Waiting for PET Scan and worried

DeeDee45 · August 2016

Hi, this is my first time posting. I was diagnosed with BC Jan 2014, had double mastectomy, cancer in right breast, left was strictly prophylactic. My cancer was grade 2 and I was staged at IIb with no lymph node involvement. My Oncotype score was in that gray area, I opted for chemo and was told I did not need radiation. All was well until my tumor marker was elevated in April of this year, wait 3 months and recheck. July recheck results were double what they were in April, so off for an MRI which showed several spots in my liver. MRI was followed up by liver biopsy last week and I was scheduled for a PET scan today, but the machine was down so now more waiting until Friday, hopefully the machine will be up and running by then. I will see my oncologist on Monday. I don't have any questions, just wanted to put this out there, keeping it in has been the hardest thing. I don't want to tell my grown sons until I know for sure what I'm facing, and I don't feel I can share with my friends what I'm going through until I tell my sons. I just cried this morning when I was told the machine was down, they had tried to call me, but I missed the call. My nerves are shot, and the waiting, waiting, waiting to know the answer is horrible.

Meow13 · August 2016

Deedee, I am so sorry. It is torture to try not to think the worse but afraid to think optimistically. When will you get the biopsy results? Praying for good news for you. There are several ladies on the board that have lesions on the liver and are doing well.

KBeee · August 2016

Sorry you are facing this. What did the liver biopsy show? Hoping the PET comes back clear. Keep us posted.

DeeDee45 · August 2016

Thank you Meow13, Hydranne, and KBeee. I appreciate your words of encouragement. The PET Scanner was still down today despite being under repair since Wednesday. Hopefully by next Wednesday it will be up and running again. I called my oncologist yesterday and requested a callback with my biopsy results, they called this afternoon, I do have mets in my liver. I'll meet with my oncologist on Monday to discuss the plan of attack and then again if the PET scan shows more mets. I did not get a second opinion the first time around, but I think I need to that this time around.

dtad · August 2016

DeeDee...so sorry to hear about your recurrence. We are all here for you. IMO a second opinion is always a good idea. I also would encourage you to be seen at a university based teaching hospital if possible. Good luck to you.

justmetoo · August 2016

DeeDee45

Wishing you the best, praying for a great outcome. Prayers and thoughts are with you.

RI10 · August 2016

This is my first time posting also. Positive thoughts for you DeeDee. I wish the best results for you.

I have a question for anyone regarding what DeeDee said about the "tumor marker being elevated". I do not know what this refers to.

I was diagnosed with BC Jun2010, had a left mastectomy, three tumors in left breast the largest tumor was 5cm. My cancer was stage IIB and no lymph node involvement. I had chemo and did not need radiation. I had reconstruction in 2014 a left gel implant and right reduction. I finished the 5 year Arimidex January of this year.

My last 6 month check the oncologists felt a mass in the healthy right breast which was not there at the previous 6 month visit. Another in office oncologist was consulted. They both had concern, re reviewed my file and 3D mamogram. They told me nothing unususal was visible on the mammography so advised we should wait and see. My next appointment was moved from 6 months to 4 months if the mass remains or has changed an MRI will be scheduled. I was advised to be vigilant and report any changes in the breast or symptoms and we would move forward sooner.

I feel alarmed about the waiting. During my 2010 initial diagnosis only the smallest tumor was visible. The other larger tumors were found after the mastectomy.

Moderators · August 2016

RI10-

We want to welcome you to our community! We understand your concern about waiting, especially given your history with breast cancer. Did you discuss your concerns with your doctors? Is it possible they'd be willing to move ahead with the MRI, to definitively rule anything out and give you some peace of mind? Definitely worth a shot to ask!

Please keep us posted!

The Mods

DeeDee45 · September 2016

RI10, I don't think I could wait 4 months, I would insist on an ultrasound or MRI now.

DeeDee45 · September 2016

My PET scan was good and bad, no mets in lungs, bones or brain. The largest lesion in my liver lit up, but the smaller ones did not. That's the good news (I already knew the large lesion was a breast cancer met from the biopsy). The bad news is that I had a spot light up in the area of my right ovary. The feedback I got from my onc office via his PA was that he wasn't too worried about the ovary area, but I could have it checked further if I wanted. DUH, I'm done with the waiting and watching, I have an appointment to have the area checked by ultrasound by my gynecologist next week. Apparently if it is suspicious, I will be referred to a gynecology oncologist. You know I'm 62 years old and I don't need either ovary, so why can't they just take them out instead of waiting for them to become cancerous, if one hasn't already. I've asked to have them removed but since my cancer is considered age related, and not hereditary, they say there is no need to have them removed. I'm just ranting at this point. Thank you all for your concern, well wishes and advice, it's been good to put my thoughts into words here and know that I won't be condemmed.

KBeee · September 2016

DeeDee, It sounds like you have a good plan. I think I'd be wanting more info about the ovary too. Easy for them to say not to worry about it!

Rl10, You can call back and tell them you are not comfortable waiting 4 months. A lot of masses are not visible on mammogram, but are more visible on ultrasound or MRI. I have learned the hard way that we really need to be our own advocates, so push until you get the imaging. There is no valid reason for them to deny it.

Waiting for PET Scan and worried

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