Pet/ct Scan

[Mary Jo]

How many of you had PET/CT scans right after your initial diagnosis? I thought that was standard procedure but now see that is not the case. I've met women who never had a scan. Why would this be? How can you give an accurate staging without a scan? For those who never had a scan and have had a recurrence, how can you say it was a recurrence without knowing if there were mets to begin with.

I had a PET scan, chest x-ray, both breasts MRI and blood work before any surgery was done. Staging wasn't finalized until all these factors were submitted.

Anyway, I'd appreciate knowing if there are any on this board who were diagnosed and never had a PET or CT scan before surgery or treatment began?

Mary Jo

[Chelee]

For me I was DX in Dec. 05 & went straight to surgery on 1-3-06 for a MRM. It was after my surgery I had my *first* PET/CT scan which was on 1-25-06. I have heard from a few that did not have a scan either and wondered why it wasn't done? It seems that would be important to over all DX. My Mother was recently DX with lung cancer and they did a PET/CT scan asap.

Chelee

[Mary Jo]

Chelee,

Can't figure out what an MRM is. I'm sure when you tell me I'll know BUT for the life of me, can't figure it out.

Thanks,

Mary Jo

[Bev]

Hi MaryJo.

No PET or CT. Did Breast MRI, CX and blood work before surgery. I would guess these tests would at least show that additional breast, lung and liver problems are unlikely. I think different oncs have different preferences. I would guess that the CT/PET early on may find problems in a very small percentage of patients. It may also show false positives. For now. I'm OK doing without these scans. If it comes back, I'll change my opinion. BB

[Chelee]

marejo, Sorry about that...MRM stands for Modified Radical Mastectomy.

Chelee

[tousled1]

When I was initially diagnosed via mammogram/sonogram I was sent for needle guided biopsy, MRI of the left breast which showed a 8mm area and large amount of microcalcifications, tumor marker test, a bone scan, MRI of the brain, and a PET/CT scan. After all the tests and surgery is when I was finally staged. I think each oncologist has different ideas about what tests they want done and when.

[Sherryg683]

I had surgery on December 22, to get the lump out. The PET/CT's were done around Jan 1, to look for mets and for final staging. I get them every 3 months now..sherryg683

[Mary Jo]

Chelee................Hahaha! I KNEW what's you told me what MRM was I'd kick myself. I'm kicking myself right now. LOL! Thanks for the explanation.

Mary Jo

[Chelee]

marejo, I KNEW you would know what it was the minute you read that post. LOL Its takes a while to get all these abbreviations. (But now...PLEASE quit kicking yourself...its just not worth it.) haha
Chelee

[Heart Sutra]

Sue was dx'd via a 6 month mammogram that was ordered because of a funny(!) looking cyst on her left breast. That was gone, but a 1.7 cm tumor was evident in her right breast.

went to a surgeon the next day. Ultrasound scan next day. core needle biopsy three days later. pathology showed histologic grade III/III er-. pr-, HER2 3+ Infiltrating ductal carcinoma. MRM surgery scheduled for 2 weeks later.

BLATANT MISTAKE (and lack of ability to inform us about it) by surgeon's office staff caused another 2 week delay as we needed to find a new surgeon 2 days before original surgery date.

She has not had pet or ct scans, and we have yet to meet with an oncologist.

Surgery went really well with good news on Tuesday (2 great new surgeons), sheduled to see docs on Friday, and will have a "consult" with oncologist, surgeon, and plastic surgeon sometime next week.
We, too, have seen that there seems to be no one path to recovery, we try not to second guess our path and try to be as informed as possible, easy to say not always easy to do.

---Kevin and Sue---

[tousled1]

Kevin & Sue,

Glad the surgery went well. But I think it's unfortunate that you didn't have a consult with an oncologist and plastic surgeon before the surgery. Sometimes women opt for immediate reconstruction and that is why the consult with the plastic surgeon and oncologist before any surgery. But all that said, you are now on the right path. Hope all goes well with your consults. Keep us posted.

[Heart Sutra]

Hi Kate,

You've been a great help.

We saw a plastic surgeon and primary surgeon before-hand, just not an oncologist yet. The thinking was that no matter what else was said, the tumor had to go and A.S.A.P.
What made matters worse was the original surgeon's staff making a huge insurance mistake, which cost us more time. The psychological blow of that was significant to say the least, and we don't yet know at what physical cost their error came at. Imagine that it was all caused by the simple inability to admit a mistake? It is amazing how some ego's are so walled up that any cost to outsiders is acceptable. We'll examine our options regarding that soon enough.
It was a bit of a gamble as far as the reconstruction went. Hopefully for once we bet the right way :)
---kevin and Sue---

[tousled1]

Kevin & Sue,

I can only imagine what mental anguish you both had to endure due to an insurance mistake. It's enough of a blow just to hear the words "it's cancer." Just don't ever second guess your decision.

[atdec05]

Hi Mary Jo,

I went from diagnosis to surgery to treatment without any scans. I am stage 1. My herceptin ends Jan. 31, and then I will meet with my onc. and some scans will be scheduled at that point.

I was node-negative, so maybe that's why I didn't have further scans, though I ended up having a chest scan because I thought I was in alot of discomfort after my port was placed, so I had an X-ray and pet scan.

I have no idea what scans I will have post-treatment, so I'm starting to look into that.

- Anna