Oct. 9 Forum

islandgirlculebra said:

Oct. 9 Forum - Lack of Discussion.......

I can only assume by the lack of discussion about the forum that it was not very informative or helpful. Unless I'm missing something, the only things I remember LaCh saying were: they acknowledged that pain and bleeding occur after treatment but had no further comments; they discussed post traumatic stress, fear of the cancer coming back, and some other things that LaCh said did not apply to him, and they didn't seem to know much about cognitive impairment from treatments when he asked them about it.  LaCh did say something about interventions which can be helpful, but didn't go into any detail. I assume from his comments that they must have been focusing on emotional issues after treatment..... (Yeah, I had emotional issues during treatments and for about three months afterward - it was stressful and depressing to feel so bad.  But I, and I think most others on this board, got over all that and for the most part moved on.)  I had hoped they would provide some practical advice on the physical issues which most of us seem to deal with and for which we typically get the blank stare or "I don't know response" from our doctors, specifically:  females having problems with intercourse due to vaginal changes, ongoing bowel issues, pain and bleeding, hip stiffness and inflexibility, leg muscle stiffness, pain and inflexibility, lack of physical stamina, and as others have recently been discussing, cognitive problems post treatment.  From what I'm hearing, there was just more "politely ignoring" the existence of these issues.  Disappointing.  If anyone who attended the seminar feels differently, please chime in!!!!!  (I must say, THANKS to everyone on this board; you've given me MUCH more information about side effects then I've ever gotten from any of my doctors before, during or after treatment)......

I'll try to give a more comprehensive reporting of how it went. You're right, the pain and bleeding were acknowledged and that's about it. There was time spent on the shame aspect of anal cancer, also something that I don't feel since everyone has an anus, so what's the big deal (that's my take on it). The emotional issues were raised during the Q&A following the talk and by three people who sat on a panel at the end, patients who had been treated years ago, who related their experiences, talked in detail about the emotional components, which, to me, was a little counterproductive, since I had some pressing physical concerns and don't have time or energy or interest in cancer or ptsd triggered by cancer-treatment or in dissecting my innermost feelings about cancer. We came (or I came) seeking concrete information and solutions to psysical problems I'm having. I can tell you that a subtitle of the talk could have been sexual dysfunction and gynecological issues post radiation, as a lot of time was spent on that (the second presenter was head of the sexual dysfunction from radiation department or something like that). As I said before, one of my biggest issues at this point is an almost total inability to digest food because I have zero gut motility; it sits in my stomach and small gut for days and days and days. Once it reaches my colon, I'm good to go, but getting it down there is the challenge. That wasn't even addressed, which was why I asked the doctor in person at the end. It was during that two-minute discussion that she said that 5FU can cause motility problems. (In fairness, she was a radiation oncologist, so maybe chemo issues aren't her purview... but that's not much help to me).  Her response was  that there's a drug that can increase gut motility. Reglan. I asked about possible side efects from Reglan. One of them is tardive dyskinisia. That's not a side effect I'm even willing to risk getting, but to her, that was a worthwhile tradeoff. (No surprise; this is typically the attitude of western medicine; an acceptable trade of one problem for another via a pharmaceutical drug). For the first time (in my experience with the cancer) quality of life post-treatment was raised, which was initially encouraging; it was the overarching theme of the talk, but then it was the usual (to my mind). It was "take this pill and we'll solve one problem and cause another, and isn't that ok?" For female sexual dysfunction there were concrete suggestions made (moisturizers and lubes, dilators and excercises...not what you'd call new news, I don't think.) The digestive issues that were, basically, simply innumerated, gas, bloating, diarrhea, etc, were addressed in an equally superficial way; follow the rice, roughage diet, whatever you call it, stuff you can find off the internet.  Even if I had emotional issues from this, which I don't (just as I don't have emotional issues from the bout of pertussis that I had or my emergency appendectomy) who has the time or the energy to indulge all that when all I want to do is eat a real meal and not feel like I swallowed a dead whale and pay the price for the next three days while it creeps through my gut?  So, yes, a lot of time at the end (from the Q&A mostly) was paid to emotional issues. And to be honest, and no offense to anybody here, issues of anger over cancer are a head scratcher to me. Anger at whom? At what? This is life. Things happen, some are things that we welcome, some aren't, some we call good, some we call bad, some we deem fair or unfair, but that's not how life is.  There is no fair or unfair; life just is. Things happen. Then you deal with them. If they're things we welcome, we celebrate them. If they're things we don't welcome we call them unfair? This makes no sense to me, but that's just me. To waste time on anger aganst something that occured that isn't inherently fair or unfair, good or bad, consciously one thing or another... I'm sorry, but I just don't understand.  In any case, I have my own issues with anger but it's not aganst a disease without conscious intent; to me that's as logical as being angry at the pertussis (whooping cough) that I had. But yeah, I'm pretty well pissed at the doctors who withheld information from me, the doctors whose only goal was to cure the tumor and then call it a success without factoring in quality of life issues--because their job was finished...things like that.  I'm frustrated beyond belief at this point, I'm hungry but I don't dare risk eating, I'm exhausted, my mind seems to be slipping away, so yeah, I'm fairly well pissed. But not at the cancer, so I don't really understand that sentiment. So was the talk a waste of time? I'd say that no, it wasn't a waste of time for people who wanted information about sexual dysfunction--primarily, but not only, female dysfunction. I'd say that it was definitely worthwhile for those who are dealing with emotional fallout from the disease and/or the treatments and for those who felt or feel alone.  Feeling alone... well, you know, you can have all the people in the world to help you in concrete ways, give you emotional support, be an ear, and do all manner of things to help someone going through any kind of difficult experience, but in terms of being alone, you are alone. We all are. I have a friend currently dying of pancreatic cancer and there's no way that anyone can tell her that she's not alone in this, because despite all the love and the help and support, this is happening to her. Not to us. Support is support, helpful for sure, but each person who experiences anything in life, experiences it alone. For the rest of it, I think that the talk was well-intentioned but ultimately (for me) not very helpful. In any case, for those interested, more information is available from the group that sponsored it. analcancerfoundation.org. There was also someone who came down from Ottawa, who heads a group called Colontown. I think you might have to be on Facebook for that, but I'm not 100% sure so it might bear checking out. I hope that this offers a more explanatory view of what was covered. In fairness, this was the first event of its kind offered; maybe they're just trying to find their footing.

pializ said:

LaCh

I am sorry that you were not given the associated risks of treatment. I was. Not entirely, but of yhe main risks during & also of late effects. I think I mentioned at thectime, but I thought long & hard about going ahead. I spoke at length with my oncologist who never gave me anything but facts, no falsereassurances, & as the ttreatment area required in my case as more extensive than usual in her experience, she was as concerned as me, except 7t is my body of course. I guess, because I had that knowledge & did my own research expanding on that I was able to grieve for the old me. In fact, as they hooked me up to the mitomycin, I cried. But for me, it's so far so good. My body no longer works the way it did, & there are foods I can no longer eat,& some, not in the quantity I was prevously able. I suppose that having that knowledge & support prior to treatment meant I felt that I could trust. it was a collaborative approach & they helped me help myself. That has madea huge difference.

It's hard not to be pissed by what should have happened, but didn't, but I try to focus on what to do about it all. Yes, they should have been more forthcoming. They should have answered my direct questions with direct (honest) answers. But they didn't, so now I just have go put one foot in front of the other and try to deal with it. Hopefully, I'm done with any more intimate encounters with cancer, but if that turns out not to be the case, I'll certainly proceed in a different way the second time around, or maybe not proceed at all.  To tell the truth, I handled the physical challenges pretty well during treatments, and we all had them. What really undid me was my two oncologosts, medical and radiation. They remain the worst parts of my expererience. I haven't seen either one since I completed treatments, which creates a whole new set of problems. I tried to see a new, different oncologist several months after treatments ended to deal with the aftermath. He said that he had nothing to offer me, and in fact, wasn't sure why I'd come to see him (I was referred to him). He said, "You don't have cancer. What is it you want me to do for you?" So the biggest problems that I've had with this entire thing, outside the issues I have with the after effects of the treatments, are the doctors. I had a low opinion of them going in. Let's just say that they met and exceeded my low expectations.

mp327 said:

Doctors

I was very fortunate to have an excellent med onc, rad onc and colorectal surgeon.  I'm glad I went through treatment and am so happy to have survived these past 5 years with tolerable issues.  However, I'd like to relay one incident that happened at the time of my first post-treatment follow-up with my colorectal doctor.  After examining me, she took a few minutes to talk to me in her office.  She told me that everything looked good.  However, I asked her what would have to happen if the cancer came back, which I thought was a perfectly logical question to ask as a patient who had just completed treatment a few weeks earlier.  She looked me in the eye and said "It's not coming back."  I then asked "well, what if it does?"  She said matter-of-factly "then you'll have surgery" like it would be no big deal.  Don't get me wrong, as I think she has extensive knowledge when it comes to diagnosing and treating this disease.  But her attitude about having surgery, which would be APR, and that is was nothing to fear or be anxious about took me aback. 

So LaCh, I can see where you're coming from when you talk about your two oncologists.  I think so many of them truly don't know or care about quality of life issues after treatment.  As long as it's not them having to live with all of this stuff, they don't seem concerned.  I read an interesting article not long ago that talked about what choices doctors make in their own care when they get a cancer diagnosis.  Many of them (I don't remember the percentage) stated that they would choose NOT to undergo the very same treatments that they recommend for their patients.  The reason for this?  Pain and suffering during treatment, quality of life issues post-treatment, and poor outcomes in certain types of cancer.  It was an interesting article and if I can locate it again, I'll post where I saw it.

Now, all the above said, I will have to also say that my med onc and my rad onc seemed pretty concerned with my quality of life post-treatment.  I contacted my rad onc by e-mail back in January after my hospitalization for the intestinal blockage and he called me on a Saturday morning to answer my questions, even though he hadn't seen me for about 3 years.  Also, my med onc visited me in the hospital, even though he was not the one who admitted me and did it just out of concern and without charge.  Again, I have to say that I was very fortunate having had the doctors I did.     

Very interesting (and not at all surprising) that many drs wouldn't subject themselves to the same treatments that they recommend for other people. Maybe it's because they're aware of the information that they're withholding from those who ask (like me). Apart from my gastroenterologist, whose role in this was almostly entirely over after the diagnosis, I can say with a good degree of certainty that neither of my oncologists cared a whit about what happened to me after they were done with me, and only minimally cared during the time that they treated me. I'd be interested in reading the article you mentioned, if you can find it. The old adage, "If I knew then what I know now," aptly applies to my attitude. That said, as I mentioned before, my opinion of the medical profession, western medicine, and the American medical system in general was about as low as it could be going into this whole thing, and my experience only confirmed what I already felt. As I mentioned elsewhere in this forum, my father died from lung cancer after 18 months of pure, torturous hellish treatments with zero quality of life, then he died. My mother also died of lung cancer 10 years later, with a good  quality of life for the two years that she lived post dx. She chose not to treat her cancer.  To my mind, she did the best thing. I was mislead by the promise that this tumor is so treatable in its early stages. Well, yes, it is. But is what you get in exchange worth the cure? That's a determination that each person makes for him or herself. For my part, I can say that for me, no, it wasn't worth it.
  

islandgirlculebra said:

LACh - Thanks very much for

LACh - Thanks very much for your summary of the forum.  Doesn't sound to me like anything was shared that hasn't already been shared by survivors on this forum.  It's a shame you had such a negative experience with both your oncologists. I personally didn't care much for my radiation oncologist - don't think he cared about the pain and suffering I was enduring during the treatments, much less anything after the treatments. In fact I refused to go back to him for any follow-up visits - I was told I would never get more radiation if this cancer came back, so what is the point in going back. The chemo oncologist always seemed way more concerned about my general well being, although she never has much of a response to my questions regarding muscle stiffness and pain - I've come to the conclusion that she thinks it's just an after-effect I'll have to live with. She asks me about my sex life, as if this is something that can return to normal after treatment, which is something I'm beginning to doubt.  The colo-rectal surgeon is OK, he usually seems to be in a bit of a rush. I think his attitude is also the same - sorry about the side effects but it's just par for the course.... He is the one who figured out exactly what I had, when other doctors thought it was cervical cancer, so I'm thankful to him that I was treated for the proper cancer.  All in all, it seems that doctors either don't know or are not all that concerned about side effects after they get rid of your cancer. I've finally come to accept this. They are all human and, like many other things in life, they don't understand because they have not walked a mile in those shoes.  Unlike you, I am glad that I went through the treatments, although I'm living with some side effects, I still feel life is worth living, and I'm happy to have some more time with my husband, family, friends, and my precious fur babies, and to enjoy this beautiful earth and the joys of nature. I certainly do understand what you are saying about lung cancer; I had a former partner who suffered through 2 1/2 years after his diagnosis with the chemo and radiation; I wonder if, like your mother, he would have been better off to not endure all those treatments, since they told him from the beginning all they could do was slow it down........ Since anal cancer is supposedly curable through the brutal treatments we endured, I'm hoping it never comes back. That is all I can do at this point. I sincerely hope you can get some help with your motility issues, that does sound pretty bad.... My best to you as you continue your journey......Thanks again for taking the time to pass on the info. regarding the forum.

>>>>wow. exactly the same thing I did. Matter of fact, after the 2nd treatment, I wouldn't allow him to examine me. He wasn't real happy with me, but the best I could muster about that was "Really? Well, f---Y"

The chemo oncologist always seemed way more concerned about my general well being, although she never has much of a response to my questions regarding muscle stiffness and pain - I've come to the conclusion that she thinks it's just an after-effect I'll have to live with.

>>>>>>yes, and therein lies the problem: the cavalier way in which txs are dispensed and quality of life issues are shrugged off. Those are individual choices that each patient and ONLY the patient has the right to make, that is, whether it's an exchange that he or she wants or not;  a cure for "issues" and when a dr withholds information, that choice is taken away and made by someone else, in this case, the doctor. He or she doesn't have the right to make that decision for someone else and he or she (the dr) doesn't have to like the choice the patient makes but that's not his job; to like it or even to agree with it and certainly not to manipulate it towards one thing or another. The problem is exacerbated when the oncologist's only goal and defiition of success is eradication of the tumor. That's not my definition of success, but when a patient comes along and says, "Hey, wait a minute, you cured my tumor but you left me with a litany of problems that I didn't have before," that casts a shadow over that doctor's perception of what he's done and puts into question whether or not he's done something good for the patient. They don't like those questions. Or maybe they feel like the exchange is worthwhile and gratitude is in order. I don't know, I'm not in their heads, all I know is that there's a dichotomy between doctor satisfaction (or self-satisfaction) and patient satisfaction and I think that that bears investigation, if oncologists want to do a better job.

She asks me about my sex life, as if this is something that can return to normal after treatment, which is something I'm beginning to doubt. The colo-rectal surgeon is OK, he usually seems to be in a bit of a rush. I think his attitude is also the same - sorry about the side effects but it's just par for the course.... He is the one who figured out exactly what I had, when other doctors thought it was cervical cancer, so I'm thankful to him that I was treated for the proper cancer.

All in all, it seems that doctors either don't know or are not all that concerned about side effects after they get rid of your cancer.

>>>>>>>I agree.

I've finally come to accept this. They are all human and, like many other things in life, they don't understand because they have not walked a mile in those shoes.

<<<<<They don't have to understand it on an experiential level to have an intellectual understanding that there will be quality of life issues that follow this treatment, and that those ought to be carefully considered--by the PATIENT--before a decision is made.

 Unlike you, I am glad that I went through the treatments, although I'm living with some side effects, I still feel life is worth living, and I'm happy to have some more time with my husband, family, friends, and my precious fur babies, and to enjoy this beautiful earth and the joys of nature.

>>>>>>I also love nature, and I love my dog. There are pleasures to be had and experienced, for sure, but unlike you, I have no ties to people, so it's easier for me to say, I bought time for what?" Maybe I'll feel differently at some point; I'm nothing if not flexible to change..but right not, this is how I feel.

 I certainly do understand what you are saying about lung cancer; I had a former partner who suffered through 2 1/2 years after his diagnosis with the chemo and radiation; I wonder if, like your mother, he would have been better off to not endure all those treatments, since they told him from the beginning all they could do was slow it down........ Since anal cancer is supposedly curable through the brutal treatments we endured, I'm hoping it never comes back.

>>>It takes a strong patient to say, "No, I don't want treatment," since western medicine is all about doing...never about not doing.

That is all I can do at this point. I sincerely hope you can get some help with your motility issues, that does sound pretty bad....

>>>>>thanks, I appreciate it. 

My best to you as you continue your journey......Thanks again for taking the time to pass on the info. regarding the forum.

>>>>You're welcome. As I said, maybe they're just in the process of

finding themselves, of defining their mission, I dunno. But most importantly,

as YOU said, you didn't miss anything by not attending, since all the info shared

there can be found on this forum, and then some. To anyone who has regrets

that they were unable to atend, I'd say the same. Everything offered there, is

offered here, in terms of concrete information.

Marynb said:

Doctors
I have to say that I was blessed with wonderful doctors! I can't say enough about Mass. General! Really great doctors and I feel so cared for there. It feels like my second home sometimes! It is a wonderful place, not that anyone wants to have to feel that a hospital is their second home! LOL

I never want to consider a hospital a second home, but that's just because my take is, "when it's over, it's over and I'm ready to move on so lemme outta here." That said, I understand what you mean when you describe feeling looked after, and that you have people who might happen to be centrally located (in a hospital) who care about you and your well being.  When I initially entered Sloan Kettering the other day for the talk that was given, I felt like the building was filled with people who might have an idea about those sorts of things. I'm sure that they do, but Sloan Kettering, I think, is about aggressive treatment for cancer, and it seems to come back to doing something, doing a little something or doing nothing, and the latter two options aren't something that Sloan Kettering does (I don't think...I could be wrong). It was the doctor's response to my question regarding very slow gut motility that  made me realize that  if I was looking for something that resonated for me, something that made sense to me, that Sloan Kettering probably wasn't the place that I was going to find it. I like sympathy as much as the next person, but ok, that's enough, now let's just deal with the issues.  As I said, I'm an odd duck, I guess.

islandgirlculebra said:

You hit the nail on the head LaCh....

 "Hey, wait a minute, you cured my tumor but you left me with a litany of problems that I didn't have before," that casts a shadow over that doctor's perception of what he's done and puts into question whether or not he's done something good for the patient. They don't like those questions. Or maybe they feel like the exchange is worthwhile and gratitude is in order. I don't know, I'm not in their heads, all I know is that there's a dichotomy between doctor satisfaction (or self-satisfaction) and patient satisfaction and I think that that bears investigation, if oncologists want to do a better job........

I THINK YOU HIT THE NAIL ON THE HEAD HERE.... They don't like these questions......... And it took me a LONG time to realize this......

If doctors want to serve their patients better than they are, I think that they have to start asking themselves some hard questions. To be fair, I think that a lot of the blame can be laid sqarely at the feet of our preposterously stupid health care system, which is simply a for-profit business, and doctors, the ones who make it profitable, and this, in large part, isn't their faults. But also part of the problem, I think, is that in our culture, physicians are lauded and elevated above the rest (how many professions have a special license plate designation? I don't know about other states but we have this in NY). They're taught this in med school and in our culture and I think that after a while they come to believe it themselves; they're different. They're special. They're the ones Who Know. Who wants to be second-guessed? And by a patient?  A little humility, a little uncertainty would go a long way and a greater willingness to listen, really listen, and to say "What are your concerns? What do you want? I'm here to help you realize what you want, and even if it's not what I think you should want, I'll help you attain what it is that you want." I don't need my doctor to care about me (it'd be nice but I gave up on that long ago and don't expect it). But I do need for him or her to serve me to the best of his or her abilities and that includes full disclosure of all possibilities and listening to me and to what I say I want. If that were done, I think that questioning their methods, scruples, their motivations and ideas of what defines success and what defines a failure might lead to a better outcome. And there are many ways to define "better outcome." But no, many doctors --not all, but many--don't like people who challenge them and ask questions, or patients who might not want what they think they should want.

db8ne1 said:

URL for article "How Doctors Die"

Here is the link to the article you mentioned:

 

http://thehealthcareblog.com/blog/2012/08/06/how-doctors-die/

 

 

good article, thanks. this was a link at the bottom, also good, from a patient's pov

http://thehealthcareblog.com/blog/2013/08/18/informed-refusal/

Marynb said:

Doctors
I have to say that I was blessed with wonderful doctors! I can't say enough about Mass. General! Really great doctors and I feel so cared for there. It feels like my second home sometimes! It is a wonderful place, not that anyone wants to have to feel that a hospital is their second home! LOL

I too felt and still feel blessed (maybe that luck thing again??)......although a bit hard to hear, and not much time at all to research, my team of doctors were all very upfront with long term side effects. The most difficult part for me was that there was some minor disagreements between my oncologist and surgeon on the need for my ostomy, (onc was not as convinced of the need), this was additional stress that I did not need at the time.It was decided to have a kind that could most easily be reversed later, yet is now a no-go. I loved my radiation team, and although I have no need for them at this time, I walk right past the office when I go for other things so sometimes stop by to say hello. We chuckle about how my rad doc was soooo hung up on folate, and although important, I was at a point of anything I could eat would be good. She was always repeating, "well I just don't know how you'll get your folate, what are you doing about that?" My onc has been very helpful with quality of life issues and seldom makes me feel rushed when I see him. The surgeon that treated me for anal cancer is a general surgeon and also did my breast surgery the next year and after that removed two large moles (one at no charge because he was supposed to do it when knocked out for the breast surgery but I had not signed the consent on that part and was out) I currently have no need to see him since I now am followed by a gyno-oncologist/colo-rectal team. I love the gyn but if have real concerns would consider my previous surgeon as I was tremendously happy with his style of practice. I see my onc that treated the anal cancer for follow-ups and though he from the start admitted he had not treated nearly as many patients for anal cancer as say breast, he is continually involved in new research projects. I do feel lucky, because had I had more time to research things before treatment, I can confidently say I would have chose these doctors and accepted the treatment I was given, yet I completely agree that there seems to be a serious lack of communicating known or suspected side effects of treatment upon initial diagnosis. As Laz stated, time is one factor, but its is an area that leaves room for improvement.

Marynb said:

When it is never over.....
LaCh, Anal cancer is one of the cancers with a very high cure rate and so I do understand your feeling that"when it is over, it is over". From my perspective, you were blessed that there is a cure.

Maybe if I hadn't been diagnosed with a second cancer weeks after finishing treatment for anal cancer, I would have been lucky enough to be able to say it was over and move on with my life. For me, and for many others, I cannot say that because I also had/have a cancer where there is no treatment other than cutting out growth until it spreads to organs that eventually take your life. So, for me, it won't be over until my life is done. If there were a chemotherapy that was proven to work for this cancer, I would take it in a minute, even if it meant losing a few more IQ points. I love life and I don't want to die young.

I spend a lot of time at the hospital, so for me it is important that I feel comfortable there!

LaCh, Anal cancer is one of the cancers with a very high cure rate and so I do understand your feeling that"when it is over, it is over". From my perspective, you were blessed that there is a cure.

********* agreed.... I was very lucky.

Maybe if I hadn't been diagnosed with a second cancer weeks after finishing treatment for anal cancer, I would have been lucky enough to be able to say it was over and move on with my life. For me, and for many others, I cannot say that because I also had/have a cancer where there is no treatment other than cutting out growth until it spreads to organs that eventually take your life. So, for me, it won't be over until my life is done. If there were a chemotherapy that was proven to work for this cancer, I would take it in a minute, even if it meant losing a few more IQ points. I love life and I don't want to die young.

******* I'm not eager to die just yet either, and yet if it's my time, I'm ok with that too.  I believe in the cycle of reincarnation and in the survival of consciousness after death, so whenever it is, it is. But I do hope that you find the long life that you want...

I spend a lot of time at the hospital, so for me it is important that I feel comfortable there.******* I  know.