if the heart is too damaged, they stop the herceptin until I recover. The thing not mentioned, but that I'm struggling with is that it seems to be making my blood pressure sky high. My family medicine doc has increased my meds, and I'm going to see her again soon, but my home monitoring is showing very high readings, consistently, now that I've restarted the herceptin. Dying of a stroke while going through all the rest of this would be a nasty irony!
So I'm looking at everything I can to reduce my BP. In the past, I've noticed that exercise does, even faster than helping with weight loss, reduce my BP. One of the meds we tried made me bloat up 10 lbs, and it didn't seem to help the BP: carvedilol. I went off it and lost the 10 lbs. My other doc said I have to meditate, lie down, what ever it takes to de-stress and get the BP down. I'm trying, but I just took a reading this morning, thinking I was quite calm, and it was 183/93. Not ok.
Step 5 will be to take Tamoxifen, a daily pill that blocks the effects of estrogen, from Summer 2010 to Summer 2016. http://www.cancer.gov/cancertopics/factsheet/Therapy/tamoxifen
It is indicated for anyone whose cancer is estrogen positive of at least 1% -- mine is 95% positive!!! Meaning it is very sensitive to estrogen, in making it grow. So it is recommended for me, even though it increases my risk of uterine cancer, blood clots, strokes, cataracts, and other things. And of course, there is the rather upsetting fact that it puts me into full on menopause.
My current outlook:
All together, my hopes are that I will get through the rest of these things, that the cancer will not recur, that no other illnesses are created in me as a biproduct of treatment, and that I will adapt to the unpleasant things that are unavoidable consequences. I am in the best category for survival, but there is no absolute cure. Survival rates are improving all the time, and that is why my oncologist gave me an even better number than that in the study I shared with you. This is an unexpectedly long, long process, but I do feel that the worst things to undergo are behind me now. I of course remain concerned about the effects of the three remaining steps of my treatment, and I truly hope to be able to progress on my professional goals, and to do those things that will make me most healthy now and longer term. I try to not demand too much of myself, to just get through this and heal, but I really want to exercise and bring my weight and stress and blood pressure (and pre-diabetes) into better shape as well. It's a balancing act, as I try to also be a good mom and wife, friend and family member.
Love to all, and sorry for the lengthiness!
PS Maybe Jenna or Isy will come up with better cancer treatments someday!