Becca and I have made a decision about radiation. This post is about that and in her words because how can I express the thoughts in her head better than her. I have been her sounding board and have given my opinions on this but let's face it, it's her life and her body. Whatever she decided I would back her 100%. I am thrilled with the decision she made though :)
We got a second opinion from another radiation oncologist on Thursday who had basically the same opinion as the first radiation oncologist we saw: I'm in the grey zone; because of my age would like to overtreat instead of undertreat; I'm one of those cases where they just don't know if radiation is truly necessary after chemo was done first, and I went node positive to node negative (they don't even take pathology results into consideration because at this point they still treat based on initial diagnosis, but I could be part of a clinical trial that is trying to answer this very question. Same thing. About the same numbers.
Here's what it boils down to:
Right now, my chance of getting cancer again ranges between 10%-15% (one of the docs said closer to 20%, but I trust the one who was holding a medical book with actual numbers and graphs)
If I were to have radiation the number would decrease to about 5% or so.
On the other hand, if I had radiation, my chances of getting lymphedema ranges around 20%-30%. (One doc kind of poo-pooed it off, the other was pretty serious about it. "Radiation comes at a cost" is how she put it.) There are also major skin issues that could pop up, my reconstruction would not only be postponed to next summer, but the scar tissue created by the radiation could make the reconstruction more difficult and look less natural. Not to mention chances of developing other cancers, heart and lung issues, etc.
So, do the risks outweigh the benefits? What would you do?
Chris and I have been dwelling on this decision for weeks now. I think we've shed just as may tears over making the "right" choice as we did when I first found out about the carcinoma. Here's what we've decided.
No.
I'm done. No more.
Going from a 15% to a 5% chance just isn't enough for me to risk all of those side effects. If I had a 30% chance and it dropped down to 10%, then yes, by all means. This just isn't enough for me. I want to get on with my life! Chris equated it to blackjack and I can't remember exactly how he put it, but things have been going so well so far, we don't want to take the chance with the odds they are that the one last treatment that was supposed to make me better makes the rest of my life miserable.
I could be a part of the study, sure. It would help women in my situation in the future and I love that, but I want to make my own decision about what I do here. The outcome could be in my favor, but I also have an equal chance of having to go through radiation. Those are odds I don't like.
We don't know if cancer will rear it's ugly head again. I would have that chance whether I had the radiation or not, but in the meantime I know I'm feeling good, I'm happy and healthy. I'm going to be on hormonal therapy for the next 5-10 years to help suppress any possibly dormant cells from waking up, and I'm going to be taking such good care of myself and doing everything possible to try to prevent it - but who knows. And if it does come back, treatments advance in that field so quickly that perhaps they'll know more and have a better way to treat it.
Anyway, that's what we finally decided. Now I just have to grow the balls to call the doctor and say no thanks. I hope you all can understand this decision, but to us, the odds just aren't worth it.
Now, we can all move on, I can start my hormone therapy and schedule the completed reconstruction.
The blackjack reference has to do with the title of this post. She was dealt a 19 after chemo and surgery and unless you are 100% positive you can get a 2 on that next card odds are you're going to bust. We don't want her busting now do we?
Sunday, September 14, 2014
Thursday, September 4, 2014
No Longer Borg. Now a Water Balloon.
Hello there my little gumdrops! Been awhile huh? Sorry about that but it's been no news is good news around here. Time to catch you up on the little milestones and any news we may have for you. Ready....Set....
Drains! They are out. First one was out a week out after surgery. Second one took a little longer but was finally removed around the 19th. The second one was like foot long! I will say I won't miss emptying those. PT started on the 12th and After a lot of pain and a few frustrated tears shed I can now say she has almost full range of motion and is feeling tons better. Planning on going back to the office next week. She has been working from home but now she is confident driving and the docs have given her the ok. She still has a weight restriction but I think that will be lifted sooner rather than later.
We worked the Brat Pit at the walworth county fair and although Becca had to skip the last day I think she did really well. After sitting around for a month and then be up and working like that I was surprised she lasted the two days she did. Overdid it though and welcome back recliner heating pad and good ole Mr. Valium. This week we finally saw the Radiation Oncologist. I'm going to try my best to explain everything to you here but I'm sure I'll miss something.
Again she has the option to enter a trial. Created for people in her situation (the grey area) who could have radiation or not in the effort to ascertain if radiation after mastectomy should be the standard of care anymore. So she can participate in the trial and be randomized again.Then she would either have radiation or she wouldn't. She can just choose to have radiation or choose not to outside of the trial. There is an increased risk of lymphedema with radiation. Something like 15-20%. But with her type of cancer, and the fact that she is at the higher end of basically saying YES you NEED radiation, the recurrence rate is 12-15% after chemo.
Still he was impressed with her outcome from chemo and surgery. I could tell he was. And I think he should take this into account. She's 95.5% cured here. There is ALWAYS going to be a chance or the cancer returning because it's cancer. It's always going to be in the back of our minds. What we still want to know is IF she has radiation and takes on all the small risks as well as a bigger risk of lymphedema how much does that 12-15% drop? In my opinion if it's not down to less than 5% I'd say no way. But that's me. There is a reason they are doing this study in the first place. They have found that women like her don't necessarily NEED radiation and now they want to back that up. And they should. I just don't want her to risk it.
Add in the fact that she wants this over with. Radiation would postpone her reconstruction for as much as a year! Superficial I know. This is small potatoes when comparing the risk of death I know that too. But with where she is at I can't say I'd blame her. By the way for all you wondering the size will remain the same lol. Not for a lack of trying on my part mind you. I mean come on a free boob job? They can't charge us anymore this year so if she ever wanted bigger or smaller now would be the time to do it right? RIGHT? Help me out here!! Nah it's all good it's fine :) (seriously call and tell her bigger is better).
We have more literature to go through and will be talking with another oncologist today for a second opinion so we'll see where we are at the end of this week. If she decides on no radiation she will start taking her tamoxifen, a couple more fill ups and then then surgery. Oh yeah. The water balloon part of the title. Bet you thought I'd forgotten you silly gumdrop. I did. Sue me we gots nothin lol.
She had a tissue expander put in and filled initially with 150 CC's of fluid. Every week starting a few weeks back we going and they filler' up. Like a water balloon in her chest. They add CC's of saline to the point that the skin has stretched enough to accommodate the implant. Each fill up is 75-100 CC's depending on how the skin looks. Last one was 75 CC's. When the desired size is reached surgery would be scheduled.
Till next time er'body. Hope to have an answer on radiation with the next post and I will try to make it quick.
Drains! They are out. First one was out a week out after surgery. Second one took a little longer but was finally removed around the 19th. The second one was like foot long! I will say I won't miss emptying those. PT started on the 12th and After a lot of pain and a few frustrated tears shed I can now say she has almost full range of motion and is feeling tons better. Planning on going back to the office next week. She has been working from home but now she is confident driving and the docs have given her the ok. She still has a weight restriction but I think that will be lifted sooner rather than later.
We worked the Brat Pit at the walworth county fair and although Becca had to skip the last day I think she did really well. After sitting around for a month and then be up and working like that I was surprised she lasted the two days she did. Overdid it though and welcome back recliner heating pad and good ole Mr. Valium. This week we finally saw the Radiation Oncologist. I'm going to try my best to explain everything to you here but I'm sure I'll miss something.
Again she has the option to enter a trial. Created for people in her situation (the grey area) who could have radiation or not in the effort to ascertain if radiation after mastectomy should be the standard of care anymore. So she can participate in the trial and be randomized again.Then she would either have radiation or she wouldn't. She can just choose to have radiation or choose not to outside of the trial. There is an increased risk of lymphedema with radiation. Something like 15-20%. But with her type of cancer, and the fact that she is at the higher end of basically saying YES you NEED radiation, the recurrence rate is 12-15% after chemo.
Still he was impressed with her outcome from chemo and surgery. I could tell he was. And I think he should take this into account. She's 95.5% cured here. There is ALWAYS going to be a chance or the cancer returning because it's cancer. It's always going to be in the back of our minds. What we still want to know is IF she has radiation and takes on all the small risks as well as a bigger risk of lymphedema how much does that 12-15% drop? In my opinion if it's not down to less than 5% I'd say no way. But that's me. There is a reason they are doing this study in the first place. They have found that women like her don't necessarily NEED radiation and now they want to back that up. And they should. I just don't want her to risk it.
Add in the fact that she wants this over with. Radiation would postpone her reconstruction for as much as a year! Superficial I know. This is small potatoes when comparing the risk of death I know that too. But with where she is at I can't say I'd blame her. By the way for all you wondering the size will remain the same lol. Not for a lack of trying on my part mind you. I mean come on a free boob job? They can't charge us anymore this year so if she ever wanted bigger or smaller now would be the time to do it right? RIGHT? Help me out here!! Nah it's all good it's fine :) (seriously call and tell her bigger is better).
We have more literature to go through and will be talking with another oncologist today for a second opinion so we'll see where we are at the end of this week. If she decides on no radiation she will start taking her tamoxifen, a couple more fill ups and then then surgery. Oh yeah. The water balloon part of the title. Bet you thought I'd forgotten you silly gumdrop. I did. Sue me we gots nothin lol.
She had a tissue expander put in and filled initially with 150 CC's of fluid. Every week starting a few weeks back we going and they filler' up. Like a water balloon in her chest. They add CC's of saline to the point that the skin has stretched enough to accommodate the implant. Each fill up is 75-100 CC's depending on how the skin looks. Last one was 75 CC's. When the desired size is reached surgery would be scheduled.
Till next time er'body. Hope to have an answer on radiation with the next post and I will try to make it quick.
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