my choice to do chemo????
But the ball is back in my court. I can 'choose' chemo if I want. I'm healthy and she says I'm an excellent candidate for chemo. I think that means I could handle the side effects, not necessarily that I would increase my life expectancy or decrease my recurrance??
I have two primary tumors, one in each breast, invasive ductal carcinoma. 1.4 cms on the left and .5 on the right. Well-differentiated, sentinal node biopsy showed 4-5 nodes on each side with no cancer. I had bilateraly mastectomies and immediate reconstruction. (Stage 1, T1N0M0)
We are going to do the Oncotype DX testing--if my score is <11, no chemo. If it's >25, chemo.
But 44% of all scores are between 11-25, and they have no guidelines in that range for whether or not chemo would help.
How on earth can I make that kind of decision?! Take chemo, feel awful, get leukemia in 15 years from the chemo, which maybe didn't even do anything?
Anyone with experience on "voluntary" chemo??
Lisa
Comments
-
Hi Lisa...
Hi Lisa, my onc left the decision about chemo completely up to me. But at the same time, he gave me the percentages of both doing it and not doing it. In my case, it was a no-brainer. Chemo increased my odds of being alive 5 years from now substantially.
So I'm afraid I can't really be of much help to you. Other than to say, if there was ANY kind of treatment available to me that had even a small chance of being any help, I would do it. But that's just me.
Wishing you all the best with your decision.
Hugs,
CR0 -
chemo
Maybe you should give it a try. I did chemo and for me it wasnt that difficult. This is the first time I ve heard that I may end up with leukemia down the road. But even knowing that, I would of still did my chemo because I want to be here for my kids. You have a hard decision. Pray on it0 -
Chemo and other treatments
Chemo and other treatments are always a choice and I would do whatever I could to reduce the risk of recurrence. My tumor was 1 cm with negative nodes and I had a lumpectomy in 2008. We didn't Oncotype because of timing and Onc. felt chemo would be the only choice since I was nearly triple negative (ER/PR/HER). I had 4 rounds of C/T which was fairly well tolerated. Hormone therapy is usually not recommended for triple negatives, but my oncology group suggested that anyone with at least 1% ER/PR positive (I am 5% ER positive) should get whatever benefit possible from taking hormone therapy to reduce the risk of recurrence. I chose to take h. therapy for 5 years. By the way, I noticed you're in San Antonio - I'm in the Temple/Killeen area. I love the Riverwalk!0 -
That makes three of us. I'mDerbygirl said:Chemo and other treatments
Chemo and other treatments are always a choice and I would do whatever I could to reduce the risk of recurrence. My tumor was 1 cm with negative nodes and I had a lumpectomy in 2008. We didn't Oncotype because of timing and Onc. felt chemo would be the only choice since I was nearly triple negative (ER/PR/HER). I had 4 rounds of C/T which was fairly well tolerated. Hormone therapy is usually not recommended for triple negatives, but my oncology group suggested that anyone with at least 1% ER/PR positive (I am 5% ER positive) should get whatever benefit possible from taking hormone therapy to reduce the risk of recurrence. I chose to take h. therapy for 5 years. By the way, I noticed you're in San Antonio - I'm in the Temple/Killeen area. I love the Riverwalk!
That makes three of us. I'm in the San Antonio area too.0 -
I'm in TX too
I am in Fort Worth, TX, my Sister was in Corpus, went to M.D. Anderson in Houston till she passed in 2003. I have had bilat. mastectomy and did chemo & radiation. I'm 44 with a supportive spouse and 2 "tween" daughters. I wanted to do whatever I could to increase my chances of staying around to see them grow up. I haven't heard about getting leukemia in 15 years. Is that because of the particular drugs you might be on, or what? Also, even though each person is unique, I believe chemo works more often than it doesn't, and not everyone has awful side effects. For me it was relatively mild. I had hairloss and chemo-induced menopause, but I kept working full time throughout the experience with very little change in diet (had to avoid Mexican food for about 3 months...very sad!)
I see you had bilateral DIEP. I am scheduled for that June 25 in Dallas. I'm doing in the Summer because I work in Public schools and I won't have to take off for the recovery period. I haven't seen any posts from anyone who has been through it. How long did you keep drains in? How long in the hospital? How long till you could walk around at home? How long till you could get up off the bed? How long till you could go out and about? Any other tips I should know or things to watch out for that the Dr. might not tell me?
Best wishes, seof0 -
Lisa, as others have said,
Lisa, as others have said, chemo is no picnic but it is tolerable. The way I looked at it was if it could reduce my risk of relapse then I had to do it.
My second opinion suggested oncotype but both my onc and surgeon were against it. They both agreed that it had not been around long enough(this was 06)and they said it was not a sure enough thing to take such a chance on.
As far as the risk of leukemia, everything I have read, the risk is only about 1%. I know chemo is a frightening though, I was very worried about it myself, but you have to look at the long term picture and do what will increase your chance of living a long healthy life.0 -
Tough call! However
Tough call! However whenever I was in a dilemma in making a decision like yours I would project myself to the future and imagine how I would feel if it came back. Would I be OK with the decision I'm making today? Or would I say, geez, wish I had of done chemo, maybe I wouldn't have had a recurrence or mets today. Whatever decisions we make we need to be OK with them regardless of what may happen in the future. Hope this helps.
love
jan0 -
That makes 4 of us!Marcia527 said:That makes three of us. I'm
That makes three of us. I'm in the San Antonio area too.
I'm from San Antonio also. I had my treatments with Dr. Lang at the Start Center on Medical Dr. She was at 7979 Wurzbach but moved to the Medical Dr. location in January. Good to meet all of you from here! My last chemo round was Jan 5th and I don'th have to have any rads. The fatigue was hard for me too, I just slept when I needed to and that helped a lot! MJ0 -
DIEP reconstructionseof said:I'm in TX too
I am in Fort Worth, TX, my Sister was in Corpus, went to M.D. Anderson in Houston till she passed in 2003. I have had bilat. mastectomy and did chemo & radiation. I'm 44 with a supportive spouse and 2 "tween" daughters. I wanted to do whatever I could to increase my chances of staying around to see them grow up. I haven't heard about getting leukemia in 15 years. Is that because of the particular drugs you might be on, or what? Also, even though each person is unique, I believe chemo works more often than it doesn't, and not everyone has awful side effects. For me it was relatively mild. I had hairloss and chemo-induced menopause, but I kept working full time throughout the experience with very little change in diet (had to avoid Mexican food for about 3 months...very sad!)
I see you had bilateral DIEP. I am scheduled for that June 25 in Dallas. I'm doing in the Summer because I work in Public schools and I won't have to take off for the recovery period. I haven't seen any posts from anyone who has been through it. How long did you keep drains in? How long in the hospital? How long till you could walk around at home? How long till you could get up off the bed? How long till you could go out and about? Any other tips I should know or things to watch out for that the Dr. might not tell me?
Best wishes, seof
seof,
Check oout the thread: "MD Anderson Cancer Center ORLANDO - DIEP Reconstruction"
Colette had questions and I wrote two long replies about my experience. But you asked some questions I hadn't covered.
I came home on day 7. My surgery was Wed into Thursday am--17 hours, and the following Tuesday I came home. My husband was off all that week, and I really thought I needed him--I was scared that when he went to work that next Monday that I wouldn't be okay on my own, but by then I was.
When I came home, I could walk. You'll be walking in the hospital, or they won't let you come home. We have a two-story house, and I went up the stairs that day. Didn't go unnecessarily, there is a potty downstairs, but the bed was upstairs. I didn't have the strength to sit on the kitchen table chairs and slide them up to the table at first--Pergo floors, so normally sliding was easy. I could get up off the bed by myself while I was still in the hospital--hospital beds are easier than home beds, because the head of the bed was always up. You can't be flat because of the tummy skin that has been pulled way down.
At home I had one of those big hard pillows made for sitting up in bed. The first two nights we arranged me on that with pillows under my knees. It was really comfortable--FOR MAYBE AN HOUR OR TWO! After that it wasn't so good, and because I was propped and arranged, I couldn't move myself. Starting the third night, I moved to the recliner. I could wiggle my rear and sit up a tiny bit, control my own covers....I'm still in the recliner now. Maybe I'll be in the bed later this week?
I came home with four drains, two in the breast and two in the belly. Keeping all the drains close to prevent them being jerked was a continual worry. (I don't know how many times I've been yanked back into a room because my purse strap caught on a doorknob. I DIDN'T want that to happen.) Pinning the drains to your bra worked the best--we tried different things.
First drain came out on Friday when I went in for the first follow-up appt with the plastic surgeon. The next Wednesday, two more came out (so that's two weeks after surgery.) The final one would have come out that day too, but somehow it was stuck. One drain was easy to manage--I pinned it in the center between/below the new breasts, and I could wear my real clothes. That final drain came out Monday, just under 3 weeks after surgery.
The "out-and-about" was all going back in for follow-up appointments until this weekend. I actually rode around on errands yesterday. It's slow getting into the SUV, I'm short and it's not, but it's okay. I did drive myself in to the clinc on Thursday, 3 weeks + two days after surgery.
I had 11 liters of fluid extra when I came out of surgery--I was a real bloated puff-ball. That's normal, they want the fluid to keep pressure on the veins and arteries that keep the new breasts alive. But it would have been nice to know to expect that. My husband just today told me when he first saw me after surgery, that was the one time he was scared--he didn't recognize me. Hard to put on shoes with fat feet!
I actually made bisquick biscuits yesterday for breakfast for us, I cut up a salad one day last week for our supper, I've managed my lunch alone for a while now.
Showering was hard in the beginning, and I needed a lot of help. I had spit-baths in the hospital, but was cleared for a shower once I went home. We tied the drains together and rigged old belts over the shower curtain rod to suspend them at close to the right height. I braced myself, and my husband washed. The water running over everything felt good. The shower is still the only time I have the abd. binder and the bra off, so that sort of feels good too. Took an hour the first time--the bathroom and the husband were all soaked! We got better at it.
When my husband went back to work, we moved the showers to evening, which I hated, but we couldn't do it early enough for him to leave for work at 6 am. After I got down to one drain, I was pretty much doing it all on my own. I had hubby hang out in the bathroom while I managed on my own. Then last Monday, after he went to work, I showered on my own and have since then. I don't like the idea of getting in the shower, but love it when I'm in there. I let the water hit my back and neck and gently run down my front.
Too long of a post. Let me know if you have other specific questions.
Lisa0 -
Thank you very much...thisLtalcott said:DIEP reconstruction
seof,
Check oout the thread: "MD Anderson Cancer Center ORLANDO - DIEP Reconstruction"
Colette had questions and I wrote two long replies about my experience. But you asked some questions I hadn't covered.
I came home on day 7. My surgery was Wed into Thursday am--17 hours, and the following Tuesday I came home. My husband was off all that week, and I really thought I needed him--I was scared that when he went to work that next Monday that I wouldn't be okay on my own, but by then I was.
When I came home, I could walk. You'll be walking in the hospital, or they won't let you come home. We have a two-story house, and I went up the stairs that day. Didn't go unnecessarily, there is a potty downstairs, but the bed was upstairs. I didn't have the strength to sit on the kitchen table chairs and slide them up to the table at first--Pergo floors, so normally sliding was easy. I could get up off the bed by myself while I was still in the hospital--hospital beds are easier than home beds, because the head of the bed was always up. You can't be flat because of the tummy skin that has been pulled way down.
At home I had one of those big hard pillows made for sitting up in bed. The first two nights we arranged me on that with pillows under my knees. It was really comfortable--FOR MAYBE AN HOUR OR TWO! After that it wasn't so good, and because I was propped and arranged, I couldn't move myself. Starting the third night, I moved to the recliner. I could wiggle my rear and sit up a tiny bit, control my own covers....I'm still in the recliner now. Maybe I'll be in the bed later this week?
I came home with four drains, two in the breast and two in the belly. Keeping all the drains close to prevent them being jerked was a continual worry. (I don't know how many times I've been yanked back into a room because my purse strap caught on a doorknob. I DIDN'T want that to happen.) Pinning the drains to your bra worked the best--we tried different things.
First drain came out on Friday when I went in for the first follow-up appt with the plastic surgeon. The next Wednesday, two more came out (so that's two weeks after surgery.) The final one would have come out that day too, but somehow it was stuck. One drain was easy to manage--I pinned it in the center between/below the new breasts, and I could wear my real clothes. That final drain came out Monday, just under 3 weeks after surgery.
The "out-and-about" was all going back in for follow-up appointments until this weekend. I actually rode around on errands yesterday. It's slow getting into the SUV, I'm short and it's not, but it's okay. I did drive myself in to the clinc on Thursday, 3 weeks + two days after surgery.
I had 11 liters of fluid extra when I came out of surgery--I was a real bloated puff-ball. That's normal, they want the fluid to keep pressure on the veins and arteries that keep the new breasts alive. But it would have been nice to know to expect that. My husband just today told me when he first saw me after surgery, that was the one time he was scared--he didn't recognize me. Hard to put on shoes with fat feet!
I actually made bisquick biscuits yesterday for breakfast for us, I cut up a salad one day last week for our supper, I've managed my lunch alone for a while now.
Showering was hard in the beginning, and I needed a lot of help. I had spit-baths in the hospital, but was cleared for a shower once I went home. We tied the drains together and rigged old belts over the shower curtain rod to suspend them at close to the right height. I braced myself, and my husband washed. The water running over everything felt good. The shower is still the only time I have the abd. binder and the bra off, so that sort of feels good too. Took an hour the first time--the bathroom and the husband were all soaked! We got better at it.
When my husband went back to work, we moved the showers to evening, which I hated, but we couldn't do it early enough for him to leave for work at 6 am. After I got down to one drain, I was pretty much doing it all on my own. I had hubby hang out in the bathroom while I managed on my own. Then last Monday, after he went to work, I showered on my own and have since then. I don't like the idea of getting in the shower, but love it when I'm in there. I let the water hit my back and neck and gently run down my front.
Too long of a post. Let me know if you have other specific questions.
Lisa
Thank you very much...this is very practical, specific information. seof.0
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