The idea of end-stage Desmoid tumors and the classification of Desmoid tumors being "Benign" is incredibly ironic... It's also ironic that you can have a type of cancer, which is malignant, but puts you at a very low risk of dying. If you understand the possible courses of Desmoid tumors you could imagine yourself as your vital organs and the desmoid tumor as a steamroller or that line of tanks in Tiananmen Square during the student protests of 1989, you being that protester standing infront of the 4 tanks, detaining them momentarily.
"Benign" has two general definitions: 1) Gentle; Kindly, 2(Medical Definition) harmless, not malignant.
So, how can a desmoid tumor be both "Benign" and lead you to an end-stage situation where the doctors tell you that there is nothing they can do?
I was intrigued by the beginning of a post in the F.A.P. group on Facebook:
Hi. Sorry, but this is a long post: I have just had my session with my psychologist and he suggested I chat with you.
And it continues:
I've got Gardners. I had a desmoid in my left rectus muscle removed and with the muscle also being removed have mesh there (2002). Now on the opposite side of my non-existant belly button
...interesting to read, since I've heard myself saying the same thing about my non-existent belly button; something that must have incredible psychological and symbolic importance for the person who says so...
I have both a good sized desmoid (who I named Harry) and a incisional hernia (who I have named Horatio). The desmoid has been around since 2003 and hernia since 2011 and it is getting bigger. Naming these 'things' helped me cope initially somewhat and tell myself that they are not part of me. But, since November last year, they have grown a little more and are more out there (there is no more they can do medically). The name calling is not working. I detest them. I have now purchased a hernia belt to try and help. Surgically I have been told that I am untouchable as they worry they will lose me on the table - unless I get a bowel obstruction which requires surgery, and only then will they deal with the hernia and desmoid (its in amongst the jejenum and blood supply to the bowel). I find it difficult to accept that they won't look after the hernia and desmoid unless they are pushed because I feel that my psychological concerns to me are equally valid as an argument supporting the surgery. But, anyway, I am currently working on accepting this and moving on.
Anyway, I really detest, hate my desmoid and hernia and that part of my body and find it very difficult to look at that part of me at all (including when dressed). I can be having a great day walking around the shops until I see someone look at my abdomen and then back to my face and then back to my abdomen and then all I feel is disgust and embarrassment and then self-hate because of what I have to deal with and how they make me feel. I immediately move quickly to the ladies bathroom and lock myself in whilst I either cry and/or try positive self talk to change how awful I feel inside. And the thing is, I don't walk around flaunting my abdomen - it's not there for everyone to see.
So, what I would like to know, from anyone dealing with similar circumstances, is how are you coping and dealing with this? what do you do? I write in a journal and I try and practice mindfulness and obviously I talk to a psychologist, but, still I have this unending deep level of disgust and hate for the impact of the hernia and desmoid and the area in my body they are situated.
Although I don't experience desmoid tumors, I felt that the reason for her psychologist suggesting she ask FAPers about how they think she should respond to the situation, or how do they respond to the situation is so that someone will offer a productive coping mechanism applicable to her situation... removing psycho-theoretic conjecture and educated guesses by someone most probably without any related personal experiences on the subject. How do we relate to the situation and cope with it? So I responded:
This is both a psychological and existential concern, meaning that your mental health is being affected by your philosophical perspective of the issue. However, the truth is that it has less to do with appearance and how people look at you than it has to do with what the desmoid tumors truly mean for you: Lack of control, lack of medical (and possibly community) support and what seems like an imminent risk of death... I don't know how long you've lived with the diagnosis of FAP or when the first surgery was performed. Nor what the doctors told you about your future... Of the 6 grandchildren of my paternal grandmother who died very young and passed down the APC gene to her only two offspring. Only my older sister was found "free" of the gene (although no one has talked to her about the possibility of Attenuated FAP). One cousin died of a Brain Tumor at the age of 16. My younger sister developed cancer of the Thyroid at the age of 26 and rectal cancer 17 years later... I have an osteoma just above my left eye which EVERYONE notices and my cousin suffers horribly from desmoid tumors. I'm certain that decades ago the doctors told him "you're fortunate, desmoid tumors are benignant!" But, with experience (as you have), he learned that they can kill you by destroying everything in their path... But, that's what living with FAP is about, especially when we realize that what we were told about the colectomy removing the problem and that we could live free of worries later was far from the reality we would discover after the 80s... The portal vein that delivers blood from the small intestine to the liver and the heart (delivering almost all of the nutrients your body requires) is the largest vein in the body. So, surgery in that region would be extremely risky. When I had my J-pouch surgery removing my rectum, with the rectum and the prostate being incredibly "intwined" (actually, what is intwined are the nerves that enable the prostate to perform it's reproductive duties), just before the surgery, I asked the surgeon about the risk of sexual dysfunction. He didn't want to hear that question and he clearly lied or exaggerated about his and his partner's surgical expertise and the risk of something occuring... Well, "they" made me incapable of creating children... Who knows? Maybe they did a favor for my future wife and unborn children... Maybe they saved my life (prolonged it) with the surgery. Maybe they exaggerated the risk of not having my rectum removed. We can't truly know... What would happen if we were born knowing and understanding the reality that our destiny could be death any given "following day"? That we knew that there are an infinite number of ways we may die and that death could be any moment between our first breath and our 110th year? No, you are not your desmoid tumor and your hernia... But, they are realities within you... and they very well are an active part in your destiny. There are things we must accept. It's true, you can look for a second opinion. Maybe another surgeon would be willing to perform the surgery. Hopefully they aren't looking for more work and more income (that is a modern medical reality; performing unnecessary surgeries in order to fill your surgical work week and for paying heavy debts). But, what happens if you die on the surgical table by an irresponsible or a concerned doctor? Death is a moment we all encounter. And, yes, I've thought most of life about the luxury of not having to worry about the impending... Does that make those people (like my mother) fortunate? Those who've never set foot in a hospital for their own illness and/or surgery... My mother will be 72-years-old this year... While she's ALWAYS been with us during our surgeries and the surgeries of ALL of our relatives, she clearly doesn't understand our suffering and concerns and often has responded as if we are hyperchondriacal and inventing our ailments... She told my sister that the lump in her throat was "in her head"... and then my sister was diagnosed with Thyroid Cancer... And, yes, it is possible that the concerns related to the clear unknowns of FAP causes hyper-sensitivity towards certain physical states making it seem that we are inventing our problems... But that is also true existential reality of our experience WITH OURSELVES... This is extremely personal and no one can tell you what to do, how to do it, nor what you SHOULD feel. And that's why I prefer focussing upon the existential reality... How much of this genetics is out of our hands? Sometimes investigating and changing diets and leisure-time and sleep habits and trying to be proactive is a way of feeling in control, hence feeling better about yourself... It could be a necessary distraction. But, it is also important to understand who you truly are as a complete human being, understanding that you are mortal and finite... I think it is very important to focus upon your true qualities; what makes you happy about who you are... focus upon what you truly enjoy doing in your life (as long as those things aren't harmful to others or self-destructive; granted, you could say, "what is the problem with being self-destructive if that's taking matters into my own hands at the same time creating momentary satisfaction/enjoyment, while FAP and the desmoids are destructiveness outside of my control?") Is there something that makes you positively different from others? That makes you important for yourself? If this year is the last year of your life regardless of the cause or reason, how would you choose to enjoy it and what is there to appreciate about yourself? We can't control our negative genetic reality. We can't control 100% the course FAP takes within our bodies. But we can see ourselves differently, in a different light... If this is the last year of your life, should you spend it destroying yourself mentally? Or should you focus on what is truly wonderful/beautiful about you and your world? What is the last thing you wish for those close and important to you to remember about you? Your strengths and your constructive contributions... What fills you positively, especially when you aren't thinking about FAP, desmoids and hernia? I hope this was helpful.
Since the woman who shared the original post lives in Australia, I didn't receive her response until this morning. Truthfully I was a bit surprised...
Thank you so much Ross for sharing so much; I read this last night and it really hit home. I couldn't respond because a great deal of what you explained so eloquently was how I have been feeling inside and had been stewing over over the years. I was first diagnosed in 2001. In 2002 they gave me 6 months - well that was what my parents were told. I made it through then and in 2012 was told bluntly it could be any given day. Quite often I say it is what it is. I am OK with there being no guarantee on where I will be one month one year etc from now since I am now used to the idea. I suppose naming these hernia and desmoids might have given me some distance from all that they are. The fact that they are different now to last year has I think shaken me and they have taken my focus from what I enjoy from who I knew myself to be
