Follow-up Checkups....

[Guest Ellen]

Hello Everyone...I was diagnosed on March 22, 2001 with lung cancer, and later staged at IB. How fortunate I was to have "it" discovered at an early stage ! I was treated with 3 rounds of chemo (Taxol/carbo) to reduce the size of my 5cm tumor. Then, on July 9, 2001, I underwent the removal of my left lung, ie a pnuemonectomy. Living life with one lung has its challenges, but I am still cancer free. My original oncologist has since left the staff of the cancer center at which I received treatment -Oregon Health Science University in Portland, Oregon. The place at which she is now practicing is not a participant in my HMO plan - Blue Cross. For follow up Dr. Ross prescribed a CT scan every 3 months for the first two years, then every 6 months for the next 2 years, then once a year at year 5 and every after. But, the oncologist I am seeing now at OHSU insists that Dr. Ross' followup schedule is not neccessary, and as a consequence he is only ordering chest xrays , once every 6 months for the next 2 years, and probably no check ups afer year 5. I know there is a high rate of reoccurance with lung cancer; I also know early detection is a key component in curing lung cancer. I can't change oncologists at the clinic because this man IS the boss. So...my question to all of you is, What do your followup check-ups consists of? Am I unreasonable in feeling that a CT scan would make more sense in early detection of a reoccurance? Thank you for your answers....Ellen Lilja, Albany, Oregon[/b]

[Connie B]

Dear Ellen,

Well, your words are music to MY ears, but some doc's don't feel the same way as you and I do. However, I to had my left lung removed 7+ years ago, then I underwent my chemo and radiation treatments. I seen my Onc Doc every three months for the first (three years) and in that time we did CT scan, then chest X-rays then CT scan and Chest X-ray every THREE MONTHS. So out of all honesty I had CT scans done twice a year and X-rays twice a year and we did that like I said for the first three months. Then when I went to every 6 months we stayed with the CT Scans. I did every 6 months for another 3 years. Then I was advanced to Once a year and NOW I get Chest X-Rays, Once a Year. However, I also still see my Pulmonologist once a year as well, and he toooooo does a Chest X-ray if I want one, and he never says NO! So in all honesty I still see my doc's every 6 months, I just stager them now so I see my Onc Dr. then 6 months later I see my Pulm Doc. It works well for me, and it gives me peace of mind. Now I also was a stage IIIA-B at time of my diagnosis. So....... But, like you, I would want to be right ON TOP OF IT! So, it sounds like an insurance issue more then a Doc one!! And most Doctor's do try and stay within the guidelines, and in Most cases I do understand that. It's a tough call to make. But, keep in mind, your Onc Doc has a BOSS too!!!

Good luck and continued GOOD HEALTH!!

Warm and Gentle Hugs.

[Marie]

Hi Ellen, I was dx: July 16, 01, staged 1a, lost left upper lobe. I go every three months for ct scan but no xrays. Follow up is with my lung surgeon. I see Onc every 4 or 5 months but he doesn't agree with scans every 3 months. He thinks it isn't necessary that often. I have more faith in the surgeon and since my LC was missed three years earlier, I definitely want it checked every three months. If I luck out with it not escaping after floating around all that time, I don't think I should give it another chance to be doing it's thing undiscovered. I'll take my chances with the extra radiation to have the little bit of piece of mind that it gives me. My next scan is coming up early February and already it's on my mind daily. I had half my Thyroid removed Wednesday for a possible cancer, (I'll know Thursday) and this stirs up the LC fears even more then usual. If I'm told the LC has returned, I will probably change Oncologist. I feel like I have a better chance with an overly cautious Doc. Insist on what you think is right for you. Doctors aren't always right. Take care.

[Guest tcandy214]

hi i have the same problem had nsclc IIa and i learned from american cancer society the high reoccurance rate in the first 2 years my suregeon seen me 6 weeks after suegery chest xray then 3 months later ct now he said once every 6 months called the surgeon he said 6 months this is not a candy store

[bobmc]

Hello Ellen; my very best to you;

I was dx. NSCLC stage IIB, Squamous type, on 4/15/01 and had a left pneumonectomy on 5/2/01. I am also like you very, very grateful that the disease was caught early. I presently see my onc. every 3 months, I have ct scans of the head, chest and abdomen every 6 months, along with a chest x-ray and bloodwork. At the other 3 month interval, I have only a chest x-ray and bloodwork done. I am comfortable with this and feel if anything is developing it should be caught early. I originally began seeing my GP for the tests and follow up care ( my decision ) and he tried to reduce the number of tests as he was concerned about unnecessary exposure to radiation. I believed him but let him know that I was unhappy about the test schedule. We both consulted with my onc. and as I stated I now see him for follow-up care. I would advise you to also let your doc. know you are unhappy, and would like a second opinion. I would also speak to my insurance carrier about it. You need to and should feel comfortable about your follow up care.

God Bless and be Well

Bobmc

[Tiny]

Hi Ellen,

How unfortunate that your first oncologist moved. I live in Yakima, Washington, and get treatment at the North Star Cancer Center. My follow-up for my cancer is with my oncologist, a woman, who is scheduling CT or PET scans and bloodwork every 3 months for the first 2 years, then tapering to every 6 months for the next 3 years, then yearly checkups are planned after the grand 5-year benchmark, assuming I am continuing to wake up each day by then, as our friend Cel remarks. I've heard pros and cons regarding receiving that degree of radiation, so who knows? I wish you all the best.

[ginnyd]

Husband was dx 9/02 with Stage IV with mets to brain. Had craniotomy 10/4, then 14 whole brain rads, then lobectomy (with 3 lymph nodes) on 12/3. Recovery has been long and hard.

We are totally confused at the moment. Docs at Univ of Penn (where he had brain surgery) said have WBR and then lung surgery and then do nothing but watch (no chemo, no more radiation)

Doctors at Fox Chase Cancer Center say chemo and rad with my husbands type on cancer are very controversial and show that this treatment does not prolong life. Said that radiation to the chest could stop it from recurring there, but that the side effects can be gruesome and that it wouldn't stop it from recurring other places.

Chemo may, just may, offer a very small benefit. Also, they would not do any further treatment until we get an MRI to make sure the brain mets are gone or where they are. Having MRI thurs. Scared to death.

Any opinions on the chemo and radiation?

This site keeps me sane.

Ginny

[Cindy RN]

ginnyd-I do not have the same type of ca your hubby has BUT I understand what the DR is saying about not treating with the radiation. That might prevent it spreading more at that sight but once ca has spread to more than one major organ it can go just about anywhere. YUK! I know that is not something we want to hear but sometimes tx is worse than the ca. I know of people who have had radiation to mediastinal area-between the lungs and it just burned up their throats. She was unable to hardly swallow for 2 months. Had to have feeding tube in during that time and the ca still spread more in the brain. I WOULD go with the chemo tho. If he is fairly healthy and your DR is good about anti-nausea meds then go for it!! I will keep on trying whatever it takes up to the end, never give up hope. I have seen miracles before-WITH brain tumors-so keep us posted and I will be waiting to hear after Thurs tests

[Guest eileenm]

Hi I had right upper lobe removed june of 2000----because I also have sarcoidosis, I am still going every 3 months for cat and sometimes pet scans---the problem is that the machine lights up for sarcoidosis (inflammatory lung tissue)---so in November-- because my nodes were enlarged by my operation, he did a bronchiscope and a mediatinoscopy

all negative for cancer---

if all were ok, he was originally going to have me scanned every three months the first yr then every 6 months the 2nd and 3rd yr---but it has not worked out that way because of the funny scans---

i know sometimes I show nodules then he waits for 3 months to see if they grow then they have disappeared---so scans can sometimes be deciving for false positives

regards

eileen ---stage 1A

[Guest Runway13]

Hi Ellen.

I had surgery for Stage 1 NSCLC. Doc said no chemo and no radiation. I guess he considered me cured. I have taken it upon myself to have a CT scan done every 6 months. Don't forget you hire your doctors, They don't hire you.

I have never seen an oncologist yet.

[gail]

Who is following your case? My oncologist and I are best friends now. Every 3-4 months, also stage 1. I only see my surgeon twice a year.

You can call and take your scans and go. I'd much rather see my onc then my surgeon.

[Guest Fay A.]

I was dxd as Stage I in June of 99, had surgery and was told follow up should be a chest xray once per year. I didn't buy into that, fought it tooth and nail, had CTs done at 3 months, at 5 months, and at 9 months. At 10 months post surgery had second thoracotomy to remove a malignant tumor left behind in the first operation. (turns out it was there all along) I was erroneously dxd as Stage I when I was actually Stage IV. My point in writing this is not to alarm you, but rather to make you aware that even at top notch medical centers with top notch physicians errors do occur, and they won't necessarily tell you when it happens.

[Guest DaveG]

Throughout this whole process I have always kep my family doctor involved in everything that goes on. He has been my doctor for over 23 years, and probably knows more about me than I do . When he was on vacation, last August, when I was losing weight very rapidly, I ended up seeing one of his associatiates, one that was familar with my case. Because of my history, this doctor felt that a CT Chest Scan was in order. That is when they discovered, what appeared to be, another tumor in the lower lobe my right lung, the same area as the first tumor. When the results of the scan came back, this doctor went to the radiologist and the two of them reviewed the scan together. They were both convinced that I had another malignant tumor. When I went to see my thoracic surgeon, at the request of my family doc's associate, my thoracc surgeon also agreed that the tumor looked malignant, from the scan. When the surgery, which, by the way, was my decision (I opted to by-pass the biopsy, as I believe surgery is more conclusive tha a biopsy), was done and over, and the tumor was found to be benign, everyone breathed a big breath of relief.

The point is, I was in charge. I was one who made the final decision on the surgery. One other comment I have. I went out of network for my surgery. I consulted with my primary insurance company (I am also on Tricare, the medical coverage for retired military) and they agreed to cover 60%, Tricare picked up the rest.

Do not be afraid to call your insurance carrier and discuss the reason why you want to go out of network. Emphasize that this could be of benefit to all conerned, especially you and the insurance carrier. Most insurance carriers want to make sure you are getting the best coverage. The University of Wisconsin Cancer Center is also out of network for my carrier, but they agreed to cover me.