Scan results and further treatment

KsGal · 06-18-2012, 10:37 AM

My CT scan showed that I still have one tumor in my liver that measures right around 1 cm (10 mm x 12 mm). I was disappointed because, of course, I was hoping for NED; however, I am happy it has not progressed or metastasized anywhere else.

The doctor says just Herceptin now every three weeks, watch and wait. I asked about Cyberknife, resection, cryoablation, etc, of the tumor that is left and he said because I had what they think were some micrometastases before that do not show now, that wasn't really an option.

Being fairly new to the HER2 fight, I just wanted to ask if doing only Herceptin right now until it progresses seems like a fairly standard treatment, or should I get a second opinion? I guess it is weirding me out a little to just sit and wait for this thing to grow.

I asked for a copy of all three of my CT scans so far and PET scan, and also found out there were three small nodules in my lungs that were never mentioned to me at all, but also were not biopsied. They were seen on the CT scan, but not on the PET scan, although in the PET report it said they were probably too small to be detected. Not happy about that either.

chrisy · 06-18-2012, 12:13 PM

Hi,
My oncologists both had a plan to limit the length of chemo - either 6cycles or after "best response+1", then continue on herceptin alone. Remember, at stage IV this is a marathon, not a sprint... So yes, maintaining on herceptin alone if there is stability is not out of bounds as a treatment protocol.

I'm not clear - your last scan was in march, right? Ws it a PET or a CT? are there plans to do another scan after the chemo is completed? You want your baseline for"watching" to reflect pst chemo.

I think that there was residual tumor at the end of my 6 chemo cycles, but they thought it was dead tumor that had not been resolved yet - and that turned out to be true in my case. Which is why the question if it was a PET or CT; a PET would better id if you are dealing with a live met or necrosis.

I'm a big proponent of second opinions, and in your case I'd ask the RFA question again. They think there were micromets seems a weak argument, what is the basis for this- if there hasn't ever been evidence of disease? I mean, sure it got to your liver somehow but if that's the reason they suspect micromets then nobody ever would be a candidate for RFA to the liver. Maybe I dont have enough info and of course I'm not a doctor, but I'd get more clarification on this issue.

Lauriesh · 06-18-2012, 12:22 PM

Hi, I was thinking the same thing as Chrisy, that you should get a second opinion about the RFA, until you mentioned about the lung nodules.

When I had RFA almost a year and 1/2 ago, they would not do it if I had any signs of cancer anywhere else.

I don't know if most places are also like that, but it may be worth at least talking to an interventional radiologist and not trusting only what your onc says.

Laurie

BonnieR · 06-18-2012, 12:38 PM

I think second opinions are always a good thing. Even if you are told the same stuff, it is filtered through another person and can offer reinforcement and clarity. I think every conversation we have, we hear something differently and in a new light
keep the faith

karen z · 06-18-2012, 12:44 PM

I agree with others that a second opinion is always a good thing and gives one a chance to think more about and hear more about (maybe something different /maybe not) one's own unique situation.

KsGal · 06-18-2012, 01:45 PM

I know you all are not doctors, but with all the years you have been fighting this, you know a lot more than I will probably ever know.

I had a CT scan when I started chemotherapy (TCH) back in January. It showed the one tumor in my liver that is still there.

I then had a PET scan that showed the tumor and another area of hyperdensity with some low uptake and no nodules. My doctor assumed this was an area of micromets. They biopsied the one tumor, but nothing else as there was no nodule large enough to be seen elsewhere in the liver.

I had a CT scan 1/2 way through chemotherapy that showed the tumor had shrunk, and showed nothing else anywhere in my body. Had another done last week at the end of chemo, and it showed the same tumor in my liver that had shrunk a little more, and nothing else.

I did not know anything about any nodules in my lungs at all until I read my own CT scans after asking for copies at the doctors office this morning. The original scan showed three nodules in my lungs. It is mentioned again in the PET scan I had immediately after, but it only said they were basically too small to fall within the range of the PET scan. They are never mentioned again in any reports, and were never mentioned to me at all.

I don't know what any of your doctors are like, so I don't know how to compare mine. He is supposed to be quite good. Mine has a TON of patients. He never remembers who I am when he sees me. He reads my chart in front of me, and always acts surprised to find out it is in my liver and I am stage IV. He asks me what I think are ridiculous questions over and over at every visit, like what side my BC was on, if I still have my primary tumor (I had a double mastectomy). A couple treatments ago he said I could not delay a chemo treatment due to an infection because "you have it in your lymph nodes". I said, I have it it in my liver and Im stage IV, and he looked completely surprised. I don't know if this is just how it is because these doctors have so many patients or what...but sometimes I honestly feel like I am learning things here on this site, and then I am going back to him and guiding my own treatment. I want to put LOL, but its not really all that funny.

Sorry for the crazy rant...I just get frustrated. Im thinking of sending all my records to Cancer Treatment Centers of America for a second opinion. Thoughts?

karen z · 06-18-2012, 01:53 PM

"He never remembers who I am when he sees me. He reads my chart in front of me, and always acts surprised to find out it is in my liver and I am stage IV".

What you are describing has NOT been my experience and I wouldn't be able to handle it. I would seek a second and third opinion and throw out a feeler to the board to see who knows of top notch doctors (with memories) in your area of the country. You do not need to put up with this.