Idenity crisis

[jaminkw]

I thought of the subject after doing a post to Dr West at the new site there. For those who remember, I was told my cancer was in remission on April 1. To be more precise, my doctor said, let's stay on the Avastin "for awhile" and keep this cancer in remission. So am I a survivor? If not, how long does it take to become one in the face of no evidence of the disease? How is "maintenance" different from follow-up in my case? I don't want to appear ungrateful but I really, really want the doctors' (three of them!) blessings in seeing how my body will handle this now without chemo.

My original CT/PET said it appeared to be low level malignancy, inflammation or infection. My follow-up after six infusions of Carboplatin/Taxol/Avastin and two Avastin maintenance infusions about five months later showed the malignant pleural thickening was gone and there was no evidence of cancer cells in the chest wall or anywhere else.

No one wants to give any credibility to what I and my family (including my daughter who is an oncology nurse) believe were a combination of freaky events that led to the effusion that we suspect revealed an early stage cancer. At the same time, none of the experts can explain how a pleural effusion that defines advanced lung cancer appeared so suddenly after a complete physical three months earlier and disappeared so quickly after first line treatment. What am I missing?

Judy in Key West

P.S. Looks like maybe Comcast in Key West has resolved it's issues just in time for me to leave for Orlando again!

[CaroleHammett]

Hi, Judy.

1. Every one of us who has lung cancer and is alive--regardless of our condition or status--is a survivor.

2. To be in remission means that there is no evidence of active cancer cells in one's body.

3. Avastin is generally considered a "maintenance" drug (its purpose not to cure, but to either stop or slow down growth of active cancer cells).

I have no idea whether Avastin is given to patients who are in remission since I'm not eligible for Avastin myself (because I have squamous cell type cancer rather than adenocarcinoma, etc.).

Sorry I can't be of more help.

Carole

[Patti B]

Hi Judy-

I am not quite sure how to answer this post but here goes:

As far as I am concerned - the morning after you are diagnosed with cancer and you wake up - you ARE a survivor!!!

I know you are having trouble with the chemo and have had a lot of side effects but my personal opinion is that I would go with whatever it took to keep me cancer-free. Whether the original staging was right or wrong, or for whatever reason you were blessed with now being NED, don't let that slip away unless the docs tell you to. I have just had my 25th chemo and if I need 100 more, thats what I will do.

You asked the question "what am I missing?". Nothing - like all of us, you are longing for the day when you no longer need to put up with this crap of going so far to get your chemo and being tied to that hospital and the scans, and everything that goes with it. And I hope and pray that for you someday that will come. But maybe you just need to make sure that you stay NED by doing a bit more maintenance chemo. After that, I hope SO much that you can see what your body does on its own - stay cancer-free FOREVER!!!

Hugs - Patti B

[jaminkw]

Carole, your supportive response is very helpful. You and Patti B represent two valid perspectives on my situation. That's what makes it so hard. I have a niece who is my hero. She has breast cancer with mets to the bone and liver. After about a year of weekly chemos, she said enough. She changed her diet, started exercise and went on an approved hormone treatment for her cancer. Everyone says she looks great and she said she's never felt better. Of course, she is on another treatment regime and I'm considering none, but not for prolonged periods of time. And I am basing it on the logic Carole so clearly laid out. If my doctor is o.k. with a break, I expect frequent follow-up scans. But Patti, I hear you too. Bottom line, staying alive wins and I can't see me going against my doctor's strong recommendation. We'll have "the talk" in three weeks. She knew I was skeptical about the Avastin before the CT/PET and I went with her wishes. Post CT/PET, I need to hear her plan now to see if it will accommodate mine or if we can find a compromise.

Judy in Key West

Judy in Key West

[Patti B]

Judy-

I think talking with the doc is a great idea. Maybe she can better explain to you how long she wants you to stay on the maintenance and the reasons for it. And hopefully between the two of you, you can come up with a plan that is comfortable to both of you.

Good luck, keep us posted.

Hugs - Patti B.

[JocelynM]

What they said - you're alive; you're a survivor.

My mother-in-law has/had? non-hodgkins lymphoma. They new it for 2 yrs while it remained quiescent. Then it flared up and she underwent chemo. After 6 months they gave her "maintenance" chemo- much lower dose - and she tells us she is all finished with her treatment. So. I agree, the term is confusing.

But I kinda know what your going through. My last ct scan showed no cancer outside my lung. (I was dx 3b) They said' "If it acts like a horse, we treat it like a horse."Chemo,rad...) But NOW they're acting like it mighta been a zebra!

It's such an inexact science (and soooo underfunded)even they probably don't know for sure. I've been told that cancer treat is as much art as it is science. One thing is for sure - they know more than me and they want the best for me and we all just do the best we can! And, of course, I always think of a dozen questions/clarifications after I've left the dr.s office.

Bottom line: do you trust your doctors? If you don't; get a 2nd opinion (3rd, 4th...)

Jackie

[jaminkw]

Jackie: Thanks for responding. Sounds like you've had a tough time too. Although I was finally diagnosed via cytology slides because I had not discernable tumor, we do have in common that we both appear to have intuited something was wrong before the doctors picked up on it or before any symptoms appeared. I was also told I should respond well to treatment because I was so healthy. Glad you finally got the doctors that did the job.! I sure did.

I trust my doctor implicitly--I'm at MD Anderson and if you don't trust them you won't trust any doctors. I also post Dr West at onctalk.com now cancergrace.org between doctor visits. He always presents a view that mirrors my oncologist at MDACC. But the doctors are all so enamoured with Avastin. But I've been borthered on occasion when my intuition (not always to be trusted!) conflicts with the doctors big picture. In my case, I'm going to opt for asking for a break. I need it, my body needs it and, in the meantime, scans can tell if anything is happening. If the break is brief, I don't think I'll get anywhere dire before it's caught. That's my hope anyway--of course, all only if my doctor agrees.

Good luck with your surgery. I'll be waiting for an update.

Judy in Key West

[JocelynM]

I really didn't mean to make it sound like I've had a tough time. I've bad it easier than most here.

I wish I knew my body as well as you know yours. When I was in chemo I felt that I didn't know it at all! But you're right - there's nothing like intuition.

I've been getting a rest and feeling stronger every day. So, to me, that sounds like a great idea. Get a running start.

The most important thing in our encounter with cancer is ourselves.

Jackie