Dear Jeepster88:

I'm sorry you have felt so alone and frightened upon the discovery of what's in your boyfriend's medical records. I'm so glad your boyfriend has stopped smoking and drinking and that he is feeling positive. Those are very big accomplishments.

I, too, read my husband's medical records and learned that the doctors can be quite selective about what they choose to tell the patient. We asked for medical records when we were going for about the 5th opinion in less than six weeks--because this Dr. was NOT giving us the attention we thought we should be getting. (The doc had removed a stage I carcinoma from my husband's retromolar region in Nov. 02, followed by 33 radiation treatments that ended Feb 03; various symptoms and problems persisted, but we were told it was too risky to do biopsy in my husband's mouth post-radiation. We opted to go elsewhere when months of being put off had us sick with worry.) At the new doc's office, we saw an otolaryngologist who gave us the bad news--recurrence--then he sent us to his colleague, an oncologist, to talk about the possibility of chemo before surgery.

There I sat with medical records from the first ENT in my hand and decided, why not look at these before handing them over? So I did, and I was not happy to discover that the first doctor had recorded suspicions about my husband's symptoms, had even written that the most recent CT (that we'd had done somewhere else and had taken to him to review) showed recurrence. He had NOT confirmed to us that there was recurrence. Was he pissed that we'd gone for a CT without his order? Was he being negligent by not ordering tests himself and was afraid to admit it? Even after looking at the CT, he told us he didn't know what to do for us and referred us to UVa medical center, which is where my husband is currently being treated for cancer of the hard palate, right tonsil, and several lymph nodes in the right neck.

I felt hurt, pissed off, deceived...! And my husband was sitting there beside me, and I had to decide whether to rant and rave about my discovery or save it for later, possibly just minimize it. I opted for the latter. I felt that he'd had enough to deal with without me getting him worked into a frenzy, but there was no way I could keep what I'd learned to myself. I waited until an opportunity to discuss it with him, and I tried to be as objective as possible. My husband was let down, of course, that this doctor he'd trusted with the first surgery and subsequent treatments had not been totally honest with him. He had taken a chance with his life, in our opinion, and we were upset by that. However, we also realized that what was done could not be undone, and thankfully we had acted on our own feelings and gotten the action required to move forward with treatment.

I sometimes still feel like I should write that first doctor a letter telling him what a mistake he made telling us not to worry and to "wait and see." He put us off for months when we could have gotten started with treatments for the recurrence sooner. I have "what-iffed" myself to pieces over this. I have ultimately decided that I am wasting valuable energy that could be better used to stay level-headed and healthy myself. I have done the whole running to the doctor and taking care of business thing you have done; luckily, I still have some personal time left to take off work when my husband has major surgery in a few weeks. But I'm still tired and I still worry, I just know I can't change what my husband's medical records say and I can't justify the first doc's reasoning for not being totally honest with us (and for being too tentative about doing follow-up tests when my husband's symptoms worsened).

I do hope you have felt less alone for the last couple of days after venting here...I see that your message is posted in another folder and you got several responses. I hope those were helpful. Please do not dispair. Just try to find something hopeful to hang onto until you know more about all the things in your boyfriend's files.

I know I have not said a lot to help you except to share my own story. I guess my message is you are not alone in this, but when a loved one has cancer is can sure be a lonely feeling sometimes.

Christine