Wednesday, April 28, 2010
No shame in my game.
A couple days ago I had a disastrous visit to the plastic surgeon.
I have one nearly A breast on the left side. After hearing about the flap & implant options from his resident, I asked about further reducing the remaining side just for symmetry.
The surgeon stormed into the room, expressed shock that I didn't just get a double mast even though ALL of my onc doctors say it isn't necessary. And then acted as if getting a left side reduction was as insane as asking to get an extra hand attached to my chest. He rolled his eyes and head without ONCE looking directly at me. He huffed, said he was going to help with measuring me and left the room. I got up, got dressed and walked out the door.
After I recovered from the shock of his rude behavior, I found I was more sure than ever about wanting to just be flat - even lopsided forever or until I find a decent surgeon.
I teach high school and have a pre-teen old daughter. She is awesome - doesn't care about my bald head or missing breast, she just wants her momma healthy. I'm not necessarily planning to show it off everyday, but if people notice, so be it. I want them all to know that woman can still look good, feel good without having to subject herself to further surgery. Reconstruction is supposed to be a choice - not a mandate. There's no shame in being just who I am.
I have one nearly A breast on the left side. After hearing about the flap & implant options from his resident, I asked about further reducing the remaining side just for symmetry.
The surgeon stormed into the room, expressed shock that I didn't just get a double mast even though ALL of my onc doctors say it isn't necessary. And then acted as if getting a left side reduction was as insane as asking to get an extra hand attached to my chest. He rolled his eyes and head without ONCE looking directly at me. He huffed, said he was going to help with measuring me and left the room. I got up, got dressed and walked out the door.
After I recovered from the shock of his rude behavior, I found I was more sure than ever about wanting to just be flat - even lopsided forever or until I find a decent surgeon.
I teach high school and have a pre-teen old daughter. She is awesome - doesn't care about my bald head or missing breast, she just wants her momma healthy. I'm not necessarily planning to show it off everyday, but if people notice, so be it. I want them all to know that woman can still look good, feel good without having to subject herself to further surgery. Reconstruction is supposed to be a choice - not a mandate. There's no shame in being just who I am.
Thursday, April 22, 2010
The Danish study - showed some survivor benefit for pre-meno women with 3 or fewer nodes. However, the average number of nodes removed was 7! So some women were maybe 2/2 positive, maybe 3 of 7 positive. So - one might surmise that there was disease in other nodes that was never detected hence the survivor benefit. The other study was Canadian - it was smaller, average nodes removed was 11.
So in my case - the possible benefit is not so clear. I had clear margins, good testing of nodes (of course it doesn't include the nodes up by my neck, sternum), but there was no visible reason to be suspicious. After chemo & with Tamoxifan - the benefit to radiation might not be worth the short/long term risks.
Apparently, I am a little unusual having grade 1, pre-menopausal and some of the other 'good' indicators, but none the less, I want to point out that in some particular situations a rad onc might NOT recommend rads.
Wednesday, April 21, 2010
RADIOPHOBIA. I admit it. I have it. Still a serious decision.
My case - 2 of 25 nodes, no lymph/angio involvement, grade 1, pre-menopausal, er/pr +, hr2 -. My other factors: Did get a mastectomy with clear margins, clear margins for the nodes, as well. I am getting chemo, and I will take tamoxifan which kills & protects against cancer cells. I am 44.
My understanding from the radiation oncologist is that I am unusual in a good way. I have heard this from my students and others. Although when referencing my personality the words "in a good way" are often followed by some apophasis. "You are weird, in a good way, except that you...dress funny...need to spank your kid...need a TV...should lighten up..."
Biologically, it is a little similiar. It is good that I'm unusual, because the unusual things are good. However, it puts me in muddy waters for making a decision. "You are unusual...in a good way... except that you...might go crazy deciding!" I think I will not go crazy. I have strategies to prevent it.
Strategies: No cancer talk after 4:30 pm, ask specific follow up questions in a timely manner, talk with my honey, family, friends, doctors and wise ones. Then, no re-hashing continue to focus on healthy eating, exercise and right mindedness.
Hodgkins, 1991 - 3A, 9cycles ABVD, no rads & ILC 2010 2b, grade 1, er/pr +, her2-, multifocal >2cm, no lymph/angio, extranodal exten - yes, right mastec, 2/25 nodes positive, 4 cycles CT, rads - not sure as of 4/21
Monday, April 19, 2010
Finding the right Docs and making decisions - revisited.
I ended up having a mast & level 1&2 axillary dissection. Now, I'm glad I went ahead and did it all without finding a less aggressive surgeon. Medical details: 2/25 nodes positive, er/pr +, her2-, grade 1, no lymph/angio involvement, extra nodal extension but clear margins all around the nodes & tumors. Turned out there were 4 FOUR! masses: 1 DCIS, 1 LCIS and 2 ILC (the trouble makers.) I can't believe there was room for all that in my nearly A, saggy little breast. The pathology described the breast overall as "unremarkable." Parting is sweet sorrow - but in opposite way than Romeo meant it. My surgeon= awesome, globe trotting surgeon extraordinaire.
I wasn't too crazy about the 1st med onc - I think she might have been a having a midlife crisis. She talked about my options for chemo or no chemo with as much weight and concern as if we were talking about whether or not I prefer cream of 2% in my coffee.
By luck, the fellow who was assigned to me when I had Hodgkin's is now at a nearby hospital. Not the same institutional authority as the big Cancer Center, but they are hooked into various research projects through Mayo. And, he is great at explaining recent research, various school of thought about the research, then giving me a personal recommendation with his reasons why. He remembered me for the bad-old days of chemo so we reminisced about hand written notes and days when vomiting began before patients even arrived for infusions. It is so pleasantly strange now - there are snacks, visitors, wireless networks, I can DRIVE myself to and from - in the bad days I could barely walk out the door without a wheel chair.
Now, I am deciding about radiation. Again, a nationally - world known rad onc. And I love her ways. Like my med onc, she reviews the research, puts it in context, applies it to me. The big difference is that the med onc has this kind of photographic-memory style of recantation whereas the rad onc tells the research like a real life story. And she's concerned about me getting pregnant. She's pleased to hear that I'm eating better, exercising. She cares about the mind-body connection.
Another long story...see next post. Bottom line is that when I asked her if she would recommend rads for me she pause and said "probably not." I have a week or so to decide.
Third Treatment
Just had the third of four chemo treatments last Thursday. I can hardly wait to be finished! Even though there are moments when I like my Avatar, the last airbender, looks, I will be happy to have hair back on my head.
The effects so far this treatment, the blechy mouth taste, digestive disruptions that are manageable, super hot flashes, a couple nights of waking up over and over again, but no straight up insomnia. Did I mention afternoon and evening fatique. Seems I need a 2-3 hour nap in the afternoon, and I'm unable to focus much on any real life conversation the rest of the evening.
Most notably, I'm almost afraid to say it....little or no joint pain! Acupuncture? Increased Tolerance? Yoga? Livestrong? Whatever it is, I'm happy about it. Whew. (I hope it doesn't show up tonight.)
The effects so far this treatment, the blechy mouth taste, digestive disruptions that are manageable, super hot flashes, a couple nights of waking up over and over again, but no straight up insomnia. Did I mention afternoon and evening fatique. Seems I need a 2-3 hour nap in the afternoon, and I'm unable to focus much on any real life conversation the rest of the evening.
Most notably, I'm almost afraid to say it....little or no joint pain! Acupuncture? Increased Tolerance? Yoga? Livestrong? Whatever it is, I'm happy about it. Whew. (I hope it doesn't show up tonight.)
Thursday, April 15, 2010
Pain update - cause and some reprieve
My husband spoke to a nurse at the hospital. Apparently, the pain in my legs is probably from the taxotere/docetaxel. I am okay to take the norco/vicodin or acetaminophen or ibuprofen. I'm getting some mild relief from taking the ibuprofen on regular basis. I'll save the norco for the evening.
And, I can still look forward to some more pain/throbbing possibly in the sternum, from the neulasta. Oh, goody. The lower extremities don't really produce a lot of marrow which is what the neulasta stimulates. That's why the taxotere is getting the blame for the serious pains.
I went to the RelaxStation for a foot massage from Grace. It was great. She used gentle pressure which was all I needed. It took my mind off the pain completely during the massage. After, the pain was still there, but lessened and with more range of movement. She also found another sore spot that I only noticed when she massaged. In refloxogy, the sore area corresponded to the digestive system. When she applied a pressure and massaged it, I could feel my stomach relax. Even though I hadn't realized it, I did have some discomfort - either from tension or the ridiculous amount of drugs I'm taking, my tummy wasn't completely happy before the foot massage.
And, I can still look forward to some more pain/throbbing possibly in the sternum, from the neulasta. Oh, goody. The lower extremities don't really produce a lot of marrow which is what the neulasta stimulates. That's why the taxotere is getting the blame for the serious pains.
I went to the RelaxStation for a foot massage from Grace. It was great. She used gentle pressure which was all I needed. It took my mind off the pain completely during the massage. After, the pain was still there, but lessened and with more range of movement. She also found another sore spot that I only noticed when she massaged. In refloxogy, the sore area corresponded to the digestive system. When she applied a pressure and massaged it, I could feel my stomach relax. Even though I hadn't realized it, I did have some discomfort - either from tension or the ridiculous amount of drugs I'm taking, my tummy wasn't completely happy before the foot massage.
Saturday, April 10, 2010
Broccoli, Brussels Sprouts, Cabbage
Despite a couple studies that seem to show that general eating of vegetables does not reduce cancer risk, I am adding specific fruits, vegetables and herbs to my diet. One group of foods that comes up over and over again is cruciferous vegetables. So I'm eating lots of coleslaw, which I love. Broccoli, I like, but am looking for new ways to sneak it in to my daily (or twice daily) diet. Here's good looking recipe for broccoli hommus.