Halloween day 2003 my boyfriend of 5 years was Dx Stage IV (T2 N3 MO) SCC of right tonsil and tongue base. Don is a 51 year old who quit smoking 3 years ago on Thanksgiving Day. Avid golfer, papermill worker for 33 years. We optained 3 differant opinions before settling on IMRT/Chemo followed by surgery to remove lymph nodes on the right side. He's been doing great with the treatments. No Nausea. Complains about not being able to taste anything. Dryness not a problem yet, he's had 14 IMRTs and 3 chemos. He only gets chemo on Tuesdays and only about 1/3 the dose someone being TREATED with chemo gets. They tell us the chemo is only to help the radiation work better, not really to kill many cancer cell. The mass on the side of his neck really started shrinking over Christmas (WHAT A GIFT) But he's gone from 206lbs to 192lbs. He's blame it on quiting drinking??? But what brings me to this board tonight is because he is 100 miles away and I just got his medical records in the mail. (I have a release)There are things in there that I'm sure he hasn't been told or he would have told me. I was able to be with him through all the diagosis, 2nd and 3rd opinions up to 200 miles away and all the early consults. I've burned all my personal time and now, because of logistics, I can only go to a few treatments. The PET on 11/24 impression says all we knew about the neck cancer and 2) no additional sites of metastasis. Treatment started 12/9 and a CT on 12/8 says bilateral pulmonary nodules, the most worrisome are a 7mm nodulein the left lung, along the major fissure, and a 8mm nodule in the right lower lobe. These could represnt metastases given the patient's history END...???? What? We were told that it wouldn't spread that fast! Why didn't the DR. speak any of this to us? Why haven't they done another PET to be sure these are benign? I will be calling the Dr tomorrow. Right now I'm just numb and scared to say anything to Don! It also says there is paraseptal emphysema. The neck CT says there is cancer into the musculature of the tongue(it was just surface)also invasion of the anterior margin of the right sternocleidomastoid and possibly the right jugular vein! Also irreg platysmas and digastric muscle(whats that?)Now a couple level 2 nodes on the left side (with irreg enhancement)Yes the rug was pulled out from us 2 months ago, but 30 - 35 IMRTs/8 chemos and a much less radical surgery than one of the opinions(jaw split,salvage from thigh, learn to talk and swallow again etc.)Things were supose to be fine! Now I'm scared and alone til tomorrow. We were convinced our only fear was reoccurance and he's been sooo good. He now quit his 6 pack a day habit. NO BEER. We're still holding out hope that he will be able to golf again. He's a 8 handycap. Any golfer's out there? Is this a false hope? They said there's a nerve involved with the surgury and that he may need to get therapy to re-train the muscles. Not that golf is more important than life, but that was always so much a part of him, it breaks my heart to think. I don't want him to give up but I also don't want to give him false hopes. He's pretty optomistic and thats GREAT but how do I keep him from getting depressed when things aren't quite the same? This latest CT really has me scared but it was a day before treatment started. How long before they "peak" at the progress? PET, CT, or scope? I really need something to go on here. Any comments apreciated!

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

Thanks so much Christine for sharing your story... Oh how heartbreaking to feel a DR had betrayed your trust! I hope you and your husband are on the right track to recovery now. I guess I was unneccesarily paniced. I copied and pasted to the CARETAKERS board as well and recieved other helpful responses. I also posted to that board the update on what the Dr. said when he returned my call. There is an incredible number of people here with HOPE, HELP & Heartwarming stories to tell. I will be reading them all in the weeks, months, even years to come. You can't have too much information, can you? Reading reports that I have to go to the "Dr. dictionary" to understand... But it better prepared me to ask the pointed questions the next day in the short time I had to ask them. I'm not the patient so I'm always afraid of taking up too much of the Dr's time for fear that if I REALLY needed to speak to him, he might delay the return call until HE had time. It's just a strategy I use. I know they are busy. I just received those reports in the mail and it was a bad night to get them, after hours and Don unable to make it home that night. It's great to have this board to vent. Our lives parallel with so many others here when no one else seems to understand. Keep the faith! There's ALWAYS hope! It's NEVER too late!
Karen (Jeepster)