Post treatment follow up norms

[mary colleen]

My husband has successfully recovered from October bilobectomy, and has completed most of his planned chemo treatments. He should finish the entire course of chemo in about 1 month. In other words, all treatment will stop soon. I'm thrilled about this, and am operating under the hopeful assumption that this will be the end of LC in our life.

However, I assume also there will be some form of medical follow up over the first year or so. No one at the cancer center has yet discussed with us what comes next (after chemo ends.)

What is standard follow up after surgery and chemo? Will there be CAT/PET/MRI testing on some sort of schedule? Will there be new scans immediately after chemo ends next month? ( I really hope so.)

I know that many of you have experienced the post-treatment follow up protocols, and thought you may be able to give me some insight regarding what to expect. I can best help my husband if I know what the next steps are, and can discuss them with him in advance.

Thanks very much!

[recce101]

Mary Colleen:

I don't have any personal experience with post-treatment follow-up (yet) but ran across a set of evaluation, treatment, and follow-up ("surveillance") guidelines for NSCLC on the M.D. Anderson website:

http://utm-ext01a.mdacc.tmc.edu/mda/cm/ ... L/SideBar1

(choose Thoracic, then Non-Small Cell Lung Cancer, then NSCLC...pdf)

For post-treatment surveillance of a Stage II patient, page 6 of the M.D. Anderson guidelines recommends: (1) Physical exam and chest X-ray every 6 months for 5 years, and (2) CT chest every year.

I don't know how well this tracks with typical practice across the country or with Medicare payment criteria, but at least it gives you the opinion of one major cancer center.

Aloha,

Ned

[chloesmom]

In my case, I had follow-up visits with my surgeon every three months for the first two years, and then annually ever since.

At these appointments, I always had a chest xray first, which he viewed before seeing me, so I got my results right away.

The x-rays have now changed to CT scans, which is just a result in change of protocol for the facility.

Oncology wanted to see me every 6 months, and now, they want to see me once a year. I got bloodwork done there every visit, which consisted of CBC, blood chemistry, and CEA.

I never did have a pulmonologist.

Cindy

[ernrol]

Mary,

My after treatment was scans every 3 months then changing to 6 months. I think this will depend on the doctor and the type of cancer. My personnel treatment never stops. My diet and supplements continue. I add new things when I hear of them and they have some evidence of fighting cancer.

I believe that my cancer was partially caused by my life style and diet. These things have an effect on my immune system. If I go back to the same life style as before including the stress, then I put myself in a more vulnerable position to have the cancer return. I look at it as a continue fight, but this is true for every one when it comes to being healthy Regardless of what any doctor says, I believe that diet, stress and surroundings can make a difference.

Keep us posted,

Stay positive,

Ernie

[Judy-OK]

Mary ... I currently go in to get my port flushed and bloodwork every 6 to 8 weeks. I completed chemo in early August, had a PET scan the end of September and another one just a week or so ago. So the PET scans are on a 3 month schedule thus far. Oncologist said it was "stable" and we will scan again mid March.

[blaze100]

Hi Mary, I seem to recall it was CT every three months with lung doc followup, blood work at onc every three months, and PET every 6 months for the first few years. I went to see surgeon if scan reports were bad (so much scarring too) and lung doc needed a second opinion on films.

I tried to space the doc visits out so I had contact with someone at least every 8 weeks.

I'm 6 years out now and it is PET/CT every January and regular CT every August or so. I see lung doc every year. I still visit onc and do blood work every 6 months.

I'm sure much of this is overkill, but it makes me feel better to keep in touch with my doctors. If your hubby feels they same way, let his docs know and they will schedule more frequent meetings.

Barb

[mary colleen]

Thanks, all. It helps to know approximately what to expect. Second question - will his port probably be taken out at the end of his current chemo regimen?

Thanks

[Judy-OK]

Good morning Mary. The removal of his port will most likely depend on the wishes of his oncologist. I actually asked the surgeon that inserted my port if I could just keep it indefinitely because my lung collapsed during the insertion. I would rather deal with getting it flushed and keep it in case I need it again rather than endure another chance at a collapsed lung. My oncologist's PA said she usually likes to leave them in for a year or so. I guess when the year comes around she and I will have a discussion and a decision for me to make. Is the port bothering him exessively? Mine did bug me for a while but I guess I have just gotten used to it now.

[mary colleen]

Thanks Judy; yes, it seems to bother him, mainly psychologically. He has to really try to ignore its presence. I'm sure that, if given the option, he will choose to have it out as quickly as possible.