Follow up after initial treatments

Justakid · November 3, 2004

My Onco told me Monday that she would only be doing xrays like once a year.

I'm confused, doesn't it make more sense to catch a possible tumor when it's smaller then bigger? Because of the reoccurance rate shouldn;t we be checked every 3 months? That doesn't feel like monitoring me closely! SHe listened to my chest and sent me away for 3 months.

Needless to say I am very uncomfortable with this! I see my GP in a few weeks (he is nursing me back to health and is the one who initially caught the tumor), I'm discussing this with him. This seems unacceptable to me when there is only a 30% chance that this will not occur. I'd rather have a chest xray every month for the next 4 years till I can be declared cured!

Of course I'm over reacting, but what has happened with you guys?

kdaru · November 3, 2004

I'm a noob, but that sounds ridiculous to me. I'd be insisting on a CT/PET every three months, or at least a CT if you're not fond of radioactive isotopes. Maybe time for a new onc?

Katie

cindi o'h · November 4, 2004

I get a CT Chest Ab Pelvis every 3 months.

Cindi o'houlighan

Justakid · November 4, 2004

I'm getting upset now! Not only did everything go wrong with treatment but now my follow up doesn't seem to be being handled well!

MurielK · November 4, 2004

I'm some miles up I 95 from you (Fairfax) and am stage 1B. Had surgery in June '03 and chemo mid Sept - mid Nov. Since then I have had a CT every 3 mo - chest or chest/abdomen/pelvis alternating times. Also, my Onc. reviews the film each time. Do you have any other options for an Onc?

Muriel K

Nancy B · November 4, 2004

Hi Beth,

My first time around (4 years ago), I had a chest x-ray every three months the first year and a CT scan once a year. Then I moved to chest x-ray every 6 months, still CT once a year. That is how they found my second cancer, on a routine chest x-ray (1 CM) The first time was nsclc and this one was sclc, so don't know if that makes a difference. They are telling me now, scans every 3 months for a while, don't know how long.

I have been known to insist on a CT scan if I "feel" something isn't right and the doctors have listened. My oncologist told me last week that my diligence has gotten me this far, I took that as a compliment. Try to get what you feel is right for you. We have to listen to our bodies.

Love and hugs,

Nancy B

gail p-m · November 4, 2004

My Dad who is a stage III gets a CT scan every 3 months and I'm glad he does. If it recurs, better get it sooner than later. ((He had an oncologist we were not at all happy with; had to stick with him through his rounds of chemo but once they finished, we found a new oncologist; no regrets).

Ask for and get what seems reasonable. Do not hesitate to change doctors if you're not happy.

Good luck

Gail P-M

Hebbie · November 4, 2004

Beth,

I too have gotten a CT Scan once every 3 months since treatment ended. About 2 months after treatment ended, I had a PET Scan and a brain MRI to use as a "baseline" going forward in case I should ever have cause to need follow ups.

Now, as I approach my two year anniversary, they have moved the CT Scans back to every 4 months, and have mentioned going to every 6 months (which scares me -- I like being closely monitored).

With Stage IIIA -- I would really suggest having scans more frequently than once a year.....just one person's opinion! :roll:

Andrea · November 4, 2004

Beth--my mom, IIIA, gets scans now every 4 months

kimmek · November 4, 2004

Hey Beth

I would most definatly get a scan every 3 months. Plus xrays are KNOWN not to pick up alot of lung cancer tumors, Mom's never showed on an xray, only when they did a ct scan.

Mom's onc told her just yesterday when she released her from hospital, that "'''''''thats all, ill see you in 3 months for a follow up scan""""". Please follow thru with this, if your doc insists, then move on to another. This is your life and you should feel comfortable with all aspects of treatment. This does not make me feel comfy at all.

Keep us posted and call that doctor this morning when they open up!!

Kim

berisa · November 4, 2004

Beth, it is unacceptable. 1 year is too long. Look for another oncologist.

Justakid · November 4, 2004

The more I read these responses the more upset and mad I get! Why did I just go through all this treatment to not me monitored carefully? I'm requesting copies of all my medical records from everyone involved since April of this year and finding another Doc. I am gonna speak to my GP first (the one who found it), he is trying to make me healthy again and may just do the scans himself (he has the equipment at his office, even the Onco doesn't have that!), which is fine with me, I trust him more then any of the others (except my surgeon) and if something happens he can refer me to another Oncologist. I'm speechless about this!

Ginny · November 4, 2004

Beth,

Please do that. Earl had scans every 3 months, chest and abdomen. You have to be your own advocate, this is your health. Remember, the squeaky wheel gets the oil.

elnodel · November 4, 2004

Len's oncologist says that he will get xrays or CT scans every three months with the CT scan on alternative times (so basically CT scans every six months). He felt that the xray would pick up what he wanted to see but that if we really wanted the CT scan he would be ok with that too.

Since we're finishing radiation right now, we haven't started this yet -- he's been inundated with CT scans and xrays during this process. But we'll go with the xray in January, then a CT scan in April for now.

Ellen

SDianneB · November 4, 2004

Beth, I'm rather cynical about all this to begin with I guess, so what I say should be taken with a grain of salt -- and the realization that it's just from my own personal experience. No more, no less.

In January, I will begin more or less a routine check-up and follow-up schedule with the Pulmonologist I started out with. He is the one who literally pulled me back from the brink in early June when I was first diagnosed, and has intervened for me time and time again when I was confused or needed to get the Oncologists/Radiation folks "unstuck." He's smart, cuts through the crapola and confusion, and if he doesn't know, he will say he doesn't know. What a concept! :roll:

What I'm thinking about doing is that in January when I go back to him to begin a regular schedule of checkups, he will be the one I follow with and not the oncologists. I see them now as the specialists who treat the cancer, and if the cancer goes away and I'm left with scarring and checkups, then I don't need them. If the cancer comes back, then I'll need their services again. I see this more or less like going to a surgeon, having surgery, following up a few times to make sure the site has healed, etc., and then going back to the regular doc.

The Oncologoists where I've gone seem to want to do everything -- one even giving me Rx for yeast infections and telling me there was "no reason" to see my GYN doc. Yeahright.

Maybe I'm fortunate in that I got connected with a really great Pulmonologist when this all started, so I have him and my Primary Care physician to keep an eye on me to make sure things are going well. With all the trouble I've had with Oncologists through this mess, I'm not inclined to stay with them any longer than I have to.

Having said all that, also realize that I know people and there are people posting here who have just the the opposite experience -- they have really great Oncologists and rely on them just as I do the Pulmonologist.

I think what it all comes down to is that if you aren't comfortable with it, then find something you are comfortable with. That's what I'm learning to do more and more often, and I believe it has to have a positive influence on my well being.

My best to you. I know these situations are difficult, and it isn't always easy to buck the trend or the direction that other people tend to want to steer you in. Take care of yourself.

Di

mhutch1366 · November 4, 2004

Beth=--

Don't get upset, just get moving....

You should be scanned every 3-4 months for the first 2 years, 4-6 months for the 3rd and fourth and twice a year for the fifth.

You know what you need to do, and that's good.

Prayers always,

XOXOXOXXO

MaryAnn

TAnn · November 4, 2004

Beth,

Pick up that phone!!!!! A chest x-ray once a year is ridiculous. A CT scan every 3 months is what you should insist on. My tumor NEVER showed up on the X-ray, not because it was too small, because of where it was. Be your own advocate and insist on the follow-up scans and check-ups that you are comfortable with. You might be surprised that they will actually listen!

Good luck and keep us posted. I wish you could come to Houston for your follow ups. MD Anderson is great and when I read stories like yours and SDianneB's it makes me realize how lucky I am. My oncologist is a Thoracic Oncologist, (lung cancer specialist) and I also have a Gynocology(sp?) Oncologist there, and a Radiation Oncologist, but my Thoracic Oncologist is my main doctor, I don't even have a GP, he's that too. He listens to everything I have to say and always considers my opinion when selecting any type of treatment, I like him alot! I can't say enough good things about my treatment there.

TAnn

chloesmom · November 4, 2004

Just my 2 cents and my schedule for you to make whatever comparisons you need.

I see my chest surgeon every three months for the first two years out from surgery and then once a year forever from then on. He does a chest x-ray every time I see him and reads it before he comes to see me. I do not get CT scans--I believe he can see something even if it's really small if he has a history of chest x-rays to compare, which he does.

I have also recently read that too many ct scans or other radiation exposure tests can actually cause what we are trying to prevent, and that a ct has a lot more radiation exposure than a chest x-ray. Just food for thought, but that's why I think I get the x-rays rather than the constant scans.

I see my breast surgeon every 6 months and I'm 3.5 years out from surgery for that--YEAH! I don't know what the schedule will be when it changes, but I suspect that at the 5 year mark, it will go to once a year. I do only have a mammogram once a year--

Radiation oncology has moved to a once a year schedule now as well, as long as I'm seeing all the other docs regularly.

Oncology--I see her both for the lung and the breast cancers. She said she really only needed to see me annually as long as I was being seen by all the others too, but I told her I would be more comfortable with twice a year for now, so that's what we do. She did bloodwork last time (May) and I see her next week, so I'll see what she's got in mind then, but I think it will just be a checkup and no blood. I will be getting a bone density test as a baseline because I've recently switched from tamoxifen to arimidex to try to prevent a breast cancer recurrence.

Around here, it seems that the surgeon is the head of the treatment coordination and planning if you've had surgery. That is the case with both my breast and chest surgeon. I don't have a pulmonologist--no one ever said I needed one.

Like I said, this is just information for you--I am totally comfortable with my treatment plan at this time and am looking forward to the once a year visits with the chest surgeon, rather than this anxiety and stress every three months.

Hope this helps.

Cindy

chloesmom · November 4, 2004