Joan? Any Decisions?

[MJo]

Have you made any decisions about how to treat that pesky lung met?

[Joan M]

Hi Mary Jo,

Last Thursday I decided on radiofrequency ablation but it's not yet official, meaning that the intervention radiologist hasn't phoned back yet to answer a few more questions even though I called his office last week.

I called again today but still haven't heard.

Despite the recommendation of the oncologist at Sloan-Kettering to treat the nodule with systemic therapy, the surgeon there said she would do a lobectomy if I wanted, and that's what got me thinking again about RFA.

I really don't want to do a lobectomy. If I have a propensity for mets in the lung, then what happens when they start to appear in my right lung, and my upper left lobe, or two-thirds of my left lung, is missing.

I wanted the surgeon to do a segmentectomy, preserving the lingula, which is a vestige of the middle lobe (the right lung has a middle lobe but the left doesn't), but she felt that anything less than a lobectomy would result in a recurrence.

I understand her reasoning, but I don't have primary lung cancer, so there's a high probability that I'll have other lung mets.

My oncologist prefers chemo (Xeloda added to the Herceptin) or a lobectomy. She's not in favor of RFA, saying it's not standard of care, and was really warning me away from it.

I actually think it's a good option even though the outcomes aren't that good. It can treat the nodule locally, extend time to progression. It doesn't discriminate like chemo -- it burns off cancer cells regardless of the idiosyncracies of genetic makeup. Also, my nodule is less than 1 cm, which favors a better outcome.

I also think it has a palliative use for lung mets.

I know that RFA is used a lot for inoperable lung cancers, but since I have mets, it's not exactly an apples-to-apples comparison, even though I can tolerate the surgery.

Here's a recent news story on RFA which discusses outcomes: http://www.medwire-news.md/379/73940/Lung_Cancer/Radiofrequency_ablation_could_extend_survival_for_ inoperable_lung_cancer.html

I'm starting to get very anxious with all this waiting. The surgeon had the lab at Sloan compare my slides from the lung resection last year with the original slides from my mastectomy in 2003, had me meet with the onc there for his input, and then had me come back to see her again. This took almost a month. Then on top of that, my own onc went on a vactation for two weeks the day before I was supposed to meet with the surgeon again and I didn't see her until last Tuesday. And now that I've made up my mind, I haven't heard back from the radiation interventionist.

The onc at Sloan was not in favor of any surgery, he recommended systemic therapy to the surgeon, and some how I doubt that he'd be thrilled about RFA either.

How have you been?

I've been so busy working, running around to doctor appointments, and visiting my family in New Hope that I haven't even had time to send you the photos from Longwood Gardens. Then my girlfriend from Rome was here visiting. I've loaded the photos into my computer but haven't gotten a chance to really look at them.

Joan

[Jean]

Hi Joan,
The waiing is just awfull, I wish the dr's would understand just how distressing the waiting
is on their patients.

This may be a silly question, but have you considered
doing the RAF and the systemic therapy also, this way
the systemic therapy can be like an insurance policy
against any stray cells.

Wishing you the best.
Hugs,
Jean

[Becky]

God Jean! I was thinking the same thing. Do RFA and follow up by adding Xeloda to the Herceptin.

Joan - I live about 4 miles from New Hope (PA).

[jones7676]

Your plan sounds like a good one to me.....please keep us posted. Best of luck making the right decision.

[MJo]

Joan -- I was thinking the same thing as Jean and Becky about adding some chemo to the RFA, although I know you don't like the idea of being sick with chemo. We should all try to get together in New Hope or New York to have an RFA sendoff party for Joan.

[Barbara H.]

Hi Joan,
I also agree with taking xeloda to help protect yourself from further mets. My oncologist told me that if I had taken a lower dose I would have few side effects. I didn't take it because I eventually was accepted into the H-DM trial. Good luck with your procedure and consider xeloda. You can always stop it if it does not agree with you. Best of all, it might knock out the potential for more lung mets for good.
Thinking of you,
Barbara H.

[Joan M]

I've spoken to the intervention radiologist.

Earlier this evening I went for a long walk to the post office to mail a card and he called on my cell.

I felt immediately relieved to finally be making plans.

His office is going to call me tomorrow to schedule another CT scan since it's been a few months since the last one, and also to schedule the procedure.

My only concern is insurance coverage. My insurance is a provider as of April 1 but how they might consider RFA came to me only as an afterthought.

I looked it up on the net and there may be some difficulty related to my being physically capable of surgical resection. That is, the procedure seems to be reserved for those who can't tolerate surgery. I really hope I won't be disappointed now that I've made up my mind.

I'll have to find out more about it.

In any case, I am considering adding Xeloda to the Herceptin as was suggested, just as a precaution. My onc said she starts at 1,000 mg twice a day and if a patient can tolerate that she increases it to 1,200 twice a day.

I think it would be fun to meet in New Hope. I was there on Saturday but ate dinner at Bell's in Lambertville on the New Jersey side of the Delaware in Lambertville, just a few miles from Becky. And Mary Jo, this time we can meet in the middle ... Just kidding.

[Sheila]

Joan
I was on Xeloda 2500mg a day, and other than the foot issues, I had no problem....I agree with adding some chemo to the Herceptin after the RFA...extra insurance for you, and easy to tolerate.....