Will treatment ever get started?

[gail p-m]

I have been waiting to post here for about 2 months with specific information about exactly where my 79 year old Dad is with his lung cancer journey. But I feel as if we'll never find out. Here's his story/frustration! His lung cancer was found "accidentally" in August 2000. When they operated, they said it was Stage 1 lung cancer, he needed no further treatment after his lobectomy... He has been followed with CT scans every 6 months.

After his CT scan in very early April, he was told that something showed up but they weren't sure what it was. So he had a bronscopy which was inconclusive. Then he had a PET scan. (It may have been the other way around with the bronscopy after - I can't remember! It has been such a long 2 plus months) Then he was scheduled for surgery to get a look at things. The new surgeon (his former one retired) went on about how big an incision the former surgeon had made, how the other surgeon did not take out many lymph nodes... - this really made us feel great and start to question things- by the way, the former surgeon was the head of the dept. so he wasn't exactly a fellow off the street). Anyhow, it turned out that the incision was almost as big (the surgeon blamed it on the job the former surgeon had done) and yes, it was cancer again. This time it wasn't just a spot but was "whitewashed" over the chest wall. So next they wanted to do some scans. So next was a CT body scan. On the scan, a very small spot on the femur showed up. Again, they said they are not sure it is cancer or not. So now Dad is scheduled for a PET scan (a full body one, this time). However, the scan is not for another week. If the scan "lights up, it is definitely a bone metasticis. If it doesn't light up, it still may be cancer, according to the oncologist, since the spot is so small. So if the scan doesn't light up, then he has to go for a biopsy of the femur. Needless to say, they won't tenatively schedule this because they are not sure it is needed since the PET scan may light up. In all, once Dad has the PET scan, it will be a full 2 1/2 months since the CT scan that showed "something."

My Dad and family are feeling totally discouraged. My Dad wants to start treatment to feel like he's doing something to fight this. But it's wait after wait. In the meantime, of course, we are all privately thinking -- it's spreading more and more. I can't believe that since my Dad should be "urgent" they are making him wait for these tests for so long... I don't know if these waits are standard and/or if I should be "yelling." The oncologist, on the phone to my Dad or sister, said something about if it's confined to the lung, it's treatable to extend his life but if it's in the bone, it's very bad. (I am quite a distance geographically from my Dad so I get this information second hand by phone every day. However, when the "treatments" start, I will be there. My bags are basically packed and I keep waiting and waiting).

Thanks for listening. I have been coming to this board every day for 2 months now. Just reading everyone's stories and seeing the support and positive way that people approach this has been a "sanity saver" to me.

Any thoughts or comments about what has been happening with my Dad would be appreciated.

My thoughts and prayers are with each one of you.

Gail

[Guest DaveG]

Gail: I can emphathize with you. I had a psoitive Ct Scan on April 2nd, when I went for my 6 month surgery followup appointment. Called my oncologist, had an appointment one week later. I didn't get all the scans, as I misunderstood her directions, but she went ahead and scheduled a PET Scan for the following week, April 16. Had the PET Scan, and got the results the same day, which showed multiple spots throughout my entire lymphatic system. A biopsy was done the afternoon of 2 of the nodes in my neck, and I was scheduled to return Friday for the biopsy results.

Friday, April 18, I was told I systemic lung cancer mets to my lymphatic system, and was being restaged to Stage IV from Stage I. Then I got the Chemo talk and was asked if I would like to participate in a clinical trial.

For pre-chemo baseline purposes, on April 21st I had a Chest, Head, and Abdominal CT Scan, blood work, and physical. On April 25th I had a Bone Scan, and April 28th, a final consultation with the oncologist adn preview of the clinical trial. Finally on May 5th, I started Chemo.

Usually there are many "hoops" to jump through before things get started and they always seem to take "forever". Since having LC, I have learned that it is ok to have a * next to an event on a calendar, because one phone call can change the plans for the day. I got that phone call yesterday, informing me that my blood counts were way into the below normal range and that I needed 2 units of whole blood to be transfused and that this needed to be done immediately. There went my plans for the afternoon and evening.

Hang in there, be patient (which is not easy), and let time run it's course. Soon things will be happening a much quicker pace. I will say, that, although it seemed as if I was going through one thing after the other, during April, the month did go by rather quickly.

Keep us posted.

[norme]

Hi Gail,

Sounds like you are right on track..... My husband was found to have nsclc on 7/31/02 and was not operated on until 9/11/02, and that was only because I changed surgeons. The first surgeon that was recommended was going on vacation, which he has a right, but then his books showed he couldn't operate until the last week of Sept. I asked his scheduling nurse if it couldn't be sooner and she said "what do you want us to do, take your husband ahead of other people who have been waiting" and I said, yes, if theirs is not an emergency surgery and only minor.....needless to say, she really gave me a look. I decided to contact and dr friend of mine and he recommended a different surgeon and that surgeon did it in 4 days of seeing my husband. He said it needed to be done earlier than that. But it is all a wait and see game. Evidently, there are not enough drs to cover all the patients is how I was told by one dr. He said if my husband were in canada, it would be 6 mo before surgery.... Sit back, take a breath and hope it all works out. one of the hardest things is not being nearby....

God Bless

Norme

______________

husband

nsclc dx'd 7/31/02

nsclc surgery left lung removed along with 5 to 7 lymph nodes 9/11/02

Radiation and Chemo 10/02 thru 11/02

Radiation 12/02 - 2/03

2/03 meds to brain - 10 whole head radiation treatments

4/03 meds to bone - 10 radiation treatments

[ginnyd]

My daughter has a bunch of friends that are doctors. When her Dad first got sick she called every one of them. While none are oncologists, they ALL said - Let no grass grow under your Father's feet. Get all treatments ASAP. Cancer waits for no vacation.

If the wait is longer than it takes to get test results - try to move on to another dr. or place.

I have told more than one doctor that this is medicine and science and a way to make money for them - for me it is only love.

[Jenny G.]

Hi,

Welcome to the group. I know how frustrated you must be, especially when you are far away. I certainly can't second guess your doctors, but I would feel better too if something were being done. What are they saying about chemo. Is there a reason they can't start that now? Your father has already been through so much with 2 surgeries, he must be very strong. Keep pushing for answeres and keep us posted.

Jenny

[Don Wood]

Hi, Gail. I agree that one should try to expedite tests so the proper treatment can be started soon. Personally, it irks me when one doctor bad mouths the work of another, and particularly when that was two years ago. Procedures improve with time. My daughter had the full incision for her gall bladder removal and a few years later, I just had 4 poked holes to remove mine. Also, when I went to the seed oncologist for my second bout with prostate cancer, he said that they got a lot of repeats where the external beam radiation had failed. I said, "I don't consider it a failure because it gave me 6 years while you guys perfected the seeding". There is no point in

downing another in this case. Your dad got two years before the return. Well, I'm off my soapbox now. Gail, best to you and your dad. Don

[LindaMRG]

Oh boy, do I know what you mean!!! My father was told at his 3/26 visit that we had to do something about the nodule that was there. So it began, PET, surgeon visit, needle biopsy, surgeon visit for results, biopsy of nodes, surgeon visit for results, finally onc visit, wasnt treated till 5/30. Theres got to be a better way. Hopefully prayers held the cancer at bay all that time. Keep us posted on the progress.

[rayroy]

You have to be patient to a certain extent. However, if you really feel things are not being done correctly you should always look for other alternatives. If anything look at nutritional supplements that may help your loved one. I wish you the best of luck and remember that this battle can be won. Good luck partner!

[john]

Ask the Drs about zometa or another biphosphonate. It is usually given for bone mets. It is sometimes given as a preventive measure, I think.

You could ask about the grade (aggressiveness) of the cancer. If it is a high grade tumor (aggressive). then I personally would push even harder for getting treatment. Even if it isnt I would try to get things going

Take care