Not Buying Into It
Comments
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pompeed, many women still jog miles and miles while in active treatment. Now, if you were to do reconstruction you would, perhaps, be layed up for a little while, but not six months. And surely after you recover you can ride as much as you do now.
What would your horses want you to do...treatment or no treatment?
We'll ask the horses who want you to do all you can to beat this thing to raise their tails. I bet all tails will be UP! -
Hey Jan508. Always nice to know more North Carolinians.
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I was told to take it easy for 6 weeks. My oncolgist told me I could do whatever I normally did after 6 weeks as long as I felt ok doing it. I was good for 2 weeks and didnt lift heavy items but I was back doing the same things pretty quick. Of course everything is within reasonable limits. I also think someone mis spoke and said months instead of weeks. Honestly alot of us do what we want anyways LOL.
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Pompeed - maybe this will help. You sure don't want to leave cancer in your breast. And, forgive me if I'm getting this mixed up, but I think you said you have DCIS. I had an excisional biopsy (same thing as a lumpectomy) and it wasn't clear. And there was no guarantee it would be clear a second time. Forget that. I opted for mastectomy w/no reconstruction to get it over with and not have radiation. (granted some people need radiation even after a mastectomy but that's usually because the cancer is near chest wall, etc. The majority don't). My tumor had both DCIS and IDC and I'm pretty convinced the DCIS had been in there for some time and turned into IDC (undetected btw via mammograms). My point is surgery recovery is a blip in time compared to your whole life. What if you needed an emergency appendectomy? Look at it like that - you'd have the surgery, recover & get on with your life. You should be able to ride horses or compete athletically in any sport, etc. And, unless you've already had the oncotype test, you or your docs don't know if you actually need chemo. So, I'd take one step at a time. Hope this helps.
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Pompeed- hmmm... I didn't stop riding or carriage driving during my treatment (lumpectomy, chemo and rads). I do both now strictly for pleasure (my choice, not due to BC), though I showed CT, fox-hunted side-saddle years ago and had my own breeding business for awhile. I also advised 4Hers and was a DC for USPC. So, pretty active all my life with horses though never pro. Sailing always got the better of me when the summer rolled around (still does).
One of the gals I ride with had a recent mastectomy, and is already back in the saddle. I don't think she had reconstruction though. I've been told that could delay getting back to riding a bit more.
What are your concerns with "riding really well again" after treatment? Balance, strength, coordination...all of the above? As a former pro I imagine your drive/ambition/competitiveness, etc. are influencing your outlook a bit on life after BC. There is at least one thread in here that deals with horses. I know there are lots of women in here that have had horses in their lives and continue to do so, many of them mucking their way through it (literally & figuratively).
It's hard to offer up thoughts on your concerns when I do not know the stage of your disease (I'm a skimmer in here). I don't mean to sound insensitive, but are you saying you'd rather die riding well, or risk treatment and live riding poorly? Is your love of horses more than your love of life? Or, are you saying that you are willing to take your chances on beating this disease with your current beliefs? Again, it is not my intention to sound critical; I'd agree with your decision whatever it may be because it is *your* decision. I could see a Stage 1 or 2 being in a better position to gamble than a Stage 3 or 4. Still boils down to individual choice though.
In the final analysis you are the only one who can decide what is best for you. When I was first diagnosed I cried every time I went out to the barn or looked at some of the great DVDs I had made of all the places I'd gone with my horses (from KY to ME). So, from that standpoint, I think I know what you may be feeling: despair, fear, uncertainty, hopelessness--- anger.
Eventually, I came to resolve. When I reached that point I gained hope. Maybe my life *wouldn't* be a mere shadow of its former being (I was, and remain, a very active individual). I didn't think things would ever be the same for me wrt horses, once treatment was over. I was wrong. Maybe there *was* some bright light beyond all the darkness!
You get what I'm saying. Perhaps your resolve has taken a different form than mine: no treatment because you feel it will render you a less effective rider and there are no guarantees of success. Yeah, that s*cks (the no guarantee part) but personally I'd rather have the insurance (treatment) than the bill (reduced life expectancy).
I bought a ring that says"One day at a time". I'm not a sappy sentimentalist (more a fearsome realist) but that ring (I wore it everyday for awhile) helped me to keep things in perspective. You have clearly given a lot of thought to your situation and, like many horsemen, have strong opinions on the subject.
This post is a bit disjointed & rambling. Sorry for that; some things are hard to express in an online forum. I'm about to head outside and ground drive my pair tandem; that is my next challenge horse-wise. Perhaps you could start a thread on horses after BC tx. I'd bet that there would be other gals in here that could shed some light on just how different things might (or might not) be after BC.
Gotta run. My head is splitting (I get migraines), the horses are calling and the day is passing. Have to be back in soon to watch my favorite quarterback at 4!
OK--after much review I am going to push the Submit button...
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hhfheidi, that is a wonderful post.
I don't know what Pompeed will say if or when she reads your post, and I don't know if it will make any difference in the way she is thinking. But, thank you so much for offering a viewpoint that might connect with her.
I am no longer a "horsey" person (I was in a previous life), but I know and have worked with dozens of women who ride, show, and train horses. Several of those women have gone through what we're going through ... and I can't think of a single one who either declined treatment because she thought it might interfere with her ability to ride, or found that her treatment had a permanent impact on her ability to ride (or show, or train). They all continued to do what they enjoyed doing, except perhaps for a brief time-out to recover from surgery or a few days off during each round of chemo.
I've been following this thread since its beginning, but I haven't commented until now. I just have a very hard time figuring out what to say to someone who has concluded that her future will either be black or almost-black.
hhfheidi, you are right -- all we know at this point is this: Pompeed had a lumpectomy, which revealed "relatively early"-stage cancer but left her with DCIS on "three of five" margins of her tumor. So, a re-excision would be in order, if not a mastectomy. A lumpectomy is followed by radiation treatment, if the standard protocol is used. Also, there apparently was "one sentinel node with a few 'isolated' cells in it," which is a controversial subject and may or may not warrant additional treatment. We don't know what else Pompeed knows (ER, PR, HER2, size of tumor, multiple foci, etc.); and those things obviously would impact the treatment recommendations.
We all know that waiting for information is one of the worst things. Knowing is easier, because then we can make a plan. For some people, any level of uncertainty is unnerving, and the inability to control what's happening to them makes them very angry. I am like that -- I fired my first onco after he declared that I "read too much", and he would be the one evaluating the results and making the decisions for me. No, thank you -- this is my body, and my life. I'll be happy to listen to your advice, and I need your knowledge of test results and treatment options and probabilities; but ultimately, I will be the one making the final decisions. I am in charge.
So, I guess it's the hopelessness of Pompeed's posts that gets to me.
"I am given statistics and probabilities like the game of baseball and I have no control over the end result at all. It seems all guess work." But, that's the whole point! Those statistics and probabilities tell us what our chances are, if we do "X" versus "Y". If we can live with a 17% risk of metastasis if we decline chemo, then fine. (I couldn't.) If we want that 40 to 50% relative benefit from estrogen suppression or blockade, then we'll have to figure out how to deal with the SE's of the drugs (which have their own likelihood of occurrence). Like a baseball manager looking at the stats of the pitcher his team is facing, we weigh the odds and we decide what to do.
"And it seems that the chances of riding really well again after all kinds of surgery and therapy are very, very slim." Where in the world is that coming from??? This is breast cancer, not osteosarcoma of the femur or a brain tumor. (It could become bone mets or a brain tumor if it isn't treated, and that would eventually cut back on the years of "riding really well again".)
"... do the recommended treatments, which are likely to get me to my mother's age [80?], knowing that if I do what is recommended, I risk never being able to ride well again.
Wow. I don't know what recommendations might be triggering that gloomy outlook, or who might be offering them ... but if I was hearing something like that from my docs, I would be on the phone looking for better docs. <sigh>
otter
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Depression can govern a lot. I wish I could say something to help Pompeed, but you cannot argue or try to reason with depression. All I can say at this point is that whatever she decides to do or not do about the cancer, she should at least give herself the benefit of making that call in a more balanced frame of mind. I am not going to question her attitude or criticize it simply because it is not what I believe to be the case. Nor will I parse out her statements about riding, because I think 100 riders might disagree anyway. Depression can take people to places the rest of us do not know exist.
I used to make the mistake of thinking that most of us are rational beings. We are not - and honestly, thank God for that! I see a lot of emotion on Pompeed's posts. I am very sorry for her and, at this, point, I hope that she takes care of her mind first before she makes any decisions about her body. It is not something to be understood or criticized. There are many well meaning posts here that miss the point and assume that Pompeed is in a position to weight the facts coldly. I wager that she isn't and that her first concern is that. The cancer can only be dealt with later.
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Pompeed,
It seems that you are an extremely intelligent person, who very much wants to have complete and total control. You research extensively and determine what is the best path for you.
You made a comment, "false hope and airy fairy thinking are not for me". And this really bothers me. I do not feel the thousands of women who do choose to get treatment for BC can be categorized this way.
I do not know what stage you are, I do know that when I was diagnosed in early 2009 that it was absolutely a fact that I would die within a few months without aggressive treatment. I had a class of students half way through to graduation. I decided to continue working AND to start aggressive treatment immediately. Starting with WEEKLY chemo for 7 weeks, radical mastectomy, then another 7 weeks of weekly chemo, then several months of daily radiation. I did not miss ONE class, not one day, and saw them on to graduation. I also traveled to see family, continued with a total remodel of the house, and did all the things that make life worth living. (Of course, my DH was extremely supportive, caring, and there every step of the way.) I have continued and taken another class of students through to graduation. Work was 60+ hour weeks for me.
I was initially told that even with treatment that I would not live for longer than 18 months. Well, I am still here. I also need to have control - and did research - and made decisions that were not the ones that the doctors gave. When I disagreed with the doctors (I work in healthcare.); I took my research to them and said "this is what I want to do". Yes, some treatments were hard, SE were really bad on some days - one step at a time, one hour, one day - I got through. Most importantly, I continued to LIVE fully.
I guess what I wanted you to know is that I NEVER felt at any time that I could be categorized as someone with false hope and airy fairy thinking. I faced the crap head on, eyes wide open. I came here to the boards when the going got tough to get help with making it through the treatments - and I found that help. Here, not in the medical community, but HERE from others who had been there and knew what helped. And I could not say of any of the wonderful people here that they were holding false hope and had airy fairy thinking.
I did finally decide to "retire" from work - ONLY because there are other activities that I feel are far more important to me right now. I want to be with my family, and go fishing, and grow a garden, and play with the grandchildren, and build a cabin in the mountains somewhere on the coast. Lots of dreams that I am not going to put on the back burner and forget about just because I have BC. I can not accomplish these dreams while working 60+ hours a week.
But most importantly, I am still alive!, and I do have the ability to set out on this journey and make these dreams come true BECAUSE I decided to face reality and BECAUSE I decided to do the treatments. Yes, treatments will continue the rest of my life. And when they get tough, I'll come here for help to get through them. And then I'll go see my grand daughter dance, or can some peaches with mom, or just look around the table at Thanksgiving and wonder at the incredible life I have.
When that day comes, I want to be able to say "no regrets" -
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Pompeed, Put your big girl panties on and suck it up. No one ever said life was fair. You have pouted and complained. Now start dealing with your breast cancer insead of letting it defeat you.
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1Athena1- do we know for a fact that Pompeed is clinically depressed? Maybe I missed that. At any rate, though I agree depression can be (and often is) a factor in BC, I'm not sure it is the causative agent in Pompeed's situation. Fear, anger, denial perhaps; who knows? In any case she is the only one able to chart her course. I wish her clear sailing (and agree with much of what has been said in here already).
At this point, I will probably opt out of further comment, as I/we have no idea if we are helping or hindering her situation.
Pomp-- twenty minutes of decent ground driving in tandem!
BTW- that's my father/son pair in my avatar (bred and trained by me). -
I guess it comes down to whether or not a person believes there are fates worse than death. If no, then the decision-making process is pretty straightforward. If yes, then it's a little more complicated.
This passage is from a book called Steppenwolf by Hermann Hesse...
"He gained strength through familiarity with the thought that the emergency exit stood always open, and became curious too, to taste his suffering to the dregs. If it went too badly with him he could feel sometimes with a grim malicious pleasure: I am curious to see all the same how much a man can endure. If the limit of what is bearable is reached, I have only to open the door to escape."
This idea has helped me a lot over the years. Thinking something is worse than death isn't enough, there needs to be proof. It's basically an argument for trying other courses of action first (easier said than done, I know). Death will always be there, other options...maybe not.
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Just have to jump back in here, and state that after I decided on my treatments and surgeries, I regressed and asked by Breast Surgeon what will happen if I decide not to do anything.
She said I don't think you will be happy with the results. The cancer will probably progress, first to your bones, then to your liver/lungs and then possibly to your brain. It won't be fun, and will probably be a whole lot worse than what you will go through with the mastectomy and chemo--
Well, that gave me pause to reconsider the whole treatment thing!
So, here I am, about three and a half years later, and I am truly happy I went down the "path to hell' and am still here kicking and alive, and enjoying the children, grandchildren, and all the other wonder parts of my life!
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Kitchen Witch:
Thanks for your note.
Riding and all of what goes with that is what keeps me sane. My professional life is very stressful and I go to the stable to escape the world, exhaust my brain and my body doing my work there and then return to the world refreshed. It's a refuge as much as it is anything else.
Only two choices:
Another round of surgery to try to get the rest of it out (if that is even possible -- its DCIS so the surgeon has no way to know where the margins are when she's cutting) and then rads for sure and one oncologist says chemo. We're talking months if I take this deal.
OR
Another round of surgery for a mastectomy and reconstruction. Plastic surgeon isn't signing on to any riding until well after the implant is put in and healed. We're talking months with all of that business of the expander and a surgery after that to put in the implant and then more healing time. And then maybe some chemo too if the oncologist has her way.
And the stable and the swimming pool are the last places any MD is going to send me with the possibilities of infection during the reconstruction scenario. I won't get to even see my horses and, because I have metabolic troubles, I'll turn into a whale without the regular exercise I must take to keep myself in riding shape.
And during all of that -- either choice -- I have to keep working and earn a living. Otherwise, I might as well sell the horses right now and take up checkers.
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Althea:
Oncogene test: "If the test had been A, then chemo would have been of very little value; if it had been B, then it's of great value; but it's C so you're in unknown territory because we don't really know what that means in terms of probabilities."
How much they don't know. Ain't THAT the truth!
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Janet:
I get the one step at a time.
My problem is making a plan in advance. Because it seems that every step is a road without a back track.
Don't want rads? Mastectomy is your only solution.
Don't want a mastectory? Want some more surgery? Then be prepared to live with the cosmetic result -- not pretty at all -- and then rads as the standard of care.
It's not like a hot appendix. There's only one choice -surgery -- and it's a complete and cure for a hot appendix. It's gone, it's done and there's no future risk at all. No testing to see whether it grows back. It was an overnight in the hospital, the scars are so tiny I can hardly find them and I haven't thought about it since.
I'm sure we all wish this cancer thing was just as simple and as effective.
I realize I'm not the first one to face these choices.
Heidi and Otter: I read your notes and am thinking. And I was just starting a ridden tandem for an exhibition when this all hit the fan. Did that as a kid in a quadrille of at least 16 horses and usually 24, two per rider. Lots of fun.
Scutters: I read your note. What I don't want to get sucked into is what happened last week: "Oh, heavens, you'll be fine. Everyone I know who has gone through this is fine. No need to worry, just a little bump in your road. It's so much better than it was twenty years ago. It won't be painful. It will be over before you know it" and on and on. This, to me, is airy fairy thinking and propaganda. I'm with you: I want cold, hard reality. Not buttered toast points.
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HeidiToo - Your points are well taken and I agree - I will withhold further comment. I am now feeling that we are all falling over ourselves, pushing and pulling (trying to help) and going nowhere. I'm glad that we tried; it shows the calibre of the sisters on this board.
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Pompeed, I have DCIS. I have never, ever heard of DCIS requiring chemo as part of the treatment. It's lumpectomy + rads (and often/usually 5 years of tamoxifen) or mastectomy. Sometimes it's mastectomy and rads (and unfortunately I am very afraid I will wind up in that small camp, but.... well, that's *&^&S%# life).
DCIS is non-invasive. That's why no chemo. It does not work on non-invasive pre-cancer. I recommend you check out the DCIS board here if you haven't already and read (if you want to) anything by Beesie, who is a very good researcher and explains things well.
I can only tell you where I am -- my life has an unusual number of amazingly stressful factors -- so this is pretty much the last thing I need. At the moment, facing mastectomy and choosing reconstruction options and trying to brace myself for also needing rads (which most women do not, post-mastectomy), I am trying to just figure out things I want and how to get them.
My gut feeling is no way would you have to give up riding for 6 months. Chemo?? I'd go for another opinion. And do check out Beesie for explanations on this. It's the one thing I am very certain of.
Also - you've had one lumpectomy? I've heard of quite a few women who had one or even two re-excisions and got it all that way. I was just... unlucky. I am still glad I had the three smallish surgeries. I have big breasts and could sort of afford it.
It is wicked frustrating how much uncertainty there is in this, but... the thing with DCIS is, even though the treatment kind of sucks, the cure rate is VERY high. I don't feel my life is in danger. If you have DCIS, I don't see why you couldn't have many years ahead of you, packed with riding.
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Pompeed, if you have a mastectomy you do not have to have reconstruction. I had a mastectomy, but opted out of reconstruction because I didn't want implants under my pecs or to cut into a perfectly healthy part of my body (DIEP, for example). I was and still am quite active - rock climb and hike - and the desire to be able to do so played a big part in my surgical decisions. Don't limit yourself by thinking you have to have reconstruction.
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Pompeed, first of all... I totally get what you're saying. And I personally declare that EVERYONE who gets a breast cancer diagnosis has every right to a pity party complete with loud screaming, whining (or whinging depending on where you're from), crying, and stomping of feet.
But may I be a voice of reason for a moment? You said your diagnosis is DCIS... DCIS is not life-threatening. You are not going to die from DCIS. If I were 60 and had DCIS, I would be mightily tempted to take my chances and not do any of the recommended medical treatment beyond perhaps a lumpectomy. (As it happens, I am 39 with DCIS remaining after a lumpectomy and a reexcision, and since I want to have a baby and I am ER+, I've decided it must come OUT.)
I don't want to diminish what you're feeling... I'm going through a massive pity party myself about the mastectomy I don't want to have... but I would gently suggest that statements such as "I am willing to take the time I have to enjoy what I can enjoy and let it go after that" might be considered insensitive to those in an advanced stage of cancer. If you choose not to do Tamoxifen or radiation etc., you're not going to drop dead next year from DCIS. You may live to be 95. I plan to live to 95 without doing Tamoxifen or radiation!
BTW, I don't happen to agree with you that prevention isn't possible (the sharp rise in cancer in the last 100 years can't possibly be explained by genetics, so it must be what we're eating or exposing ourselves to), so I am very aggressively attack any chance of recurrence with diet and lifestyle.
On the complementary/alternative forum, we were just talking about how many of us thought we were living a perfectly healthy lifestyle, but have since learned so much that we could do differently.
Now that I've corrected those things, I'm not only confident that I'm giving myself the best chance for lifelong good health, but the "side effects" are wonderful... the depression, insomnia, ADD, extra few pounds that had crept up, etc. have all melted away. It's a much more positive way to deal with thinking about this than just "It's all pointless, there is no cure, there's nothing we can do, we all may as well drink ourselves silly and wait for the inevitable"... don't you think?
edited to add: lisa-e has a good point about mastectomy without reconstruction. Also, they are coming out with new reconstruction techniques that don't involve cutting of muscle/tendons or implants. I'm going to have a technique done that involves no incisions, just needles, and my breast will be re-created using liposuctioned fat from elsewhere on my body. That's only available in a few areas right now, but my point is that new things are happening on the reconstruction front... as an athletic person, I personally would rather be boobless for a little while if it meant a more attractive option for reconstruction just around the corner. Don't think that you're limited to what your current doctor told you are the only options reconstruction-wise.
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Pompeed,
I'm going to deviate a bit off topic, but we have a great horses thread here where you can share your love of riding. We have many threads that reflect our diversity, and supports our passions. I am a swimmer, so that's where I go to find sanity
Traci
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I just watched a documentary entitled Breast Cancer Diaries and thought I cant believe I did that. A lumpectomy, chemo, double mastectomy (my choice), 25 rads, hormornals. If you are going to fight you have to give it all. A sacrifice of ione year has gained me 3 1;2 years and I am not ready to go yet. Take care.
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amoccia53160: I am very troubled by your blithe, tough-love tone. I think we are all adults here. I think we all know life is unfair. I I've learned one thing through many years of various miserable medical struggles (my own and my family's in general): that people are capable of quite a range of responses. Some people find deep comfort and satisfaction in religion. And other people really, really hate being told, "It's God's will!" Some people just carry on; and others really freak out and cry a lot. There's no right way or wrong way. I'd hope the one thing anyone could find here is support and advice. And some of us like cyber hugs and some of us don't.
telling someone who is experiencing a period of terror and deep anxiety about the future to "suck it up" seems a response more suited to a queen bee alpha girl than a supposedly supportive comrade on the breast cancer board.
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nevermind
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All I can say is wow....I usually avoid reading the negative posts. I honestly believe a positive attitude changes everything. It may not be a cure, but if one goes through life expecting the worst, that's usually what one gets. You can certainly will yourself to feel worse.
I had a double mastectomy and got tissue expanders Friday, Oct 15 and was back to work the following Monday. I have been in very little pain, just uncomfortable the first week sleeping. My boobs look a lot better than I expected. I see the oncologist this Friday, and expect I'll be getting dose dense AC followed by T.
As for riding, my horse is of the iron variety. I was out riding last weekend. I am no equestrian, and have only ridden casually, but in my experience, riding an 800+ pound Harley requires more usage of chest and arm muscles than riding a horse. Point is, you should be able to ride!
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Hands up if you want this increasingly infuriating thread to die (ducking for cover
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Athena,
Both hands raised!! :-) I just "unsubsribed" to the updates... time to stop reading it and wish everyone well with their decisions....
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Wow this thread is like riding a roller coaster, one day its up and the next its down, a lot of different emotions here, mixed emotions with love, support, and then anger, and sarcastic remarks, but honestly im glad that pompeed found this site and hope all of our remarks made some kind of impact on her descions, no matter what path she chooses she knows she can come here for whatever support she needs. God bless pompeed i wish you well (((((((hugs))))
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Thank you, Debbie.
In addition to three hours with the oncologist, the oncologist fellow, the cancer social worker and the breast cancer surgical nurse today, a lot of the comments here have been sueful in helping me see and weigh options.
Along with the public notes, one private message was very, very helpful, kind, thoughtful, sincere and calm. And the practical advice the writer gave me was good guidance.
The other private message which came was as mean spirited, unkind, callous and truly vicious as the first note was the complete opposite. I wondered why the writer used up so much of her own precious life's minutes beating up a stranger in private having already beaten the stranger up in public.
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Hand up....Pomp I hope you figure out what's best for you and that you have a good outcome. Hugs, Mazy
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Pompeed I'm glad you are talking with your team for guidence too. I too had a mean spirited person flog me once. I blocked them. You don't need these kind of people wasting your energy right now.
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