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Guest dsrtrat011

Question form one who was recently diagnosed

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Guest dsrtrat011

Hi all,

I am very concerned about what I feel is an apparent lack of urgency by the doctors in this somewhat rural area. Here is the cronology so far:

Dec 13 - XRay because of chronic cough indicated spot on right lung. Estimated to be 1.5 - 2.5 cm

Dec 20 - CAT Scan affirms lesion and estimates size to be 3.0cm

Jan 4 - Needle biopsy performed

Jan 11 - Doctor calls with results, nsclc and provides name of cancer speciallist for consultation.

Jan 24 - First available date for appointment with specialist. Makes appointments for PET scan, pulmonary exam and followup to PET Scan.

Feb 5 - Earliest date for PET Scan. Almost two months after xRay.

Feb 15 - Pulmonary exam - first available date.

Feb 19 - Followup consult with cancer specialist who said that it would take about two weeks to get results of PET Scan back (not two days that it appears is possible).

I am very concerned about what is happening with this condition and potential worsening over the two months that it is taking just to diagnose and stage the disease.

Any thoughts?

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I would be impatient at that schedule. In my case, I went from preliminary x-ray to ct to pet to surgery in 31 days, and even that wasn't quick enough for me.

BUT, when my surgeon called to give me the results of the PET scan, he had a full surgical calendar and told me that although he wanted to get to surgery without delay, these things don't change for about 90 days.

That always confused me though, because how did we know that we weren't on day 89 when we talked???? :?

I do have the luxury of living within an easy driving distance of several major teaching hospitals in Chicago, and I think that they manage things a little differently in urban areas.

Can you possibly get to a comprehensive cancer center in an urban area to get through things more quickly?

That waiting would make me crazy.

Best wishes and welcome to this wonderful site.

Cindy

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Hi and Welcome. I understand what you are going through. First of all...slow down and take in a deep breath. I know the feeling to have to wait. I know how you feel wanting to start knocking the dickens out of this beast called cancer.

There are many different types and combinations to fighting this. Be patient. Let the doctors get all the information to get the right plan of attack in place. A PET scan is necessary in order to determine if it has spread to other places and to determine what type of treatments/chemo to treat it with.

NSCLC is slow growing and has probably been growing for several years without you being aware of it. 3cm is equal to about 1 inch. Mine was 7 cm. I was dx in 3-03 and had surgery 6-03. I had my left lung removed. My first thought was...Hey come on let's get this thing out.

If you are not comfortable by all means get a second opinion. Get a 3rd if necessary until you are satisfied.

Come back and let us know the results of PET and plan of attack. we are here to help you if possible. Good Luck.

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I understand you are in a somewhat isolated area...but maybe if you get that "second opinion" started somewhere a little more geared toward being a cancer center, they may be able to move a little quicker, thus pushing off that first opinion crew...may be easier said than done.

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I don't know the rural area that you are in, but to me that time line is unacceptable. I had an X-ray on the 7th of July and started treatment on the 5th of August. In that period of time I had a pet scan an MRI, and a bronchoscopy, plus went to New York for a second opinion at Sloan Kettering. I have also had PET scans and have gotten the results the same day. Let us know where you are and maybe someone on the site can help you expedite you diagnoses.

Stay positive, :)

Ernie

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We found my mass (via XX-ray) on April 25, 1995. I went through 3 different biopsies over a 3 month period before we learned it was NSCLC Adenocarcinoma. My tumor was 3.4 cm's, and it had spread to 3 lymph nodes.

When they did my surgery on July 25, 1995, they staged me a IIIA-B (that is considered late stage). My surgeon was VERY UPSET that it took them that long to find out what I had. HOWEVER, I learned even in a big city, you don't get sick over the summer months. (vacations)! :roll: None the less, I am lucky to be here today. :D:wink:

My two cents worth is, if you have to drive to a bigger city, maybe you would be better off. I lived 80 miles from the Twin Cities, and all my doctor's when I was dx.d in 1995. The ride was worth well worth it for me.

I have to agree with Ernie that if this were me, it wouldn't be acceptable.

Good luck to you and please keep us posted.

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I am with Ernie-- it's too slow. Waiting could make a big difference in whether you are a surgical candidate. It would be helpful to know where you are -- others might have suggestions of places to go (I was about to say for a 2nd opinion but you don't have a first opinion yet). What helped us move fast was our PCP stepping in and making calls on our behalf. Maybe you could call your family doc and see if he can move things faster.

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I agree to slow. But dont always blame it on the doctor they only give the work to their office staff and it is their responsiblity to get things moving. I work for a doctor and know this. With my new recurrence I called every day to make sure those girls were getting what the doctor told me he was going to do, and I feel if I hadn't it would have taken longer. You are your best avocate its your body dont accept anything but the best....

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It does indeed seem like things are moving very slowly for you. You can see from my time line that it was exactly 2 weeks from the date of my first symptom to surgery. During those 2 weeks my PCP arranged for me to have a CT scan, a biopsy, a PET scan and a PFT (Pulmonary Function Test) as well as multiple meetings with the pulmonologist and the surgeon. My PCP was a real powerhouse driving things for me. He was pretty insistent that the other doctors should move quickly while I was still a stage 1. As it turned out I was actually a stage IIIa but that was not evident until a month after the surgery. One of the things I have learned at this site is the squeaky wheel definitely gets the grease. You may want to go back to you doctors and start complaining loudly. Particularly since it sounds like you may also be a candidate for surgery if they move fast enough.

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Hi glad you came to this board because you will get all kinds of advice and recommendations. From my first pain until my first treatment was about 6 or 7 months. Not the fault of the medical profession. Not knowing what kind of insurance you have I am not one that is going to tell you to go to a comprehensive cancer center or some other place that might not be covered by your plan. However, I will say if you are not comfortable with any doctor that is participating in your game plan then see if the insurance will allow you to go to a different specialist. Let us know how things go for you. You have found a group of folks that truly care.

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Welcome to the boards. I am so sorry that you need to be here though. No matter what...don't give up hope...as there are so many who survive this disease.

I don't know much about NSCLC, as my dad had Small Cell, but I can tell you that my dad lives in a rural area...I don't know where you are from, but my dad was in rural Nebraska, where had we stuck to their schedule, things would not have been as successful. We know that because of the "kind" of lung cancer dad had.

We took him to Mayo in Rochester, MN, where he received all of his treatments, and continues to go there for his follow-ups. We are so, so very fortunate to live close enough...only 5 hours.

Let me know if you have any questions. You might post also about where you live and there may be someone here who would know of a good doc in your area.

God bless,

Jen

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Agreed - way too slow. I went from CT to PET in about 10 days. While progression might be an issue, I'd be more concerned about your piece of mind (what stage is it? where is it? etc.).

I'm sure you can travel to a place with more equipment and more openings. If not, I'd call everyday for last minute cancellations.

Keep us posted.

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I think thd time frame may seem long but you will be treated for a very long time, The cancer probably took years to develop.

After diagnoais, in apr/may, Ihad radiation in jun,stereotactic radiation in Jul and chemo in aug. I had tests going on throughout the initial treatments. I have been on chemo eversince - going on 2 years.

Good luck.

Mary

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I'm in the "it's too long" camp and I also agree that getting to a cancer center would probably be helpful. My Mom had a CT 10/31, bronchoscopy 11/7, and a PET scan scheduled for 11/25. then there was a lag (in fact it took 2 weeks for her pulmonologist to call her back with the results- by then she had faxed her info to Dana Farber, gotten an initial visit, and a schedule to begin Chemo the next week.

The efficiency and speed with which Dana Farber has been moving has impressed me from the start. so, again, if a mmajor cancer center is an option for you, I think that'd be a good place to get a second opinion, and maybe your treatment.

Good luck

Jen

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Guest dsrtrat011

Thanks all for your words of wisdom. We live in a small community about 70 miles from Kingman AZ where all of the medical facilities are available. Same old story for small towns like Kingman - lots of population growth and medical availability not keeping up.

I have called the Mayo clinic in Phoenix (300 miles away) for an appointment and was told that they would return my call in 7-10 days. Even that seems to be slow.

Going to rattle my PCP's cage and see if he can get something done.

Thanks again,

Jim

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I'm in Mesa, AZ and go to Mayo Scottsdale. I wouldn't think it would take them that long to return a call. They're much faster for me. I'd call back and talk to some different people maybe. Or go to the ER with symptoms. I was admitted to the Mayo hospital through my PCP and had my diagnosis within 2 days. My PET Scan was done the next week and I met with my oncologist that week as well. I don't get surgery unfortunately, so I don't know how long that takes to schedule. Good Luck - Also, just a thought - what about calling the University Medical Center in Tucson. I know it's further, but if you don't get anywhere with Mayo, you could try there.

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First, welcome to the boards and so sorry you had to find us. As you can see, this is a very good place to get a lot of information.

I'll throw my hat into the too slow ring also. My husband's time frame was 30 days from initial x-ray, TB tests, broncoscopy, Lung function tests, Lung specialist visits, Surgeon visits, CAT/PET scans to surgery for diagnostic purposes. We felt it was too slow even at that! The oncologist visited him the night after surgery in the hospital to set up the game plan. He had his first chemo 2 weeks after surgery. AND his was very late stage all over both lungs -- so he had no chance for surgical removal.

Start screaming and yelling (in a nice way :wink: ) to get some action somewhere! It is the squeaky wheel that gets the grease.

Please keep us posted and best wishes for a surgical solution.

Welthy

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I live in Michigan. My second opinion was in Houston, at MD Anderson.

Upon returning from Houston, we (my oncologist, husband and I) decided to go through radiation. The local radiation oncologist just couldn't seem to fit me in. Once upon a time, I would have just taken that answer and meekly waited for a phone call...

BUT, I called their office every day and/or stopped in physically and asked why I had no appointment yet. I had been given a window by both my oncologist and my second opinion of three weeks after surgery and we were rapidly approaching it...

What did it take to get this guy to see me? Calling my insurance company and another hospital for information on self-referrals. He called me back the very day I arranged for an appointment elsewhere - I went with him only because it was daily, my husband had to leave work to get me to treatment, and the first guy was local (the other place was 30 miles one way)...

Call every day. Arrange for a second opinion. If you want to go somewhere farther away, call the people at Corporate Angel Network. They arrange free flights for patients (and a caregiver, most times) through donated seats on private company planes. That's how I got to Houston...

One thing to remember, though, is it's one thing to schedule a surgery with a place far away, another thing entirely to have to do daily treatment like radiation...and a high cost to stay five days a week.

My suggestion would be to leave your area for your first opinion so you can get in NOW, see what the place "far away" says about timing and then decide on if you want another opinion from another "far away" or if you have time to wait for the local guy to get around to seeing you.

Timing IS important. The "visual" of my tumor led the surgeon to guesstimate stage I, MAYBE stage II - after surgery, I was stage IIIa.

Might as well take a deep breath and jump in, they aren't going to be beating YOUR door down to treat you. (Remember the same lesson if you have issues with an insurance company - keep calling and keep submitting any refused bill with a letter requesting information on why it was refused.)

Good luck to you!

Becky

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Hey Jim,

I just wanted to extend my welcome and well wishes. It does seem very slow to me and sometimes you must be the squeeky wheel in order to get things moving.

Also, get copies of everything- so at any time you can send your dx. and treatment history to other facilities by fax/mail/e-mail...many facilities will give second options or offer options based on your medical record (since you are in a rural area, this might really help)

Keep us posted. I hope things get moving for you soon.

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