ONCOLOGIST NOT TRUTHFUL

[Donna G]

My husband was diagnosed with SCLC in March 2003 and finished chemo July 18. In mid-April, the oncologist had told Steve after his 2nd round of chemo that he was in partial (75%) remission and after his 4th round, told him he was almost in full remission, and the only thing that kept him from saying 100% remission was one SLIGHTLY enlarged lymph node, but it was only less than 1/8" larger than normal. Steve asked him several times if he could see the Cat Scan film and the onc said that wasn't necessary because the films were clean - no evidence of cancer. We believed him until Steve saw the pulmonologist in May, for his worsening cough. He looked at the Cat Scan films and asked if Steve was undergoing chemo and Steve told him he was and the doctor said that there was still cancer present.. We were shocked... AND, we lost all faith in the oncologist. Also, Steve brought all this to the attention to the oncologist, who admitted that he hadn't even looked at the films!! He did, then, in front of us. The radiologist had even circled the cancer highlights.

Steve's recent PET SCAN results confirmed that there is a cancerous small mass still present in the right lung, as well as some lymph nodes. The 3cm mass is what the oncologist was saying is "probably" just dried up

blood vessels and dead cancer cells and he was just going to leave it at that assumption. I asked for a PET Scan and the first time he said he didn't think it was necessary, but after insistence, he agreed. Thank goodness because we now know there's still active cancer cells..... BUT there is no mention of restarting chemo.

Steve had an appointment Wednesday with his oncologist, after his

bloodwork. The purpose of this visit was for the onc to go over the

PET SCAN results. We had a copy of the results, but had never been

explained what they meant. The oncologist came into the room and

began drawing pix, etc. which wasn't really related to Steve. He was

stammering and talking in short phrases, sort of like he didn't know what

to say and not doing well at ad libbing.... We both asked a few questions and he tried to answer, but wasn't clear. When I asked him more specifics he told us this: HONESTLY, I HAVE TO SAY THAT I DON'T REMEMBER WHAT THE PET SCAN RESULTS WERE AND I'VE SEEN 3 DIFFERENT COPIES OF THE REPORT BUT I DON'T KNOW WHERE ANY OF THEM ARE... I'VE LOST THEM!!!! I don't know why he didn't just pull the report up on the computer and print it... I surely would NOT have come to the consultation without them, when that was the focus of the meeting.

Anyway - he told Steve that there was evidently live cancer and he was NOT going to continue chemo until the cancer starts GROWING! Steve's cough is terrible and getting worse all the time. The onc has "suggested" reasons for the cough - from asthma to post nasal drip...... When I asked again about the cough, he said, very nonchalantly, "well, there could be cancer in the air sacs" and went on to something else..... I asked if there was a way of knowing and he said NO. I asked if there could be another bronchoscopy procedure and he said NO and I asked why not and he said "Only if there's massive bleeding involved." I knew better, or at least thought differently.

SO, we left there with no answers and in total frustration.... The pulmonologist (that did the bronchoscopy and biopsy in March) has an office on the next block. I pulled in there, asked Steve to get an appointment. He got the appointment for the next morning (yesterday.) The pulmonologist IS doing another bronchoscopy and a new biopsy THIS Tuesday!! He showed us the PET SCAN films (I had gotten the films and took them with us, so there would be no chance of them being LOST.) He thought Steve should have continued on chemo since there was live cancer.

From all I've read, an X-Ray is the LEAST effective way to detecting lung cancer. Even when Steve was first diagnosed, he was thought to have pneumonia.. the cancer didn't show up on the X-ray. NOW, the oncologist said he would follow up with Steve monthly - and I asked if he would be having a CAT SCAN monthly and he said, "NO, JUST AN X-RAY!!" No way are we just settling for an X-Ray!

When we saw the oncologist Wednesday, I asked about a tumor marker included in the bloodwork. He had a Tumor Marker (CEA) in March and again in May, but not since. He looked through his folder Wednesday and said he ordered one for that day. I asked if the results would be in with the CBC that day and he said NO - in a day or 2. This afternoon I called the Cancer Center and there WAS NO CEA ORDERED! His nurse looked at Steve's chart and the order is down for NEXT week!!! I can't believe the uncaring and incompetence when people's lives are at stake.........

[Jenny G.]

Donna,

That is unbelievable! Please get away from that doctor and find someone else. It sounds like the pulmonologist knows what he's doing, maybe ask him for a referral. So sorry you're having to deal with this on top of everyting else.

Jenny

[bengel]

Hi Donna,

I would agree with Jenny. You need to find a new oncologist. Is there a major medical center near you where you could get other opinions?

My prayers are with you for wisdom and clear decision making in this matter.

Bud

[Jenny G.]

Donna,

You're post has been bothering me so I read it again and tried to see from the other perspective. How many chemo treatments has your husband already had? There may be a reason not to do more without a break? Do the oncologists routinely look at the actual scans themselves or do they rely on other professionals to give them the results? This is a quesition for everyone. I think a neurologist may have actually read my MRI results and faxed them to my doc. My doc also thought my cancer was gone after the 4th treatment and this was without scans. He told me after the fact. Just some thoughts, but it still doesn't explain why he hasn't been up-front with you and in any case I would still find another doctor that you feel you can trust. I think that's an important part of treatment.

Jenny

[JonathanS]

That oncologist is plainly and simply playing games to cover his own *ss!! Do not let him tell you that he did not look at the scans, because if he did not look at the scans himself, h had no business telling your husband he was cancer free!! he is also 100% wrong about chemo, he needs to be on something now!! he is the oncologist and he is the one that should have looked at those scans-- not a radiologist, not anyone else!!! He is liable for the lie he tod you! If I were you I would get out of there immediately and see someone else in a totally different hospital!

hoping,

Jonathan

[daggiesmom]

Dear Donna,

Your post has me fuming mad. How could anyone call themselves a dr. and behave the way that oncologist has. He doesn't read reports, he waits for cancer to grow, he is in my book totally incompetent and is playing with Steve's LIFE. Get away from that dr. as quickly as possible and find someone who cares. Also, it sort of sounded to me that maybe that dr. has a few problems of his own? hum? " I lost it" "I didn't read it" Please find someone else as soon as possible. With cancer, time is of the essence.

Joanie

[Karen]

I'm in agreement with the rest, if you can get to a new ONC you should. We dealt with an ONC with a somewhat shabby "bedside manner" and my mother-in-law so often felt like he couldn't tell her much. Luckily the folks at the radiology center were more clear and helped ease some of that frustration they were feeling. I encouraged her into switching him to a different ONC, however, everyone they asked said their ONC was the best in the area.

My father-in-law did amazingly well with his chemo. He had a cough situation too which seemed to be the start of this whole battle, come to think of it. The chemo and rad to the chest were successful and there are so many success stories on here.

I am almost nervous about posting supportive messages because of the way our journey ended. (We just had my FIL's memorial service this morning.) However, I believe that everyone must do what they can to help fight this beast that robbed my kids of their 56 yr. old grandfather, so I am here to say be aggressive in getting the best care for your husband. If you haven't checked out the site www.blochcancer.org you should. He is a serious longterm survivor and his online chapters from his book may give you a little extra boost in areas you are wondering what to do.

It seems they just never can give much of a pinpoint prognosis. My friend's 5 yr. old son had brain cancer and they thought he was going to die that night when they discovered it had returned after a 1 yr remission. He hung in there for almost 4 months. Then my FIL was told 3 mos. w/o radiation and he fought hard, doing the full head radiation, but lost the battle in less than 1 mo. Still there are so many stories on here about folks who have extremely lengthy successes.

Positive thinking is HUGE. So is time for laughter. They have literally done studies that shows it has a physiological effect. Rent some good comedies when you two need a moment to escape the battle. Think positive but remember to cherish every day. If there is one silver lining in the cloud of cancer is that it teaches you to take no moment or nobody for granted. Saying prayers for you and your hubby, Donna.

God bless~

Karen M.