Recurrence of NSCLC after Lobectomy and Chemo--What Options are Available - 1248866

beachgail
Posts:6

Background: Had upper RL lobectomy in August 2010 followed by chemo (Cisplatin and Alimta--three rounds) for NSCLC--Adeno with BAC features. Was dx. 2B as there were two adjoining but separate tumors, total size together under 5 cm. No involvement in lymph nodes. Tumors had been in me for almost three years prior. Previously, had a partial hysterectomy in 2007 whereby the chest x-ray for admission for surgery was not clear. Therefore, had a CT scan which said infectious or inflammatory process. Follow interim to conclusion. The nurse said to me by phone in 2007 that it was scar tissue. Unfortunately, the CT report was never forwarded on. By chance, primary doctor ordered a chest x-ray in June 2010 which was not clear, then CT scan, followed by surgery and chemo. Since then, all scans have been clear until October 3. CT report says: New 10 mm x 10 mm x 15 mm semisolid nodule in the superior segment of the right lower lobe, possibly with some internal cavitation. While sequela of infection could produce these findings, neoplasm of either recurrent or second primary bronchogenic carcinoma is possible. Followup examination in 3 months is advised. Before requesting report when in the surgeon's office, I asked what was next. Essentially, if tumor in December via CT scan is larger, he would do a biopsy. Pressing more, he said that he would then suggest radiation. Now the questions: (1) Should I get a second opinion and what type of physician--surgeon, radiologist. (2) What options are available--resection, radiation--if so, what type. (3) Would prefer to skip the second CT scan and have the biopsy now rather than wait and be caught in the holiday vacations of many medical staff members. (4) Should I try an antibiotic? I really had a lot of sinus and allergy issues last month, plus exercised too hard and think that maybe I tore a muscle which is causing a bit of burning in my chest. (5) If cancer, what is the survival prognosis?

Gail

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Reply # - October 10, 2012, 05:15 AM

catdander
Posts:

Hello Gail, I'm sorry you're going through such a frightening time...again.
It has been suggested that anytime you have questions about treatment or recommendations you're not comfortable with then it's time to get a second opinion. Specifically from a large research hospital with a specialty in thoracic cancer by an oncologist with an expertise in lung cancer.
This is an excellent blog post on second opinions http://cancergrace.org/cancer-101/2011/11/13/an-insider’s-guide-to-the-second-opinion/

I have to agree with you that antibiotics would be a good idea. Your scan could have picked up an infection.

If you have a recurrence of cancer and it is slow growing and very small you may be much better off later by doing less to begin with. A biopsy would be difficult if at all possible on a nodule that small and an open surgery would be quite invasive.

I will contact our BAC specialist to give you some input on how aggressive he gets in situations like this.

I hope all will be well,
Janine

Reply # - October 10, 2012, 06:23 AM

beachgail
Posts: 6

Dear Janine,

Thank you for writing with such vital and comforting information. I do look forward to hearing from you concerning the BAC specialist. Honestly, I thought I was fine; so, this is really a shock again. I know less is best with watchful waiting. However, I had the past CT six months ago in April, and it was clear. I sounded pretty scattered in m above post but am focused again. I need a plan and a backup plan, i.e. second opinion, all possible treatment options. I live about an hour plus from Johns Hopkins, which is not the hospital I used for the 2010 cancer. However, I definitely would consider driving to that location for a second opinion and/or medical treatment. MD Anderson is the supposedly the best but don't know if it is practical.

Gail

Reply # - October 10, 2012, 07:24 AM

catdander
Posts:

I'm sure Johns Hopkins would be a really good choice for a 2nd opinion. Once you've heard what both have to say there usually isn't a problem staying near home for treatment. As it turns out most doctors work pretty well together in this type of situation. Also the better a patient is informed the more choices seem to open. You become part of the discussion and decision making process.

And you didn't sound scattered in your earlier message. I can't imagine being in your place.
I hope all is well,
Janine

Reply # - October 10, 2012, 07:45 AM

Dr West
Posts: 4735

Gail,

I'm sorry to hear about these new, worrisome findings. Unfortunately, it's not legally feasible for us to give you medical advice about what to do, and there are a few too many variables to give you a prognosis. I agree that antibiotics would be very reasonable, especially if you have had recent symptoms suggestive of a possible infection. And since you say that you actually have had some of these symptoms, that argues the potential value of repeating a scan after a course of antibiotics -- if that area improves, it makes the possibility of cancer MUCH lower.

I also agree a second opinion would be reasonable. A pulmonologist or possibly oncologist would be the person most relevant for the question of how and when to work this up further. If cancer is diagnosed, a radiation oncologist and thoracic surgeon could discuss the potential roles for radiation and surgery, respectively, which would be an open, debatable question. A medical oncologist could also potentially provide a perspective without a vested interest in either strategy.

If surgery were to be considered, the preference would generally be to avoid doing another lobectomy, since there's only a finite amount of lung tissue to remove. A wedge resection or segmentectomy would often be favored if the location of the lesion is amenable to that. This is one of the factors that could be valuable in considering radiation vs. surgery.

Good luck.

-Dr. West

Reply # - October 10, 2012, 07:45 AM

beachgail
Posts: 6

Dear Janine,

I am still interested to hear what your BAC specialist has to say. I requested another appointment with my surgeon which is this Tuesday. Also, I don't know what department of would call to make an appointment at Hopkins. Any ideas? Will see primary doctor tomorrow about an antibiotic.

Gail

Reply # - October 10, 2012, 07:59 AM

beachgail
Posts: 6

Dear Dr. West,

This is a WOW! Thank you for writing to me. I have been following you and Cancergrace.org since July 2010, staying in the background as a reader and not a participant until yesterday. Cancergrace got me through my cancer surgery and chemo with its honesty and up-to-date factual information. Thank you so much and thank you again for writing to me. I need to learn how to deal with cancer or the possibility of the recurrence better as it is again consuming my life. Although no one would say, I speculate that my lung cancer originated from the old CAT monitors as I was a computer software teacher from 1983-2006 with 25 computers/monitors in the room. I was not a smoker. Anyway, I would prefer to see one of Cancergrace's specialists, if not you personally for your professional assessment, which may not be possible--Seattle--so far away. Are there staff members near the metro area of Pennsylvania/New Jersey/Delaware/Maryland area?

Gail

Reply # - October 10, 2012, 05:12 PM

Dr West
Posts: 4735

I'm starting a telemedicine service right around now if you're interested in a consultation with me. Otherwise, there are certainly great people at Penn (Dr. Corey Langer, Dr. Tracey Evans) or Johns Hopkins (Dr. Julie Brahmer, Dr. Charlie Rudin), and that's not a complete list.

-Dr. West

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