Mets again.

[michka]

I just came back from my liver MRI. My onc had asked for one as a control when I saw him 3 weeks ago. I am seeing him again friday for my herceptin infusion and to talk about chemo.
Well, I have 2 other mets 20 and 18mm! And the doctor was so embarassed I had to get mad until he told me that these mets were visible on the MRI I had end of november (I had brought the MRI with the CD) I had done the MRI in another place.
I just can't believe this! More mets. I went through surgery, had complications for nothing.
In Novembre, I had first a Pet/scan, then a scan then a MRI. They all only mentioned one tumor.
A month and a half later, this doctor tells me the november MRI showed the 3 tumors and that the 2 remaining today were smaller but very visible.
I knew Pets could give you false positives but false negatives? How come they didn't show up on the Pet?

And now what? I was happy this morning because I had the results from blood work that showed that all my liver parameters were back to normal (they doubled after my operation) and that the slight increase of my CA15.3 markers was going down.

I am really devasted. Sorry for complaining but this is another blow. I think I am going to look for RFA or Cryoablation this time.
I had a mammos for nothing and now MRIs for nothing...
Michka.

[ElaineM]

First of all you have a right to be upset about the recent news. Take a deep breath and relax a bit before you jump into action.You have a day or do before you have to decide what to do about the problem.
I would suggest getting copies of all your test results as soon as your doctor does, so you can read them and look up any words you don't understand in a dictionary. That way you can start thinking about what you would like to do if there are problems and you are ready to discuss the results and/or medical options with your doctor right away. With both you and your doctor getting copies of all the reports it reduces the chances of missing something or your doctor forgetting to tell you something. Some places charge extra for that service and some places do not. I get copies of everything and find doing that very helpful.
You might also want to think about getting a second opinion or interviewing another doctor about your situation.
A Pet/CT technician once told me that tumors don't usually show up on the Pet unless they are about 6mm and metabolically active (I think this means an suv over 3.0.).
Take care and good luck to you.

[Mary L]

Michka, I agree with Elaine about getting copies of your reports. I did that and I was glad I did. You were more aware of what was going on and after all, it was your body they were talking about. I also would get a 2nd opinion. Best wishes, Mary L

[Joan M]

Michka,

I'm sorry that you are now hearing about these two extra mets. I had a similar experience with my lung nodule.

When I was stage 2b I had a PET/CT that was okay. Then, about seven months later I had another one which showed a 9 mm nodule that lit up in the PET part of the scan. As it turned out, that nodule appeared as 5 mm in the CT part in the first scan but it was never reported. My oncologist explained that sometimes radiologists will ignore anything that doesn't light up in PET, since it's basically a PET scan. I was really very angry, as well.

If you're still interested in RFA or cryoablation, try to contact the doctor I recommended in the PM I sent to you before your surgery. The interventional radiologist who did my lung RFA wrote in an e-mail to me: "there is a fabulous IR doctor in Paris named Thierry DeBaere at IGR," when I asked him for a recommendation in France. The IR doc who did my procedure is at a major cancer center in NYC. These are top people in the field. My IR doc also ablated a 2 mm nodule in the area just in case it was cancerous.

I'm sorry that you went through the surgery to find two more mets that were there initially. It is a very frustrating. How were you supposed to know? How was I supposed to know? I wonder whether the two smaller nodules are in the same area of your liver.

Please let us know what happens.

Joan

[Pam P]

Michka - Sending you my positive thoughts and wishes for the best way to treat these new mets. Pam

[michka]

Thank you for your answers. I have all the copies of myy exams. In France you wait and then see the doctor and leave with the reports. There is nothing more to understand. It even says the 2 remaining mets are not new and detected on the November MRI. One is even in the same part as the tumor they took out.
The surgeon had told me he did an echo during surgery and found nothing else.
Joan, I will try today to get an appointment even before talking to my onc. It is very difficult but must be better than in December.
I cried the entire night. I had managed to get a hold of myself and now I am a wreck again. Michka

[Jackie07]

Michka,

Having had several recurrences of my 'slow-growing' brain tumors and always 'discovered' them by myself, I understand your frustration. There was so much blood during the surgery, the doctor just couldn't get a clear picture.

Couldn't they do another Laporascopic surgery to get the two tumors out?

Herceptin/Tykerb combo is supposed to be very effective. I remember reading someone's liver mets responding to each of the two medicine. So perhaps after the two tumors shrink some you can have another surgery to get them out.

So sorry for the disappointing news. But there are options. So hang in there.

[Ellie F]

Michka
I am so sorry to hear this news especially as I remember feeling really happy following your surgery. I totally understand your devastation and feeling of 'wasted' tests ( I also had a mammo that failed to show a large tumour!)
i think exploring other options makes sense now.France seems to have a good reputation for treatment and Joan has suggested a doc who sounds very competant.
Hang on in there. We are with you.

Ellie

[KDR]

Michka, I sympathize with you, this type of news is devastating...we will be with you through it all...I, too, would investigate Joan's recommendation. Let us know, Hugs, Karen

[tricia keegan]

Michka I have nothing to add except to say how sorry I am this happened and send you good wishes. ((((hugs)))