Don't look back. Seriously.
Okay, I'm writing this for myself as much as anyone. The news story about ALND and how it should not be the standard practice for breast cancer surgery has shook us up, or at least it has me. It's hard not to look back and question and do the 'shoulda woulda coulda' dance. Of course, for those of you with just 2 nodes removed and a flaming case of LE, this doesn't really affect you. For people like me, with 8 nodes removed, it raises a bunch of questions about what I could have done differently.
And I've decided I don't give a flip. Yeah, I'm proud for the women who come after me who can avoid LE if at all possible, who get better care, education etc., but it's too late for me. It's done - spilled milk, and all of the looking back in the world will not change anything. And I'm not totally sure I would have done it differently anyway. I just hate the doubts that this creates.
I chose to dye my hair burgundy w/temporary color when I was in college. MISTAKE. It took 9 months to grow out - I looked like a combination of Marilyn Manson/Strawberry Shortcake. Not cool. I went to a massage parlor in a very small remote corner of Northern China (an hour from the North Korean border) because I thought it would be zen-like and spa-ish. WRONG. I took up acting in high school and slaughtered the written word of Agatha Christie and traumatized my whole family with my horrific performance. EMBARRASSING!!!!!
Based on the info. I had at the time of my cancer diagnosis, I and my dr. made the best decision possible. It wasn't like some of the other sucky decisions I have made. Those were based on a combo. of stupidity, ego, and curiosity (massage parlor in remote, northern China). 
Life goes on. Mastectomies have changed so much in the last 30 years - it stands to reason that they will get better and better at this, and maybe one day, women will not have to wear stupid, freaking compression garments, and wrap their arms, and go through all of the shit we have to go through. I hope that happens. And I hope I have enough integrity and charity to be happy for them and not selfishly resent their having dodged the bullet just because I didn't.
I'm sorry for the language. But if women in the not so distant future get to avoid this, then it's okay. Even if I didn't.
I love you guys.
Comments
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You are so right. Should, woulda, coulda can't be part of your vocabulary. You do the best with the knowledge, advice and information you have at the time.
So much has already changed since I was dx in 1992 and 1993. Nearly 2 decades ago. ACK! Things will continue to change and progress, hopefully for the better.
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Suzy, you said it beautifully, as always.
You know what, even those of us who got it with "just a SNB" are finding this study hurts: because it makes me (us?) think about the times when something could have been done to prevent our minimize my LE and it wasn't.
I just wrote a new page for stepupspeakout.org on information for medical providers, and it just poured out--I just felt this huge need to inform people, set the record straight.
When harm has been done to us, collateral damage done with the best of intentions--we still feel the harm and the grief.
It is the doubts that are haunting: why didn't I get a second surgical opinion? why didn't I know to tell her to aspirate my seroma? why didn't I read and understand the LE risk reduction guidelines? Why was I so frantic to get the surgery done before my daughter's wedding that I rushed into it?
But you said it: although mistakes may have been made, they're done and the best path is to move on and deal with it, and not to resent the fact that the women who come after us will have better options. I got to have oncotype dx and dodge chemo--other women didn't have that option.
Suzy, you are amazing--and the thought of you in North China for a massage, with purple hair, and as the lead in a play--you go for it, and that is what makes for a full life.
Hugs and admiration
Kira
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I had 17 nodes removed and while my LE is very mild -- not flaming -- I would probably not have gotten it at all under the new approach. But I regret nothing. I am a circa 2004 breast cancer survivor, with all the limitations inherent in that date, still alive in 2011 so I think I got the good end of the deal.
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Kira, if you could have seen me, you would have been hooting - during all of the scenarios I listed. I loved, loved, loved, China. The people were awesome - I just fell in love with them; but the massage parlor I did not love so much. It was neither zen-like nor calming. It has made great fodder for dinner parties, though, but I have to be careful who I tell it to, because I come off as kind of insane. Imagine that.
I kind of teared up when I typed this topic, kira. I totally understand what you are talking about with the frustrations, collateral damage, the doubts. Sometimes it's tough, isn't it? But life goes on. And it's not fair, but it's good alot of the time, and I guess that's okay.
MOTC, you rock - you know I'm a fan. You should have an action figure made in your likeness, girl.
Trisha, you are so cute in your photo - love it!
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Brilliant post, Suzy....I agree totally and will not go for a massage in Northern China! haha. Thought more people would be talking about this study (link posted below for those who haven't seen it). What is done is done. Plus, this is progress, right? Let's be happy for those getting better treatment down the road.
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Suzy, you make me laugh and cry at the same time! It's terrific how you just put yourself out there. Love you!! You are right on the money about this one. I try not to look back . . . I had a SNB "just to be sure". In hindsight, DH said I did it to have peace of mind, but with DCIS it really wasn't necessary. I was afraid then and listened to the dr., but what did I know? With six biopsies right before the bilateral mast and immediate recon with expanders and implants, it's really hard to point a finger. It is what it is. Have to live in the present and move on.
Thanks for making my day with your humor and honesty, Suzy. I am mentally preparing to have my implants removed, and let me tell you, that's another whole issue of woulda/coulda/shoulda. I know we make the best decisions we can during a highly stressful time, but when I think about that one I really question my sanity! Hey, everyone was doing it!!
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Hi, Tina;
Thank you for your kind words! I am so sorry you're struggling with implants. I had a bmx too, and did not do recon. I miss having boobs, but I didn't like any of the options...and a bra really hurts me on my LE side.So I'm flat as a flitter and just own it. I figure if men can wear bad toupees and have big beer guts and feel no shame, then I shouldn't feel bad about my flat chest. It was kind of flat before my bmx...just not concave!
And I know what you mean about questioning and how 'everyone was doing it'...I thought about it very seriously! My husband (the man is a saint.) talked me out of it, and I'm grateful. Are your implants hurting you?
Sending good thoughts, hugs and prayers your way. The agony of stupid bc is never-ending. Ugh.
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Suzy, beautifully said -- thank you!
Binney -
Sigh, I actually had to MAKE myself read your post Suzy. I feel the regrets. But I made decisions based on the knowledge I had at the time. Still, it sucks!
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Thanks, Binney.
Sharon, I'm sending you lots of cyberhugs...I made brownies this afternoon. Coincidence????? I think not!!!!!!
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Suzy, I re-read your post and was struck by how amazingly well you present the truth in a way that makes me laugh, but really gets to the heart of the matter. You have a gift. And I'm in awe.
Thank you, and please send brownies.
And, just to add to the issue of control and decisions: I saw 2 women this week whose SNB removed quite a number of nodes: I just made the connection that both were operated on by the new young surgeon in town--one woman had 5 nodes out in her SNB, the other had 10! And the second woman has bilateral cancer, and her ALND on the other side was about 12 nodes. So, along with decisions, we have to trust in the skill of the surgeons. Neither woman was told how many nodes were removed. One already has LE and the other is frantically worried about it. But won't see a LE therapist.
Oh, and I saw a lovely, older European woman who got extensive treatment at Dana Farber, despite an advanced age, and she has LE--so I don't want to hear that no one gets LE at Dana Farber....
And, I ended my day showing a young RN who has LE after her neoadjuvant chemo and ALND how to do MLD.
I was in a world of hurt today: both for these women and for myself, and Suzy--you just made sense of all of it, and helped me immeasurably.
Kira
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Thank you, Suzy. Your words really helped me put some things in perspective today. We did the best we could with the information we had. Moving on is good.
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well said Suzy. My Dr. did what he had to do. Just wish I had more info on preventing LE once the MX was done.
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On the DCIS line, there is info that even a SNB may not be necessary, so when my SNB turned into 6 nodes being removed in a cluster, and now LE, I've been pretty ticked. I've been mad at the BS for not keeping up with stuff and explaining to me that a SNB may not have been necessary. Ticked. I think there is a time to be ticked, thoroughly angry, and then there is a time to remind ourselves not to look back, as you've done. Still, I hate LE.
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Well said Suzy.
This study also only looked at women with small tumors (Less than 2"). Remember it only changes course for 20-30% of women. I'm sure there are other factors to consider besides tumor size as well.
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Well thats my question. My tumor was 2.9 cm, which i round up to 3 cm cause its easier, but probably shouldn't. So even under the new guidelines I would get the full dissection?
I was thinking today about staging and how they'll do it without full dissections and it occurred to me that they have additional tools for assessing aggressiveness. For example, the oncotype test. This really wasn't in use when i had my surgery. So its not just that they've learned the surgery isn;t always necessary but also that they have other ways of getting at the information they need.
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Suzy, thanks for the good thoughts, hugs and prayers. My right implant has been painful since April 2009. Wasn't until I got a 2nd op in July 2009 that my regular PS finally diagnosed capsular contracture. However, it always felt like it was migrating toward the center of my chest and popping outward, away from my body. I can touch and see what looks like a corner of the implant. My breast surgeon said it might have bulged thru the muscle, but my PS said it had not. In my search for a new PS to remove my implants, one PS said that besides CC, it looked like the implant had popped through the muscle. Thanks, Mr. Original PS for scrapping my BS's accurate diagnosis. I wouldn't have spent this past year trying to deal with the scar tissue if I knew that were only half the problem and nothing short of surgery would fix it. Maybe you should shell out all the money I did for that since my insurance barely reimbursed. Now THAT's going to take me a while to get over being angry about.
Actually, I'm sort of joking about the recon and everyone's doing it thing. My DH said I should do whatever I wanted. I wish he had told me not to since I was really on the fence about it. If I had been 10 yrs older, I definitely would not have. I told myself that when they "expired" I'd have them removed without replacing since I'd be at least 60 by then. Well, they expired sooner than planned, so the gig is up. That's the way the recon crumbles!
I'm so looking forward to being out of pain that I can deal with almost anything. I certainly don't care what strangers think. DH, friends and family love me and don't care about implants - they want me to be healthy, happy and pain free, too.
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Tina, I am so sorry you are dealing with all of that. Being in pain 24/7 is just not acceptable and I'm glad you are getting the implants removed, but I would be ticked off about all that, too.
I hope your surgery is soon so you don't have to deal with the pain too much longer!
I am 41 - I was 40 when I had my bmx. People have really questioned me about why I didn't do recon. Besides it not being their business (but that doesn't seem to stop people), it's really hard to explain to folks how hard it is to make decisions when all of your options suck.
So, I don't try. -
Brownies for breakfast anyone?
The posts on this thread help me to feel less alone with my anger, frustration, resentment and sadness.
Suzy, you are something else!! I wish you would come with me to my next onc appt. In fact, I wish you could all come.
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As a matter of fact, Sharon, I am looking at my brownie resting on a napkin by my coffee cup even as I type!!!!!!
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Oh gee I have brownies in the kitchen. Thanks for the reminder. Going to get one. Managed to sleep in my tribute all night so I guess I deserve one right!
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I don't have any brownies, but I allowed myself to sleep in until 10:30 this morning. I'm just doing low key things around the house today.
Kitty, congrats for making it through the whole night in your tribute. A brownie is definitely in order!
Suzy, I have been amazed that the PS's I just interviewed were loathe to let me call it quits and take away the extra skin after removing the implants. They kept quizzing me about it, thinking I would regret the decision. I quoted the info I had found from the FDA that indicates the likelihood of developing CC again with new implants. They knew the numbers; it wasn't a mystery to them, and it made me question their integrity. I also told them I had originally been on the fence about having the recon to begin with and always planned to take them out and not replace when they expired. It was only then that they gave up on that. One mentioned more progressive surgeries, and I reminded them that one of the reasons I stated for removing my implants is my LE. I'm not involving any other body parts since I rely on what's still functioning optimally to manage my truncal LE. Besides, I like the rest of my body as it is!
Do PS's think it's a failure to deconstruct a patient? Since they're mostly men, does it bother them that we won't have "breasts"? Sometime you just don't have to save the ta tas.
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Tina, you ask some good questions. I've wondered why surgeons seem so reluctant to do simple mast when patients request it, instead of having lump and the potential complications of rads and perhaps chemo. Apparently even some female surgeons have the same problem. I suppose having breasts of some kind is extremely important to a lot of women, or there wouldn't be so many recons done, but still, if a woman says she is finished with a breast, can't they just assume we know what we're talking about?
I knew I was at risk for BC. I'd been called back for suspicious findings after most mammos since I was in my late 30s, and my mother's sister died from BC after a mastectomy. I made up my mind over 20 years ago that if they found BC in me, I was not giving it a second chance with my breast tissue, and I would avoid rads and chemo if at all possible. I considered lumpectomy and rads for a few days after my diagnosis, but when my MRI came back with suspicious findings on the right side also, I knew what I needed to do. I'd had my breasts long enough.
I think my surgeon wanted to do lump and rads, then in 6 months do lump and rads on the other side, then maybe another lump and chemo later, and maybe eventually mast. It seemed to me that his way would have cost several hundred thousand dollars before it was over, where my way cost $15,000 total including my money and the insurance company's, all for the same outcome...if the cancer didn't spread and kill me. This way I have less than 1% chance of recurrence, and Stage 0 LE. Of course he assured me that I wouldn't have any chance of LE. But then he told me he hadn't removed any lymph nodes, except maybe "1 or 2" in the breast tissue. Imagine my surprise at reading the pathology report after a year and discovering that I'd had ALND 12 nodes on left and 9 nodes on right! No wonder I had so much nerve damage and pain.
All that considered, I would not change my decision, except for getting another surgeon as soon as he revealed that he didn't mean it when he said it was my decision. He really didn't want to do my surgery, and I shouldn't have let him touch me again. Live and learn. I still haven't gotten quite past my anger at him, but it could be so much worse, so I try to stay in the present and not look back too often.
Dawn
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I don't even have to think about it. I KNOW that both my BS and the plastic surgeon I met with (when I was considering recon.) thought I was crazy for not doing recon. Their attitude was, "You're so young, you need to do this." It was very obvious that breasts, even fake breasts, was very important to them, and should be to me. I don't think it's a 'man' thing...my husband has a very realistic attitude about it. I just think it's a 'shallow' thing. Don't get me wrong - I'm not saying women who do recon. are shallow...women who WANT to do recon. for themselves should do it, be able to have good options, etc., and should be able to have implants without pain and problems. Heck, having bc is bad enough. If you want boobs, you should be able to have them. I just got the sense that both of these men could not imagine a 40 year old woman choosing not to have boobs. I don't think anyone has the right to tell us what we ought to do, and I really resented them both pushing me into a direction I didn't want to go, and I told them so. The other thing that really bugged me was that the PS made out like the procedure (I didn't have enough fat to put on my chest from my abdomen so I was going to have to do the dorsal lat. flap thingy, he said) was going to be no big deal. He described it, I saw pictures, and it looked like a freaking nightmare. Hey, I would love to have boobs, but not that bad, dude.
I just wish there was a way to re-route my LE into my chest so that I could have LE boobs instead of LE arm and side.
Why hasn't anyone come up with this?????? -
I love it when Suzy makes brownies!
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Ugh, Lowrider, I love them too, but hate when I use them for emotional therapy...I have really been abusing brownies today. I feel like 'pop n' fresh', to quote a Glee character.
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The first PS I saw NP told me "if you were my sister I would recommend reconstruction at your age" when I told her not having reconstruction was an option. At the time we thought I was only doing an MX and I still did not have tummy or back fat for even 1 breast. There was talk of taking from my back if I had rads.
My current BS totally understands where I'm coming from. If we can't get the implants to work then I'm going without. He understands I don't want any additional scars on my body. Seriously I have a great looking back. I can still show off my back.
We be starting up again at the end of the month. Still hope it works out but if not I'm prepared to get foster girls instead of permanent adopties.
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lago - Your only options for reconstruction are not just from your back - although I totally understand not wanting anymore scars! All the surgeons around here could only offer me implants, a TRAM or a Lat flap. Well, my implants failed. Initially I thought I would just live without... but I was miserable. (I didn't realize how bad off I was until I started to look into reconstruction again and had to fill out some paperwork that asked all kinds of questions about my self esteem. It had gone down the toilet. LOL) I refused to let them use any muscle from my stomach - so there went the TRAM, and there was no way in H*ll, I was letting anyone touch my beautiful back. LOL So I went to New Orleans and let them take it from my butt. No loss of muscle, my love handles are gone and I love my two new "girls". Anyway, sorry, that was off the subject, but just wanted to let you know (although I am sure you already do - and I understand whatever decision you make) that there are other options!
So, back on task here. I am so glad that you posted this. I have been known to look back with "should haves", "could haves" and "would haves". They are hard to deal with. And my biggest ones are always decisions related to my lymphedema. Should I have foregone rads? Should I have worn a sleeve to that step class? Should I have wrapped more? Should I have sought out a better LE therapist rather than trying to do things on my own? Should I have gotten a tummy tuck? LOL (I didn't for fear of what it would do to my LE, but now I wish I would have just gone for it!) I beat myself up a lot for decisions I have made. But you know, we do the best we can, given the information we have at the time. Yes... a crystal ball would certainly come in handy when dealing with LE issues!
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Nordy--I'm right there with you in the blame game, and I blame myself for everything, when clearly it was a group project.
I'm so glad this thread was created, it really helps.
Kira
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Nordy I know there are many other types of reconstruction procedures but I don't have enough fat on my belly (even for on breast) or my back. All the other procedures require microsurgery which seems to risky… and to be honest I am not interested in putting on anymore scars on my body. Here is a list of all the different types of reconstruction (except for the brava/fat grafting):
http://www.drmarga.com/drmarga.html**This is not my surgeon.
I got lymphedema pretty early… after my 4th chemo (3.5 months after surgery)… or at least that is when I noticed a visible difference. I don't believe there was anything I could do to prevent it other than not get my nodes removed. It was pretty unusual for me to have clear nodes with the size and aggressiveness of my tumor. I still feel the BS made the correct decision. His entire office was surprised when my nodes came back clear.
I'm still not sure if I don't have lymphedema in my right arm where only 4 nodes (sentinel biopsy) were taken. Some people are just more likely to get it.
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