Decisions, Decisions, Decisions - Ugh
In my last post I covered my surgery - a bilateral (double) mastectomy which I call a quadruple mastectomy because it included the axillary ectopic breast tissue in each armpit. My recovery went smoothly and I regained strength every day, and I continue to work on range of motion. Many areas are still numb, and may be for a long time.
Now on to the "Treatment" phase. Dr. Ulloth had recommended radiation because there were so many (4) tumors in my right breast and the lymph node with a spot that had broken open was on the right side. On June 13 I met with my radiation oncologist, Dr. Christine Cha. It turned out she was very familiar with me because she was on the Breast Board when Dr. Ulloth presented my case. She very methodically went over all the reasons why I would benefit from having the radiation treatment on the right side, and that it would not affect my heart. There would be 25 sessions scheduled five days a week for five weeks. The actual radiation would only be about a minute, with getting ready and getting back dressed would make it about 15 minutes. This, of course, would take place after chemo, if I would be having that.
For all of our doctors' appointments we have been taking our good friend Melanie to act as a "scribe." There is just too much information contained in the discussions to be able to try to take notes ourselves. I always go into an appointment with a list of questions. She makes sure we have covered all of those, but there are many other things in the rapid conversations with the doctor that could get forgotten or miss-remembered if it wasn't for her excellent notes. I highly recommend taking a scribe with you if you are having these kinds of doctor's appointments.
On June 21 we met with my medical oncologist, Dr. Anupama Kurup Acheson. She was delightful and full of all kinds of information. She will manage several stages of treatment, chemo if I have it and the hormone treatment for years. Eventually we got to the results of that Oncotype DX test that would determine the need for chemo or not. As I had dreaded, the results were not clean. My score came in at 27 on a scale to 50. Right in the middle. UGH! Now I would have to make a decision. The risk of reoccurrence was 16% when only using the hormone suppressing medication like tamoxifen or aromatase. It would to down to 13% if I did chemotherapy.
Making this decision would be hard, but when I learned what would be involved it didn't sound so horrible. There would be only two chemicals that would not affect my heart. There would be only four infusion sessions three weeks apart. I would get all kinds of anti-nausea meds, and one of the main side effects would be fatigue. I should be able to feel pretty good for half the time between session. Since the outcome of this test was what I had been dreading, having to make the decision, I had already done the worrying. If it will increase my odds of long term survival, I was willing to go for it. Paul, Melanie and I talked about it. The last question I had for Dr. Acheson was "What would you recommend your mother do if she was in my position." Her response was "Try it at least once." That gave me the feeling that there would be an out if needed. I appreciated that response. Also, when I told her I had gone from "Interesting" to "Complicated" and was going to use the word "Complex" for this next stage, she looked me straight in the eye and said, "You are a very nice person, but you aren't that special. You are right there with what we do every day." I guess that was quite a relief as well.
On the way out I scheduled the first three sessions and then was shown the infusion room where I would come four times. There were comfortable recliners and a snack area with lots of things to eat and drink. I could have someone with me and bring in food and my own entertainment. Doable.
Once home, I read through the chemo section of the books I've been using as references:
Just Get Me Through This! A Practical Guide to Coping with Breast Cancer by Deborah A. Cohen and Robert M. Gelfand, MD and
Dr Susan Love's Breast Book by Susan M. Love, MD, Sixth Edition 2015.
Of course I had many more questions, and called the doctor's office to get them answered. The triage nurse, Holly, called me back and spent time answering them all. Then she put me in touch with the nurse navigator, Julie. She was very helpful and had lots more information and tips. I'm feeling much better about the decision.
So, I'm set for the next phase of my recovery; chemotherapy. My infusion dates will be June 28, July 19, August 9 and 30. Radiation will follow after a few weeks recovery.
In the mean time, since I have chosen to not do reconstruction, I need to so something to make me still look a bit more feminine. My friend Melanie and I went "Boob and Bra" shopping the other day. I will eventually find just the right combination and the sales lady was an excellent fitter. She has ordered some things that should work perfectly for me.
All of this goes together with my theme or motto that I want to look back, in the future and say I have "No Regrets." It turns out that my favorite aria sung by Edith Piaf is "No Regrets."
Listen to this beautiful auria. English Version
Surgeries, Pathology and Recovery
My last post left off with my surgery scheduled for May 10, 2017. It was to be a double mastectomy and also removal of the ectopic breast tissue on both sides. The afternoon before surgery I went to the hospital to have the dye injected into both breasts which would allow the lymph nodes' locations to show up during surgery.
May 10 I checked in at St. Vincent Hospital at 5:00 am and it wasn't long before I was taken back to the "Short Stay" surgery area and given a small room just large enough for the bed and a chair. There were many things done to prep me for surgery. I was also visited by the anesthesiologist, Dr. Ghode and by my surgeon, Dr. Ulloth. We discussed what she would be doing during surgery and she then had me sit up so she could use her permanent marker pen to draw the areas where she would make incisions and the sections she would be removing.
At 7:30 am I was wheeled out to surgery. It took about 5 1//2 hours and at that time, while I was in recovery, Dr. Ulloth went out to tell Paul (and Alberto who had come to sit with Paul) that all had gone well and the lymph nodes were negative. That was a huge sigh of relief. It did not take long before I was out of recovery and back to the small room where I would spend the night. I tolerated the anesthesia and the pain meds I was receiving and did not get sick at any time. This sped up my recovery and I felt lucid and conversational very quickly. Because I had been advised not to be a hero, I took the pain medications when they were offered, which included both oxicodone and Tylonol every three to four hours. The night went well and I slept, using my own CPAP machine.
The second day I enjoyed breakfast and lunch while waiting for the doctor to come by in the early afternoon and give approve my discharge. Back home I went directly upstairs to our family room where the big leather recliner is located. This would be my "bed" for some time to come, until I can use my arms well enough and can sleep on my side. I continued on the heavy medication regiment for almost a week.
Six days after surgery, May 16, I saw Dr. Ulloth to have the bandages removed and the drain tubes taken out. Since the pathology report had not yet been posted, she made phone calls and talked to the pathologist. That is when I went from "Interesting" to "Complicated." That word kept coming into the conversation. It turned out that the one lymph node she had removed on my right side had in fact a malignant spot on it, which had broken open. At that time we all agreed that she had to go back in to get more nodes to make sure nothing had spread farther down the line. The next surgery was scheduled for the following Wednesday, May 24 when she would go back in through the same incision in my right armpit.
Surgery number 2 took place May 24, again in the first time slot of 7:30 am. For this one, my friend, Melanie, was back in town to be with Paul. I was only in surgery a little over an hour and it went well, again. By noon I was in the car and we were heading home. This time I only took a few heavy pain meds for a couple of days, then Tylenol for a couple more. Through all of this, the only parts that hurt were the incisions across my armpits. The original one on my left side continues to bother the most. I was assured that with time that would improve.
When I had the single drain tube from the second surgery taken out during an office visit on May 30, the pathology report had not been finished on those last nodes. Everything else was looking good. I made my final visit appointment for June 5. After she had inspected everything and removed the last lingering seri-strips Paul finally asked the big question. What was the result of the pathology report. ALL OF THE NODES HAD BEEN NEGATIVE!!! There was an audible sigh of relief from all of us.
One last test was ordered. It is the Oncotype DX test which looks at 21 different possible gene mutations for my type of cancer, the Estrogen Responsive Positive, all others negative. The score from this test has a high ability to predict risk of re-occurrence and whether or not chemotherapy will be helpful or not. This test will take about two weeks.
We said a final farewell to Dr. Ulloth and wished her well on her upcoming African Safari and retirement. I have appointments made with Dr. Christine Cha, a radiation oncologist; Dr. Acheson, a medical oncologist; and Jennifer Batchelor for a physical therapy assessment.
Grace's Journey with Breast Cancer: The Beginning
From time to time, I will update you on my progress in dealing with the diagnosis and treatment of breast cancer. I'm trying out this method of keeping in touch and sharing my journey.
In February, while we were in Cuba on our second trip with Grand Circle Foundation, I discovered a lump in my armpit while washing off soap in the shower. This was of concern to me, but I didn't say anything about it at the time. It took me a little while to process the discovery and to decide what to do. Since we were staying at our place in Green Valley, AZ at the time, and not at home, it was more complicated. I finally decided I really needed to have it looked at. This proved to be a very wise decision.
I was not able to get in to see a doctor in a timely manor, so I settled for John, the nurse practitioner. I wanted to be seen by someone as soon as possible. That appointment was March 3, and he was very thorough in examining me and consulting with a doctor in the office. The recommendations, and orders, were for a chest X-Ray and an ultrasound. I got the X-Ray that afternoon, but the ultrasound could not be scheduled until they received the actual CD of my previous mammograms from Portland. Those must have been sent by snail mail because it took a week.
The ultrasound got scheduled for Friday, March 17. The lovely nurse, Lisa, who walked me through everything that day, indicated that because my last mammogram was over six months old, they wanted a new one. I opted for the 3D one even though it "might" cost me more. That was done, and the radiologist read it quickly, then only ordered an ultrasound for the lump in my armpit. After that was done, checked and redone, the person looking at those results ordered the lump to be biopsied. Again, nurse Lisa took over, got insurance permission and arranged for the scheduler to contact me that same day. She was amazing. And yes, the scheduler did contact me and the biopsy was scheduled for the following Wednesday morning, March 22, at St. Mary's Imaging Center in Tucson, next to the hospital.
The biopsy procedure was interesting as it was ultrasound guided, and the needle was "spring loaded" so it shot like an arrow into the little lump with quite a loud clicking sound. I got to watch the whole procedure on the ultrasound screen. It didn't take long, and we were soon headed back to Green Valley with instructions not to lift anything heavier than a milk carton for three days.
As an aside here, Wednesday, March 22 was the day the Multi-Media group I belong to at the Green Valley Camera Club was to set up for a major interview shoot the next day. I was the producer and director on the project, but all the guys, and gal were very helpful and did the heavy lifting for me. This involved furniture, lighting equipment, sound equipment, the green-screen backdrop and three cameras. Three hours later we were ready for the next morning. The Thursday morning interview taping went well, after setup changes, camera and sound checks, and about an hour interviewing three members of the club. Everyone pitched in to put the room back to its original condition before leaving, about 1:00.
During the above described shoot, on March 23, a message came in from John that he would like to see me at 4:00. Paul and I want to that appointment at which time he told me that the initial results of the biopsy came back positive for "invasive carcinoma with lobular features" in ectopic breast tissue. No lymph node tissue was identified. At this point I think we both just sat there for a short time to process this, then began to ask questions.
We were scheduled to leave March 25 for an Expedition Cruise to Baja, California on Lindblad's National Geographic Sea Lion for two weeks. What should we do??? John assured us that the final pathology results would take about 10 days, so by all means GO ON THE TRIP. When we got back to the house I was able to change our flights back to Portland from April 25 to April 12. On Friday, I was able to make appointments with my primary care doctor and with the surgeon I really like when a friend was using her for breast surgery. Those appointments were for the two days after our arrival back in Portland. Then, we closed up the place and left for LA and on to La Paz to join our friends on the cruise in search of marine mammals and a possible chance to pet the grey whales, again. The trip was a great diversion, and just what I needed at that time.
Back in Green Valley I saw John one more time where he reported that the pathology results were in. The lump was: Estrogen Receptor Positive, Progesterone Receptor Negative, HER-2 Negative, and Ki-67 Proliferative index was Borderline (15%). If one has to have breast cancer, this seemed like a good pathology report. but there are still too many unknowns.
We returned to Portland on April 12, and both doctors had received the test results from Arizona, and we started on the next steps to figure out what all needed to be done. The MRI had already been scheduled, so I had that on April 18th. On April 19 I met with the Genetics Counselor at Providence for an assessment of my risk factors due to extensive family history. I qualified for the testing, and some of my blood was sent off for DNA testing for nine different genetic mutations they know can lead to a high risk of breast cancer. Eventually these tests all came back negative, which was a relief, as any would have impacted my treatment.
The results of the MRI weren't so good. It showed two suspicious areas on my right breast. The lump was in my left armpit. Ugh wasn't exactly what I said at that time. In order to do a biopsy of those areas they first had to do an ultrasound to see if they could find them for doing an ultrasound-guided biopsy. Fortunately both areas could be seen, so we proceeded to the ultrasound-guided biopsies on Thursday, April 27.
Again, as a diversion, I left Friday morning for Medford to participate in our state Delta Kappa Gamma convention where I was to do a workshop on iPhone Photography. The trip was a success and my workshop was well attended. While at the Sunday brunch I looked at an email message link to "My Chart" where my doctor had posted the initial pathology report of the two right breast biopsies. They were both positive, and this calls for a bilateral (double) mastectomy. Again, I needed a little time to process this. Actually finding out then was not a bad thing as I could share the new with a few of my friends and supporters before heading home.
Monday morning, May 1, I received a phone call from my surgeon, Dr. Ulloth, while I was in Costco. She shared with me the results and we set a date for the surgery; Wednesday, May 10. I had an appointment already set to see her on Thursday, May 4 for the final discussion, questions, etc. She has me scheduled for the first time slot, so I'm to arrive at the hospital at 5:30 am for the 7:30 surgery. She also has arranged for me to go in the afternoon before for the radioactive dye to be injected into both breasts, so that the lymph nodes will be lit up and can be found during surgery.
All plans are going right along and the pre surgery interview and instructions are done. Not it is a matter of making sure the house is ready, etc. Meanwhile, I have another presentation on iPhone Photography to make to my DKG chapter Monday night.