Susan – delayed diagnosis

A volunteer at my church helped me find WebCafe and its forum. My bladder cancer has spread to my liver and lungs, maybe a bone. i was supposed to have a radical cystectomy this month (Dec. ’07), but we cancelled it after the MRIi report. Now, I’m getting chemotherapy (taxol and genzar). MVAC didn’t work for me. Radiation did shrink my primary tumor.

I am told my case is "difficult" because of the late stage of discovery/tur/diagnosis (Stage 3, fat invasive) the sarcomatoid variant, and now the spreading. I know it is difficult — I just want to be seen as important enough to try maximally to help and credible enough to believe or at least to follow up with tests based on my reports.

i feel well (most days) and am working as a college teacher. I am trying to finish up some writing projects and stay warmly engaged with loved ones. As a newbie on this forum, I was asked about my “first symptom” and this history evolved.

I am a 60 year old female college professor living in coastal Mississippi. I do not know what my first symptom really was because I have had bladder issues all my life. I have always had to "hold it" for extended periods on car trips because drivers just wouldn’t seem to stop to let me "go." For at least a couple decades I have been reporting burning and very scanty bleeding, thinking I had frequent infections. Sometimes it was an infection, sometimes not. I was puzzled when it wasn’t and discovered over-the-counter medicines than handled the symptoms in a day or two.

I felt some "pressure" for several years, but no one ever took the report seriously. I felt this, for example, when I tried to use the elliptical trainer at the gym.

After living in the Northeast all my adult life, I moved to Mississippi with my husband in 2004. We were both retired teachers at that point. I went to work again full time immediately as a professor in Mississippi. We now live on the Mississippi Gulf Coast. Starting in 2004, I had the misfortune to change primary care physicians several times in just a couple years. My doctors kept moving away or retiring. To each, I reported bladder burning, light, pink or red bleeding from urethra (not elsewhere) after intercourse….That dated back to 2004. In 2005, my city was hit by hurricane Katrina. We lost our home and its contents and lived in an rv (one we bought) for months. I had seen 2 different doctors in 2004, I also saw 2 in 2005. The medical infrastructure was decimated; many doctors left.

What I really do not understand is why, when I reported painful urination with blood to at least six primary care physicians and nurse practitioners starting in the 1980s, all but one seemed to act on the hypothesis that is there was no infection (even if there was blood), I was imagining it or we could "wait." The nurse practitioner who was trying to figure out what was going on
(I seem to remember the term "inflammation" and reporting some pelvic discomfort as well as there being some relatively minor abnormality in a CBC) left practice at the time of hurricane Katrina and I got back on the cycle of "waiting" with the new doctor (who soon retired).The third dr. did mention cancer but talked about waiting for several cycles of antibiotics
before sending me to a urologist. That didn’t happen because I got an emergency referral to a urologist when I was hospitalized.

In January 2007, the bleeding became continuous. I went to my present primary care doctor and was told that I should take antibiotics and see if it improved. I called back when the big clots started coming but was told (by a nurse) to just keep my regular appointment. I didn’t get to that appointment because I had to go to the hospital with "frank bleeding."  I got a referral to a urologist while hospitalized and had a tur after being transferred to a hospital repaired enough to do it. Pathology: Stage 3 high grade tcc with sarcomatoid features. Some tumor remained after tur. The tumor has invaded the fat. There was no clear lymph node involvement. Date of diagnosis: February 23, 2007.

I really think I should add this. Once in the hospital, I was asked if I was experiencing any anxiety. I think I said something like: "Who wouldn’t; anxiety seems reasonable when you are hemorrhaging." Later, when an MD strange to me did rounds, He asked: "Would you say your major issue is anxiety?" I remember saying very clearly and rather coolly, "No doctor, it is the frank bleeding that brought me here."

I wonder what I could have done to break through the assumption that I was imagining or overreacting to symptoms. I do tend to react to stress by extreme calm and I do tend to maintain a smiling presence. I am pain tolerant. (I used to have teeth filled without Novocain.)

A couple of times in the past, I have "acted more distressed than necessary" in the emergency room so as to not be disregarded (e.g., when I was having a tubal pregnancy rupture). And it worked to get me attention.

This seems profoundly ironic to me. Because I am calm and controlled, I am taken to be unreliable, overreacting or delusional?

I only hope some other people can take caution from my story. I hope some of them are in the medical profession.

It took a month to get me an appointment in Boston at Dana Farber Cancer Institute.  The Urologist contacted a highly esteemed Mississippi oncologist who contacted DFCI. I thought I was going for a radical cystectomy, but 4 cycles of MVAC first were recommended by the medical oncologist I saw at Dana Farber. After two cycles and unabated tumor growth, we switched to radiation + low dose taxol. I was in Boston March-July.
Then I went home to Mississippi to recover from radiation. I consulted with a surgeon in Boston in August who agreed to do a r/c in December. I went home, again, and worked and exercised but had no treatment from August to Mid-November. (I now wonder why I didn’t receive some chemotherapy during that time, but you cannot change the past.)  My pre-surgery mri showed mets (multiple) to liver, lung and maybe a bone in my back. Surgery was cancelled; the medical oncologist at DFCI recommended gemzar + taxol. I asked if I could have it home in MS. The doctor said yes; so did the oncologist in MS who had referred me to dfci in the first place. That’s where I stand.  As I said before, you can’t change the past, but I do think I should have seemed a good candidate for a bladder cancer workup before my “frank bleeding” episode and I wonder about a few other aspects of my treatment, too — I have noticed others being offered more options, but I now believe that the number and multiple locations of my mets explain my treatment recommendations. 

At least one more thing is on my mind right now, when I was up north, I complained about a place in my back hurting and pointed out the location. I asked about bone involvement, but the MD and NP I talked to didn’t think so. It now turns out that location is where the suspected bone met is located. I am at a loss to say why my reports a still being brushed off like this. (My mother almost named me “Cassandra.” I understand Cassandra was a prophetess of doom whose prophesies were accurate but not believed. Gee whiz, I am sure glad she didn’t name me that – or, on the other hand, maybe it would have helped!!!!)

I recently had an emergency room visit. I woke up with chest pain and, though it was tolerable pain, I went in because I thought it would be irresponsible to just die of a heart attack, if that was what was happening, without getting checked out. (I’m still feeling well enough to enjoy living each day.) The only findings they told me about that night were  EKG = ok, very low white count (I knew that) and high blood pressure. They also did chest xrays that showed several masses (provided more information that I had previously.) My medical oncologist pointed to the rounded shape and said that was usually more favorable.  I asked about surgery or radiation and the doctor said that there are surgeons who will “cherry pick” mets if there are only a few but that I have too many in my liver for them to “go for a cure” surgically. He said systemic chemotherapy — he is looking into adding one or more other drugs (e.g. carboplatin) – seemed best and dealing with the mets with radiation, etc as symptomatically warranted.  So far, I haven’t needed any pain medication. I think I’ll ask about biopsies and maybe some proactive treatment for the bone met (I do not know if cryoablation is only available in clinical trials for these). I also asked for and got a brain scan last week; no evidence of tumor, or lesions, malignant, metastatic or otherwise!

I do feel confidence in my current Medical oncologist, but my unwillingness to ask for a second opinion now also relates to my hope to work just one more semester because I need to do that to retire with health benefits. My work schedule would permit treatment any day of the week if done locally. Depending on how my first two cycles of this chemotherapy go, maybe I’ll use one of our breaks for a consultation at one of the other major centers I have identified as doing work that seems relevant to a rare, advanced case like mine. 

Relating lovingly to family/loved ones is hard. On one hand, I want us all to be realistic about my prognosis. On the other hand, I do want to fight to exceed expectations for my survival and quality of life. One thing though: I do not want to have to "give a history" of every appointment, pain, change, etc. before anyone will talk with me about anything else. I tell then I’ll report any really important new things, but that I’d rather share news and memories than have to relive my whole week for each of them, especially the uncomfortable parts. — "How are you feeling, dear?" “Fine” may be basically true at the moment, but never feels quite honest. I try to keep the edge off my voice when I say “I feel pretty good, how are you today?”

Right now, there is a positive "disconnect" between my inner peace, usually happy mood, and lack of major discomforts and the images of "my insides" with all those mets.  I am trying to enjoy the good time I have now, but those who love me are understandably somewhere on a continuum from worried to distraught and, I think, suffering far more than I am right now. Sure I feel guilty about that.

I hope that my attempt to share my story, incorporating the perspective of someone (just one person) trying to both enjoy life and be sensitive to loved ones’ angst, is helpful to somebody.

As you have probably guessed, I have some trouble believing that my story actually has happened to an intelligent, diligent person like me. I can see how my socialization at home helped me to fall into traps in the medical system and how events like Katrina contributed — but all told, it really is mind-boggling that it could go this far.