TOTAL SHOCK

oska

I posted earlier today about my abdominal discomfort, well I got to see my G.I. doctor,asked him if he had received a copy of my CT scan report,he started to read it out loud.
No findings to suggest recurrent disease or metastases. Then something I was not told a 2cm hyperdense mass within the anterior cortex of the upper pole left kidney favoured to represent a hemorrhagic or proteinacesous cyst. Ultrasound or pre and post enhanced MRI scan correlation is suggested. No one suggested it to me.Also a tiny 3mm decreased density lesion within the left lobe of the liver is too small to characterise. The CT scan was on the 8th April its June 24th. It was to late in the day to call my oncologist office, and when you do call you have to leave a message and do not get a reply till late afternoon. I am at a complete loss why I was not told about this, do you think I should push for a Pet scan? So much for dancing with NED.
Love to you all Oska

kayandok

So sorry for your
bad news. It does sound like the spots are small and chemo should be able to get them. You were NED since February, so probably no carbo or cisplatin, but I'm sure your gyn/onc will recommend a good cocktail that will zap them right out.

Usually they don't like to do scans less than 6 months apart. PET's are good for getting to the mm's size and for pre-surgery to know exactly what they are dealing with. But, they actually can monitor you pretty well with the CT. (It sounds like you had a CT with a small grid if they can see a 3mm size lesion.) That being said, I always try to get a PET/CT if I can. It is a 50-50 deal.

Do you trust your gyn/onc? Is it worth getting a second opinion? The gyn/onc team is the most important piece of the puzzle and along with that you have to be your own advocate. That includes finding out why you didn't hear about the MRI recommendation. (I always get a copy of everything that goes into my records, including a copy of the scan results, and try to study it for myself.) This might have been a "someone forgot to send you a copyP" type of thing, but holding them accountable will only work in your favor. That is my "teal warrior" mentality anyway.

Don't let this knock you down for too long, pick yourself up and go fight warrior woman!!

Hugs,
kathleen

nancy591

disappointing
Disappointing, yes. The end of the world, no! We all have to hold on to hope. I'd too would be pretty ticked about the lack of communication. But, to late to for that now. I would have my gyn/onc do all my future monitoring.

I'm not sure what the kidney cyst could be. 3mm lesion in the liver is VERY small. Before you jump to panic mode, have a follow up done. Like Kathleen mentioned, a new cocktail can knock it right out IF it turns out to be cancer. See what your gyn onc recommends for follow up. Stick to one location to monitor you from now on.

Keep hope, Oska. Let us know what happens.

XOXOXOXO

oska

kayandok said:

So sorry for your
bad news. It does sound like the spots are small and chemo should be able to get them. You were NED since February, so probably no carbo or cisplatin, but I'm sure your gyn/onc will recommend a good cocktail that will zap them right out.

Usually they don't like to do scans less than 6 months apart. PET's are good for getting to the mm's size and for pre-surgery to know exactly what they are dealing with. But, they actually can monitor you pretty well with the CT. (It sounds like you had a CT with a small grid if they can see a 3mm size lesion.) That being said, I always try to get a PET/CT if I can. It is a 50-50 deal.

Do you trust your gyn/onc? Is it worth getting a second opinion? The gyn/onc team is the most important piece of the puzzle and along with that you have to be your own advocate. That includes finding out why you didn't hear about the MRI recommendation. (I always get a copy of everything that goes into my records, including a copy of the scan results, and try to study it for myself.) This might have been a "someone forgot to send you a copyP" type of thing, but holding them accountable will only work in your favor. That is my "teal warrior" mentality anyway.

Don't let this knock you down for too long, pick yourself up and go fight warrior woman!!

Hugs,
kathleen

Total shock
Dear Kathleen and Nancy, thankyou both for your replies.I guess I am learning how I should not take things on trust. I have not seen my gyn onc since I was in the hospital after my surgery only see his ARNP, she is very nice always listens to any concerns I have, as for my oncologist I think I have lost faith in him,he did not even know that Pet scans were now covered by medicare, thats why I had a Cat scan in April, I will call the office this morning see if I can get some answers. Love to you both Oska.

kayandok

oska said:

Total shock
Dear Kathleen and Nancy, thankyou both for your replies.I guess I am learning how I should not take things on trust. I have not seen my gyn onc since I was in the hospital after my surgery only see his ARNP, she is very nice always listens to any concerns I have, as for my oncologist I think I have lost faith in him,he did not even know that Pet scans were now covered by medicare, thats why I had a Cat scan in April, I will call the office this morning see if I can get some answers. Love to you both Oska.

I erased my post
and wrote a new one, but now I see that it did not appear. I did not read your original post correctly, and I apologize that some of my comments seem inappropriate.

There is no reason to assume what is there is cancer. It could be something else. You may actually still be NED, so don't panic! I do think that I would get a second opinion though, if you are uncomfortable with the team you have.

I had a really good second post, but can't remember it all now, LOL.

Praying for you tonight, Oska,
Keep us posted,
kathleen:)

oska

kayandok said:

I erased my post
and wrote a new one, but now I see that it did not appear. I did not read your original post correctly, and I apologize that some of my comments seem inappropriate.

There is no reason to assume what is there is cancer. It could be something else. You may actually still be NED, so don't panic! I do think that I would get a second opinion though, if you are uncomfortable with the team you have.

I had a really good second post, but can't remember it all now, LOL.

Praying for you tonight, Oska,
Keep us posted,
kathleen:)

Total shock
Kathleen your comments were very helpfull, I spoke to the oncolgists assistant and my Onc. Dr. is going to call me,I am going to demand I get the recomended tests. Thanks again Love Oska

oska

nancy591 said:

disappointing
Disappointing, yes. The end of the world, no! We all have to hold on to hope. I'd too would be pretty ticked about the lack of communication. But, to late to for that now. I would have my gyn/onc do all my future monitoring.

I'm not sure what the kidney cyst could be. 3mm lesion in the liver is VERY small. Before you jump to panic mode, have a follow up done. Like Kathleen mentioned, a new cocktail can knock it right out IF it turns out to be cancer. See what your gyn onc recommends for follow up. Stick to one location to monitor you from now on.

Keep hope, Oska. Let us know what happens.

XOXOXOXO

Total shock
I got to talk to my onc Dr. very late this afernoon he told me there is nothing to worry about. When I told him how upset I was he even suggested I get a second opion. I told him I just wanted an MRI he said it is only a cyst,I repeated I wanted an MRI, so next Tuesday I go for an MRI. Beleive me I have never been a pushy person, and I was very polite when I spoke with him. I have reread Linda's post from the 23rd June it is so inspiring. Love to you all Oska