I'll start with the basics. The standard of care for someone with my breast cancer is to do the double mastectomy to get rid of the tumor first. Then the chemo is done to kill any cancer cells that were not attached to the tumor and may have escaped into my body. We've done that so far, and hopefully it's the most difficult part of my treatment.
Coming up, I'll receive radiation, meaning I will lay in a machine for a few minutes each day for six weeks while radioactive beams are directed towards the exact area where the tumor grew. That is supposed to kill any cells that are lingering in that area.
Finally, for the next five years, I will take a pill (Tamoxifen - a hormone) each day to block the estrogen in my body. That's because my cancer cells were found to really like estrogen, so we'll cut off the food source of any that may decide to grow in the future.
Sounds like we're covering all of the bases, right? I am not questioning any of this treatment, so big picture, everything will be done to ensure that I will never have to deal with breast cancer again.
My dilemma right now is the timing. Here's where I have to go back a few months to explain. Right after my mastectomy, I was definitely feeling the discomfort of having my breast tissue removed and these expanders (uncomfortable bags of saline) inserted in their place. Through March and April, I was swollen and the scars and skin were painful. I had a meeting with Dr. Baum, my plastic surgeon, and asked, "When will we take out the expanders and put in the softer silicon implants?" He responded by telling me that he'd optimally like to do that before the skin is radiated. Evidently, radiation will make my skin tough, less pliable, and more prone to infection. Sounded good to me.
I went ahead and asked Dr. Alpert, my radiation oncologist, and she said that it's sometimes done that way and she'd be fine with it. We'd just start radiation a few weeks after the silicon reconstruction, when my skin had healed a bit from that. Cool with me. Everyone was on board.
Then I had 4 months to think about this. During that time, my boobs started to heal. The swelling went down and I've gotten used to the expanders. (Instead of feeling like huge hockey pucks in my chest, they feel more like beanbags.) So I've been thinking, shouldn't I be worrying about cancer first? Shouldn't we be radiating that area where the cancer cells grew, like, right now?!? If I do the radiation first, I'd have to wait quite a while (six months?) for my skin to heal before Dr. Baum could do the silicon surgery, but I've lived with expanders now for 5 months, so I can keep them in. And my boobs might not be as even and pretty if the operation is after radiation, but I don't care about that.
By consulting the internet, it seems that most people (or at least most people who write about their experiences on the internet) have radiation after chemo and then the reconstruction is done later on. But there is not a medical site that I can find that gives the steps one should take and has medical reasons why things are done that way. So I had to wait to talk to a doctor.
Finally, on Monday of this week, I had my post-chemo visit with Dr. Kirshner, my medical oncologist. (Medical oncologists are the ones who decide on your drugs like AC, Taxol, and Tamoxifen, that hormone I mentioned above.) He started with, "You're done with chemo. I'm thinking we'll start radiation right after Labor Day." Quick calculation in my head told me that he was giving about a 5 week break between chemo and radiation. Since my lay-person's goal of right now was not on his schedule, I threw my questions at him. He, like Dr. Alpert, said, "Of course you can go do the reconstruction. A few extra weeks between chemo and radiation won't make a difference."
I started asking him for proof/numbers to reassure me that it truly doesn't make a difference. He said that he's sure there are no studies about the timing of starting radiation when it's just a few weeks. Anything out there would be about starting 6 months down the line or something. I said that if I could bump my survival chances up, even by a percentage point or two, I'd do the radiation first, and he said it really won't make a difference.
One reassuring thing he did say is that we will start the Tamoxifen right after Labor Day, regardless of whether I'm doing radiation then or not. So even if we are not radiating any lingering breast cancer cells, they will not be getting any estrogen, so they can't grow.
So here are the options:
Choice 1 - Get my perky little silicon boobies put in at the beginning of September, take Tamoxifen to make sure cancer cells don't grow, and start radiation when I heal, probably the beginning of October, about 2 months after chemo.
Choice 2 - Radiate my right breast/armpit starting at the beginning of September because we like to fight cancer and because most people do it that way, but not because I have any medical advice to do so. Then have the silicon implants put in sometime next spring.
Of course, I've done a pro/con list:
For doing reconstructive surgery now:
- Will have hormone therapy going
- It'll be easier for Dr. Baum to operate and my recovery may be easier
- I can get everything done in 2012, nothing hanging over our head for 6 months (this is relevant not only for my sanity but because Maggie has been having some emotional/behavior issues that may be related to my being "sick")
- Would only delay the radiation for about 4 weeks
Against doing reconstructive surgery now:
- Would be delaying the "standard of care" by about 4 weeks
- Will have hormone therapy going
- It'll be easier for Dr. Baum to operate and my recovery may be easier
- I can get everything done in 2012, nothing hanging over our head for 6 months (this is relevant not only for my sanity but because Maggie has been having some emotional/behavior issues that may be related to my being "sick")
- Would only delay the radiation for about 4 weeks
Against doing reconstructive surgery now:
- Would be delaying the "standard of care" by about 4 weeks
One more thing. I have an appointment on Friday afternoon with Dr. Alpert (radiation oncologist) who may have more insight. Yes, she "okayed" the surgery back in March, but now I'll ask what she recommends and why.
Okay, people who are still reading, what do you think? Up until now, the cry has been "Fight the cancer!" Is it time to not fight for a few weeks? Vote in the poll on the right side of my blog.
I can't vote so easily. My thought is if you can say you are comfortable waiting for radiation then do the reconstruction now for yourself and Maggie. If at any point in the future you think you may look back and think, "what if" because you waited to start radiation, then radiation first, reconstruct second. You're a warrior and can get through a little more discomfort after surgery if you need to. My $.02 worth. Good luck!
ReplyDeleteI totally understand your $.02. Sometimes, that future "what if" is yelling at me full-force and I am sure that I should only make decisions that can fight-fight-fight the cancer. But sometimes I remember that statistics are just numbers based on *other* people. My body is probably going to do what it's going to do, so I have to keep my sanity, too.
DeleteSince I'm thinking the latter right now, I truly appreciate you reminding me of the future what-ifs.
I don't have a specific vote, and I haven't been in the situation myself, but based on my experience with family members I think quality of life plays a huge role. Sometimes fighting as hard as you can fight doesn't lead to the best outcome. Okay, so hope that doesnt make things more confusing. Whatever you decide will be the right decision for you.
DeleteNot at all more confusing. As you can tell by looking at my pro/con list, my mind is leaning towards "quality of life", but I want to be able to justify it. Thanks for your support!
DeleteI think you need to do what feels right to you. From a medical perspective, though, I don't think waiting a few weeks for radiation will make a big difference. You have already been aggressive with having the bilateral mastectomy and chemo and you will be on tamoxifen. The radiation at this point is more to prevent recurrence in the future so holding off a month or so to have the surgery should not make a significant difference. On a personal note, I am so in awe of your honesty, strength, and courage and will recommend your blog to all of my patients going through breast cancer treatment. Shari, your daughters are so lucky to have such an amazing role model in you!
ReplyDeleteI like your sentence, 'The radiation at this point is more to prevent recurrence in the future'. It makes me think I may be misunderstanding what radiation does. I thought it was targeting cancer cells, but is it targeting the area/environment instead? It's a question to be armed with at my radiation oncologist's appointment tomorrow.
DeleteThanks so much for following along and encouraging me. I'm happy to share with anyone who asks or needs support.
So what do the studies about starting radiation 6 months down the line say? Because obviously if they say 'looks OK', 4 weeks would also be OK.
ReplyDeleteReading between the lines of what Dr. Kirshner was saying, I'm thinking that 6 months would be a problem. That's another good question to be armed with at my appointment tomorrow.
DeleteI also would tend toward the "quality of life" argument of getting the surgery over first. The docs aren't worried about the delay, it would be a "better" surgery which could mean easier recovery, and it doesn't willfully violate the standard care. Only caveat would be if you think you will obsess over the what if and that would undermine your peace of mind.
ReplyDeleteI need to add the future peace of mind point to the "choice 2" list. But even with that, I'm thinking if the radiation oncologist tomorrow encourages me to go for the surgery first, I'll probably go for it.
DeleteNone of us can vote on what you need to do. When I was in a similar situation I gathered the risk/benefit analysis from my teams of doctors, then talked with different patients of the plastic surgeons. It all depends on the grade, or the particular biology of your cancer and how you are responding to treatment.
ReplyDeleteI opted for delayed reconstruction, about a year after I finished treatment, and that worked for me.
All the best,
jody
Thanks so much for responding, Jody. I've figured out in the past 24 hours that it's not really a vote-able question. This blog post has had over 150 page views and has only 11 votes (one being my husband). At this point, I guess I'm just looking for input/info that I can add to my list of questions for the doctors. Asking other women who have been there gives me that much greater of a knowledge base from which to draw. Again, thanks for taking the time to respond.
DeleteHi, yes I agree with Jody 100% -- we can not vote on your decision. I did the same thing she did -- consulted with my medical team, did additional research, asked them more questions, made sure I understood what I was getting myself into and made my decisions.
DeleteOne thing you might want to ask your medical team (rad onc, med onc and surgeons)is about the medical risk/benefit analysis of the effect of radiation on your recovery from surgery if you were to do the surgery after the radiation. As I understand it (I am not a doctor, I am a 3X BC survivor), un-radiated skin has a tendency to heal faster and with less complications from surgery.
I wish you the best of luck... these decisions can be agonizing.
Sending you all my best,
Liza aka @itsthebunk
I would do it now, that's what my doc recommended. Maybe we can get a 2 for 1 as mine should go in about then lol!! You amaze me every day woman keep it up.
ReplyDeleteI'm voting for the zap the crap asap....it seems consistent with your philosophy on it all so far, but the maggie part is worrying....i guess only you and paul know that answer with that part involved....i'm sure you'll choose the "right" one eitherr way....wow, i never thought i'd be voting on my sister's breats :)
ReplyDeleteHaha! And I bet you have the website sharisboobs bookmarked on your computer. Today, I'm starting to lean toward the zapping choice, but I waver by the hour. Hopefully I'll feel like I'm in a better position to make this decision tomorrow after my appointment.
DeleteBeen pondering this overnight, I'm wondering if there could be "what if's" on the other side of the equation with Maggie... she is about to start school right? If everything is fine health wise in 3 years time but Maggie hates school/isn't integrating/ etc will you be saying "what if we had been able to give her a more stable/normal first year?" Perhaps projecting too much of the current drama with my five year old on to this situation, but thought it was worth mentioning. All the best for your meetings with the doctors.
ReplyDeleteAlthough I know it's not about school (she's looking forward to her second year at the same preschool), I like the idea of considering the long term for her. It's hard to watch her be angry, sad, negative, and disrespectful ALL DAY EVERY DAY, but will a few months this winter really make a difference in the long term? It won't. And if she does continue on this path for years, it's something more than my health.
DeleteGood luck with Albert and his drama. Ah, parenting.
I have been mulling this over for 24 hours now....and I'm still no further forward in giving you my recommendations and thoughts. Part of me says....do something for yourself and do the reconstruction now while it'll be easier. The other part of me (the obsessive-compulsive, control freak part) says "don't delay in anything that will prevent the cancer from coming back, spreading elsewhere etc. You do not want to give that little f*@%er any chance of growing, spreading, hiding etc. Ultimately, I know you know that it's something only you can decide. If 20 years down the road, something bad happens, will you feel guilty and forever live with the question of "what if I'd had the radiation right away?"....if so, then do it now. You can delay getting brand new boobies and, sure the recovery might be a little harder, but you'll still get the boobies. It doesn't work quite so well the other way....hmm...guess we see which side I just came down on. Hold on while I go vote! ;-) Perhaps it's having just lost my dad to bladder cancer that I want to see you kick the ass out of this thing and not give it a chance in hell of coming back. I totally understand the concern with Maggie and not wanting to drag this out....but if you take a step backwards and look at the bigger picture....another 6 months or so of mommy being sick (although nothing like what you went thru with chemo, I hope!) and maybe some therapy for Maggie to help her deal with this vs. cancer possibly coming back down the road....I know what I'd opt for....and I know that Maggie will want her Mommy around for as long as possible.....OK...I'm rambling and not being of any help, so I will shut up now!
ReplyDeleteI'm starting to feel that way today, Liz. I guess having a few people vote that they'd fight it now made me more certain that I'll regret it down the line if something comes back.
DeleteWe actually have started the therapy route for Maggie. We saw someone 3 times who I totally didn't click with and thought was useless, so we asked around for some good names. We have an appointment with a good one for a couple weeks from now and my fingers are crossed.
Thanks for your rambling. It's how my mind is working now, too.
Basically, it doesn't seem like there is a "right" answer....just a "right for you" answer. And it has to be one that you can live with now....and years from now. Maggie will get through this....you and Paul love her to death and will do all you can for her....but it's OK for Mommy to put dealing with cancer first (it's just a short term thing that will allow you to dedicate the next 50+ years to being the best Mom ever). And as Maggie gets older, she, too, will understand why things had to be this way for a bit. If you delay anything because of the impact on Maggie, imagine how she'll feel if the cancer comes back down the road and she finds out somehow (or even suspects) that it was her difficulty handling things that contributed to your decision to delay radiation....it might not be just you who ends up wondering "what if radiation had been done sooner?",,,,and I know that's not something you want Maggie to shoulder (even if the ultimate decision wasn't hers). Have any other moms encountered behavioral issues in their young ones stemming from the treatment? I'm sure it is pretty common....and maybe hearing from someone who's kid went thru it and came out the other side OK will help ease your mind. I'm glad that you guys are being proactive and getting her some help now to help her process all of her fears and feelings. Cancer is hard for adults to come to terms with and grasp.....to have to do it at her young age is heartwrenching! I hope your next appt goes better....finding a therapist you click with is so, so, so important...especially when they're helping your kid. Keeps us posted!
DeleteI would probably do radiation first b/c I think I am like you and dont'care about the vanity and just want to kill the cells. However I know the difficulties with Maggie are relevant. Hopefully with a new school year starting she will have other distractions and maybe the extended weeks won't make too much of a difference. hugs!! no decision anyone should have to make <3
ReplyDeleteHi Shari,
ReplyDeleteMy name is Courtney, and I have been following your blog for the past week after I found it on the gealthline site. I am 37 and was diagnosed with breast cancer in the spring. I've had a double mastectomy with tissue expander placement, 4 rounds of taxotere and cytoxan, and will soon have radiation, surgery, and then tamoxifen. I also have a husband and 5 sons. :)
I have wrestled with this same question - radiation first or surgery first? Ultimately, together with my slew of doctors, it was decided that surgery would come first. This is how they do it at Sloan Ketteribg, and apparently they have more favorable results than doing radiation first. I felt the same as you - I wasn't too concerned with my appearance as long as I'm here to enjoy my life! But then ur was explained that there is a lesser risk of complications if you do surgery first - complications that can cause significant pain and require further surgeries down the road .
I will have surgery next week and start radiation when I am healed - which will be almost 3 months after the last chemo. And I won't start tamoxifen until after radiation - the reason being that if there are any living cancer cells in my breast, they want them to be zapped by radiation! I'm putting my faith in my doctors and planning in living for 50 more years.
Please let us know what your doctors tell you.
Take care, Courtney
Courtney,
DeleteThanks so much for adding your input. Since you're going through this, hearing from you helps me both emotionally and in terms of answering my questions. I was almost committed to calling tomorrow morning to tell Dr. Alpert that we'll radiate first, but now I'm going to think a little more for two reasons. You mentioned Sloan Kettering, and everyone knows they're cutting edge, so respected, etc. Also, I have to think about how much it would bother me to have to deal with complications after the exchange surgery.
Interesting about the tamoxifen. I found this: http://www.breastcancer.org/treatment/radiation/ask_expert/question_24.jsp and it indicates that either way is fine, but now I'm going to ask Dr. Alpert about that timing, too.
It's been frustrating that all of my doctors are leaving this up to me. I sometimes wish they'd just tell me what to do.
Again, thanks for reading and for telling about your experience. I'll be thinking of you and hope to hear from you again.
-Shari
Shari,
DeleteIsn't it just the most frustrating to be making these decisions?? I was told I did not have to radiation, but I pushed my oncologist and he sent me for a few opinions. Two RO's said yes, do it. One said it's not needed. To further complicate matters, my oncologist had been firmly against it so when one RO said No, I thought he'd heartily agree. Instead, after I collected the opinions and went happily back to him thinking there would be no radiation, he totally rained on my parade and said he'd changed his mind. I felt like I was trying to follow the bouncing ball and it kept getting away from me!
It's true that Sloan Kettering does surgery before radiation, but that doesn't mean that there won't be complications. They just seem to find that the risks are lower that way. Radiation and implants don't mix - whether the implant be silicone, saline, or tissue expander. Lucky us!
About tamoxifen - I'm debating starting now and then taking a hiatus during radiation. I'm waiting for my RO to weigh in on that. I'm feeling a bit "unprotected" right now!
I love that you kept a blog. I wanted to do the same but my kids are older (up to 15) and I had to respect their privacy. It was enough that I talked about it on Facebook!
What did your doctors end up saying? Have you made a decision?? I agree completely that while having knowledge is a wonderful thing, I DON'T want to make all the decisions! I'm happy thinking the doctors know at least a little more than me. Also, you linked to breastcancer.org - Marisa Weiss, who created that site, is my RO. :)
Happy Thursday!
xo Courtney