Reccurrence?..Waiting on biopsy results

I am still waiting for surgery to be scheduled! It’s been 11 days since my visit to the surgical oncologist office. Yesterday morning I spoke with the surgery scheduler who told me I would know the surgery date by end of day. I never heard back so sent a message via my patient portal to the PA practically begging to find out what’s going on. I have always been my own best advocate but this has me beyond frustrated. This is a large hospital, Shands, in north Florida.
The hardest part, other than waiting for a surgery date, is the not knowing where this cancer originated… the breast, the liver or a lymphoma so I don’t even know where to focus reading on treatment types.
It has been 5 months since all this started down the path of finding out an answer with tests, biopsies, etc. Has anyone else had it take so long to get a definitive answer? I almost wish I had not gone to the ER for a stomach bug back in April which is how all this started. I am so tired of this uncertainty.
Thanks for any impute.

The most frustrating thing right now for me is waiting for answers and I hear this from others A LOT! It’s the whole system seems to be slowing to a snails pace. In past years when my husbands myeloma came back, they had the chemo ordered and we were starting to get things done in less than a month. This time it took more than two months just to get the appointment to fill out paperwork for it. Last time the doctor brought it in to the appointment and filled it out in two minutes. Then another month to get the drugs actually on their way to us.
I applaud you continuing to to call and request information. One of our other (translate better) mentors mentioned this and said she is finding that asking the question in your portal will sometimes yield results. I might also frame this as a question of “do we know the origin of this cancer yet?” If not, what is the plan to get that answer?
Are you finding ways to enjoy life today while you wait? Distractions?

Any update, @meme5? How are you doing?

Thank you for asking. Yesterday after a week of constant phone calls from me I finally received a surgery date of Tuesday, October 11th in the afternoon for laparoscopic biopsy to determine the origin of the malignancy in the lymph node in liver area. I will be kept overnite and home on Wed. Then I also received a call yesterday from pre surgery that I had to go to Jax by 2:00 to have blood work,ekg, and chest X-ray so I drove the 90 minutes by myself to get that done. My blood work was all within normal limits, including the liver panel, go figure! The only low one was 18.2 for lymphphocites. Not sure what that means. But ekg and chest X-ray were normal. After surgery they will know where the malignancy in the liver lymph node is originating from.. the original breast cancer, lymphoma or liver( which seems doubtful).
This back and forth with this surgeons office has created so much anxiety and I just want answers. A nurse yesterday told me what a wonderful surgeon this is and that people come from all over the country to see him, although he marches to his own drum beat for communication. Obviously! I am trying to spend the weekend preparing mentally, physically and emotionally and dropping my frustration with how this all took so long. Many thanks for your concerns.

Dropping the frustration Is a wonderful intention as it will not serve you in any positive way. I Will be thinking of you and hoping for the best outcome . 🌸

Thinking of you today @meme5 as you recover from surgery.

The surgery went well. They removed the lymph node plus another lymph node and three spots on my liver. Now I wait for the pathology report which will take 5 to six days.
The surgical people were wonderful and I went home the same day as the Dr thought I would heal better at home rather than staying in the hospital. I am still on meds but walking around trying to get my energy back. I am grateful to finally get this surgery over and move on to treatment.

I just received my path report
In porta hepatic lymph node: Positive for metastatic carcinoma with aprocrine features
Tumor cells are positive for GATA3 and CK7 and negative for PAX8, GCDFP and mammoglobin. Although breast origin is favored, GATA3 is not specific for breast primary.
Liver wedge is benign hepatic parenchyma with no metastatic carcinoma
I am not surprised at these results but don’t understand the GATA3, CK7, etc or what it means for outcomes or what treatment I will need.
Any ideas?

I had a PET scan yesterday and the results were good overall. No bone or lung Mets. Some uptake in the portahypatic area where diagnosis for metastisis was made. But the uptake in July was 7.2 and is now 4.3. There are still other smaller lymph nodes with activity but the findings state overall favorable response to Letrozole therapy. I have only been on letrozole for three weeks.

The beginning of the pet scan report states “ expected activity in the partially imaged inferior brain, extraocular muscles, pharyngeal mucosa, heart, liver, spleen urinary collecting tract and bowel”.
This statement threw me for a loop but I took it to mean the dye may have lit up but this seems to be my entire body. It does not further state any concerns with the heart, spleen, urinary tract or bowel, bones or lungs.
So my questions are:
1 What does expected activity mean?

2. Since my uptake in the metastatic area of portahypatic decreased would that mean that my oncologist might just have me on the letrozole and not require Ibrance, etc for awhile or until the uptake increased with future scans? I don’t want to go on other drugs until necessary.

Overall I am relieved but know this is a lifelong journey and things can change. For now I am grateful!

Thanks for your impute.

Of the three CK4/6 drugs which are Kisquali, Ibrance and Verzinio is there one that is the most effective when used with letrozole? Also is there one that has fewer side effects than the others.
I am anticipating that my oncologist will put me on one of these and trying to gather info to discuss my options.
Thanks for any impute.