Palliative vs. Curative Intent
 

I'm thinking a lot about this topic because of my own story. I am Stage IV and was that way at diagnosis. After over three years of metastases in my lower lungs slowly getting larger and causing more trouble for me, the cancer in my right lung finally caused a trip to the ER. It was blocking the airway, and I ended up with pneumonia (in June). I've been on three rounds of antibiotics since then. I have been asking or wondering about local treatment for my lung mets for at least 2 years. Last October a scan showed no detectable cancer in my body except in the lungs, and that was getting better. Last January there was still no detectable cancer anywhere but my lungs, but they were lighting up more.

Fast forward to this August. My medical oncologist referred me to radiation oncology, and I'm halfway through a 12-round course of radiation to my right lung, to correct the cause of the pneumonia and hopefully eradicate the cancer. The radiation folks said if it goes well in my right lung they can do the same thing in the left lung later.

It occurred to me that if radiotherapy is a good idea now, it would have been an even better idea 9 months ago, when I was younger and not battling a chronic bacterial infection. I saw my NP today and asked her about that, trying not to sound critical, but just wanting to know. She asked the onc and came back to report that the reason for waiting is "We can't radiate everything."

I don't really consider that an answer. At that time chemo (Abraxane, Herceptin, & Perjeta) had been effective for everything but the lung tumors. I think that would have been a perfect time to go to a targeted treatment. Of course you "can't radiate everything." But my only "thing" at the time was the cancer in my lower lung lobes.

The folks in radiation oncology explained that for various reasons lung tumors are hard to control with chemo. They know how to handle them with radiation. They told me there are studies showing good results for patients like me who are on the same treatment plan as I. Other cancer centers have gotten measurable benefits from using local treatment on metastases of all kinds.

I think it comes down to how one defines "palliative intent." I seem to have a more robust, proactive view of it than my oncologist does. I don't think I should have had to get sick before she recommended a new treatment modality for my chemo-resistant lung mets.

I think "palliative" means "do all you can, within reason, and consistent with maintaining quality of life, to control the disease and keep the patient as healthy and functional as possible." I don't know how she sees it. I just see a very large amount of territory between "we can't radiate everything" and what happened to me.

I can't go someplace else because here in the Wild West my cancer center is basically the only game in a gigantic geographical area. When I was in Boston I had tons of choices. Here I actually tried to get a second opinion, and the people at the other doctor's office were so inept and unhelpful about getting together my medical records in advance of the appointment that I gave up and canceled it.

Re: Palliative vs. Curative Intent
 

Thanks for sharing this information. You raised a lot of good questions. Why wasn't radiotherapy recommended sooner? Seriously, " we can't radiate everything"??? I pray you get good results. We all must be vigilant in advocating for ourselves.

Re: Palliative vs. Curative Intent
 

I'm sorry, Amy. It really does sound as though you were mismanaged. I was offered radiation for a painful bone met. The intent wasn't curative, it was to offer relief. You should have been offered radiation for relief of local disease, to make you feel better, not cure you. That's my understanding of palliative care.

Living in the sticks, I guess you will have to be ultra diligent in advocating for yourself. I'm sorry that is the case. Is there no one else you can see?

Re: Palliative vs. Curative Intent
 

It's not exactly the sticks. It's Denver, Colorado. But our population density is much less. And I'm lucky. I live about 15 minutes away from the hospital.

When I raised the idea of local treatment to the lungs in Boston, the NP I was talking to said, "They don't do that with Stage IV." I knew then that was flat-out wrong. I had been reading about studies of the efficacy of local treatment at places like M.D. Anderson. So it's not just because I'm now more geographically isolated.

Palliation isn't just about pain relief. It's about trying to optimize available resources. But not everyone sees it that way.

I don't know if it came from the medical onc, or it's just standard practice, but when I first met with the radiation onc they were thinking they'd do a short course of radiation with a low dose just to make me more comfortable for a few months. But after talking to me awhile the resident said, "You look really good. You don't look like you have cancer. I have to clear it with my attending, but I think we should try to eradicate the tumor." He went on to say there was a bit more risk of side effects, but he thought I'm a good candidate. His boss agreed.

Chemo was making me pretty darn sick when I quit in December. I felt awful for at least 10 out of every 21 days. After the March scan my medical onc wanted to put me on Gemzar, with a three week on, one week off dosing schedule. I said we should save that for later, and opted for just Perjeta and Herceptin for awhile. I wanted to get my strength back and let my immune system rebound.

I didn't think about local treatment in my lungs at that time because it wasn't raised as a possibility. I'm glad I was eventually sent over there, and I'm optimistic about the outcome.

Here's the point: What could be more "palliative" than eradicating the cancer and avoiding consequences like pneumonia by using a safe, effective, standard treatment modality? There's overlap between "curative" care and "palliative" care. Taking reasonable steps to put me into NED territory would be pretty frickin' palliative, in my view. And I'm still hoping for that.

Amy

Re: Palliative vs. Curative Intent
 

Hi Amy,
Glad to hear you are finally getting some localized treatment for your lung mets. Unfortunately many oncs are behind when it comes to treating stage IV patients with oligometastatic disease.

you and I definitely fit in that category, and it is up to us to push for treatment, as it only makes sense.

https://moffitt.org/media/4879/21.pdf

When I had my last recurrence to the peri rectal area of my abdomen, I immediately asked about getting SBRT to the area. My onc presented my case to the radiology docs, and it was their opinion that my tumor was too close to the bowel to receive radiation, because of possible complications. Fortunately the Kadcyla has taken care of the tumor and nearby lymph nodes that were lit up.

My next scan is in Oct. and you can bet if any new mets are present, I will be touting the "whack a mole" strategy that our dear Brenda used to call it!

Kim

Re: Palliative vs. Curative Intent
 

Hi Amy & Kim

Totally with you on this.

Love the "whack a mole"

Re: Palliative vs. Curative Intent
 

Amy,

It seems your pneumonia has been a blessing in disguise! I agree with all you have said. If a person wants to fight a multi-front war and has the health and pluck to do so, then why are docs making that arbitrary call without consideration to what a patient wants? It just seems so arrogant. I wonder if when seeing a steady stream of cancer patients oncologists get jaded (and maybe discouraged?) and battle their own demons of despair?

Anyway, Brenda was right. Whack those moles and keep whacking them until YOU have had enough of the game or have won it and clobbered those moles/mets into oblivion. I will pray the radiation whacks the #@%^ out of those moles! Good luck, Amy!

Re: Palliative vs. Curative Intent
 

Thanks, everybody. I appreciate the encouragement, and the research paper from Kim. The paper is very informative and helpful. The radiation people haven't told me the type of radiation they're doing, but it's like what the paper describes.

I am, indeed, oligometastatic. I haven't spent much, if any, time at NED, but I've had pretty good control over everything but my lungs. Initial mets were to lungs and liver. Liver mets cleared up on first round of treatment and have stayed gone. One bone met surfaced while I was getting only Herceptin and Arimidex. I'm no longer ER positive, so hormone therapies are out for me.

My med onc is young and seems pretty positive and optimistic, but I had the pneumonia in Philadelphia, so she didn't have direct data. The hospital in Philly sent my records to her. But the first time I saw her after I got back she was questioning whether I had "really" had an infection. Did I have a fever? (Yes) Did I feel sick? (Yes, horrible) Did I get better with the antibiotics? (Yes indeed) She also chose that session to ask about end-of-life planning and recommend I meet with the palliative care team.

That had me a bit freaked out. And the feeling isn't entirely gone. The NP I saw two days ago again asked questions directed at the "Is it really an infection or is the cancer getting worse?" question. The Philly hospital did a sputum sample. Seems like that would confirm the infection. Plus I've had two flare-ups since June and have responded well enough to antibiotics to keep me out of the hospital.

My medical onc didn't refer me to radiation oncology until August 5. I was leaving the next day for 11 days, so I didn't have my first consultation with them until August 22. I started radiation treatment September 6.

I have always realized that I am the one who cares the most about my own health, and I am the one who knows my body best. I don't mind being in charge, and I often take charge. My NP seems to be more on board with a "long view" management plan for me than her boss does, and I see the NP every three weeks (though she's about to go on maternity leave, so I'll have a new NP for a few months.)

Onward. . . .

Re: Palliative vs. Curative Intent
 

Amy,
I'm with you - they should have offered a whack a mole approach BEFORE you had the pneumonia. I think that my onc has the bar too low (at least that was my daughter's observation a few check ups ago) and I agree.

I think the onc's compare us to other St4 patients, and think we are doing well. BUT--we want to be doing EXTREMELY well - NED, or NEARLY NED!!

I've been having trouble with bruising, and went in Monday for a blood draw. My NP was supposed to speak with my onc about my excessive bruising. Long story short, I've had to send two emails, the last one on Friday saying, "did you overlook this"? to my onc, who responded by asking for a list of all my meds including supplements saying they'll do a blood check next time I came in. LOL. Aren't all my meds on her computer and in my chart??!! I called her out and said my NP was supposed to talk to her last Monday, when they did a blood draw!! And my onc is a leading nationally recognized doc, but she's busy. LOL not but oh my - what the hell are we supposed to do other than keep on self advocating?!

Anyhow, I have a feeling they won't find anything to fix, and this is what happens after many years on vitamin H, Perj, AVASTIN.

I hope that you will respond to the antibiotics. I also have lung mets, slow growing, nothing is NED in me. Cancer is crap. Except for the people you meet along the way...
xo xo xo xo
Flori

Re: Palliative vs. Curative Intent
 

Yes, Flori, "except for the people you meet along the way." You're a gem. I've met many others.

Love and light,
Amy