How can you tell if it's necrosis or cancer?

[SoCalGal]

My lovely doc called tonight, with the results of today's PET-CT. Good news is no change at all on the CT.
BUT there is "mild worsening" in the sternum/manubrium bone met zone which my doc said could be necrosis or could be active mets. I am seeing her tomorrow afternoon, so I thought I'd sort my issues out here and see if anyone has any ideas for me to discuss with her. I don't think she wants to change my regime but I am worried about this increased activity. Here are the facts:

1. SUV=5.8 Last time the SUV was 4.2 so it's not a tremendous jump in metobolic activity. I finished rads in April of this year.
2. Can an MRI show bone tissue necrosis verses bone mets? Maybe I should have an MRI of that area.
3. My markers have returned to normal and remained normal since September
4. Brain NED
5. All the rest of me = NED
6. LVEF = 74% so I'm fine on current regime - herceptin, tykerb, zometa, avastin & 54,000 vitamins
7. RFA was not an option in April - area too diffused but maybe I should re-visit the idea?
8. I'm not gonna be a good candidate for a clinical trial w/bone mets, right? (TDM1)

Eating marshmellows and trying to have nerves of steel.
Thanks truly, really, for any ideas, input or things I should ask the doc.
Flori

[Joan M]

Flori,

Sorry that the area of your sternum is questionable.

Is it possible to biopsy the sternum?

Also, I think that an MRI could get a better look at the morphology of the area, rather than a PET/CT, since the CT part is without contrast.

I'm happy that you're doing really well otherwise, and hopefully the enhancement is just tumor necrosis from the radiation.

Joan

[Joan M]

Flori,

Also, forgot to mention a bone scan as a way to distinguish between an active tumor and necrosis.

Joan

[SoCalGal]

Thanks, Joan. I'll ask her about the bone scan and also discuss a biopsy. I will probably need to talk to my uber surgeon for a weigh-in. I hope you are feeling as good as you look in your photo! xo

[BonnieR]

Nothing to suggest but just offering support. And I think your choice of treatment for tonight, marshmallows, is a very good one.

ETA: keep the faith.

And your rolling over dog photo is great. I love when they do that!

[Chelee]

Flori, I don't have much time because I have surgery in the morning on femur...but real quickly wanted to say Dr. Slamon was going to have me in a TDM1 trial and I have bone mets to femur, ilium, & sacrum. So I don't think that will disqualify you. I also agree that a bone scan and hopefully a bisopy of the area would give you a answer that you need. I'll be praying that it's necrosis. Hope all turns out well.

Chelee

[StephN]

Flori -
I have a friend in T-DM1 trail in Idaho and she has bone mets as well as the nodes.

I think Carolyn from Florida who is in Detroit T-DM1 trial also has bone mets.

Hoping for the best with the sternum question.

[Pam P]

Flori - I think since your tumor markers have returned to normal that is good support for necrosis not activity. If an MRI can distinuish that I'd ask to have that done. As far as the t-dm1 trial some trials require 'measurable disease' of which bone mets don't qualify, but there are some more trials now that will take 'non measurable' if you fit the other criteria. I have bone mets and have been searching for a long time for a trial that will fit me with no luck. Nothing in my area of Minneapolis, some in surrounding states, but so far no luck making connections.

If more investigation shows no increased activity I agree with your doc to stay on the current trt at least for now - it's working. Save the t-dm1 for down the road if needed.

[ElaineM]

Can they biopsy something like that? If so, I would try it.

[Laurel]

Flori,

I do not know what can differentiate between necrosis and mets, but I think it is a positive sign that your markers are remaining stable. The marshmallow therapy has got to be a good one. Please keep us posted on what you learn tomorrow.

[SoCalGal]

I wish I had learned more than I did. My oncologist said they really cannot differentiate between necrosis and mets at this point. Until more "clues" appear, ie: pain, obvious changes on the CT scan, huge increases in SUV we won't know. And mostly there is no reason to push to find out because I am doing well on my regime, and there is nothing else to switch it up with at this time.

I am going to have a bone scan, my last one was about a year ago, so maybe that will provide more clues. And then I will have a consult with the radiation oncologist, to better understand EXACTLY why I am not a candidate for RFA. In April she said the area was too diffused for RFA. My Onc said the area is not really showing diffused but that my heart sits too close. Full surgical biopsy too risky and since there is nothing to do about the results, not worth the risk, pain, etc.

The news that TDM1 will be presented at San Antonio literally made me cry. That TDM1 COULD be in the marketplace as early as 2010 gave me such hope.

Right now I am working on having nerves of steel. Getting wrapped around the unknown. NOT GIVING UP on the possiblity that "all" I have is necrosis which would also mean I am in remission for now. That is the shoe that fits my gut feeling the best!

Thanks for being the best support team in the world.
Flori

[Ellie F]

Hi Flori
Nurture the gut feeling and hold onto the hope.
I ,like you am encouraged about T-DM1 especially as it is now in trials in England. So often it's so disheartening when I read about advances in the States and then find out that they are not available here (tykerb being the best example)
Cheers Ellie

[Joan M]

Flori,

If you're thinking about RFA, speak specifically to an interventional radiologist. That person would know for sure.

And, yes, I would agree that the announcement about TDM-1 seems sent directly from heaven.

Until then, just keep thinking necrosis, necrosis ...

Joan

[Kim in DC]

Flori,
I got into the the TDM1 trial with a bone met in the sternum. I progressed to a soft tissue met while on Tykerb and that allowed me to qualify for TDM1. After one year the soft tissue met has shrunk but the sternum met has remained the same. I believe both are necrosis because early in my treatment, I would feel severe pain. They both showed up the same on the ct scans. Now, tumor markers are good (they've been very accurate in the past) pain is gone but ct scans still show the same.

Kim