The Importance of FES PET Scans for ILC Patients

Correction: lymph nodes involvement detected by MRI but not ultrasound.

I have the same cancer in right breast and MRI showed suspicious lymph nodes in left armpit. They did a biopsy and it came back negative. I meet with the surgeon next week.

Was told that ILC does not show up on Pet Scans… is Fes Pet a new type of Pet Scan? Did you require a contrast dye with your MRI?

Hi Suzy - the FES PET CT is a relatively new technique that detects estrogen positive cancer and especially in cases of metastases, which was my situation. The other techniques did not detect it. And yes the MRI was with contrast dye. Please talk to your doctor about having it done.

Karen - hope everything is going well for you!

My MRI was done with contrast dye. Still waiting for call from oncologist surgeon at U.C. Davis for a consult because the local surgeon recommended a bilateral mastectomy and we don't have a plastic surgeon in town for reconstruction.

Karen… How does a bilateral masectomy differ from a masectomy?

Vivien… Did you require contrast dye with your Fes Pet CT? Sounds like a cat scan?

Suzy, they think I should remove both breasts since there is already atypia in the non cancerous side. Also because the lobular kind is sneaky as you said and often doesn't show up. In fact I had a normal 3D mammogram just 6 months before I discovered my lump. Then I won't have to worry about it coming back in my breasts. I going to talk to them about the FES PET since mine is Er/PR positive.

Vivien T… Mine is not metastases, not yet, there exists a possibility of becoming that way. Only reason they push masectomy is because they do not do oncoplasty surgery here instead of directing me to a specialist that does. Refuses to consault with a doctor from elsewhere even though he said that a larger facility has more access to different things than he does. He said he would not put me on a kasqali med afterwards because my cancer is not that bad. Why then refuse to work with me toward a facility that specializes in oncoplasty is beyond my comprehension. How is that good healthcare? I do not know where to go. Have health concerns he needs to address first & foremost before I even contemplate surgery such as I had strokes in the past twice from anesthesia. Does not care about that. Push surgery without checking into how their anesthesia department can accommodate me. Just hope it does not happen this time. I said to his nurse that I would rather die than have a major stroke. She remarked back that she does not blame me. These strokes occurred at 40 yrs of age, then 55 yrs of age. Did they give me too much? I am only 5 ft tall? Do they have a better anesthesia med now for those who are sensitive? He refuses to check with an anesthesiologist. Just before surgery you can speak with them. That does not set well with me. Also I am not a good candidate for silicone implants. My over reactive immune system will reject them. Need to know where there is a facility with caring doctors who will address these issues without traveling all the way to CA or Texas. Mayo Clinic is the closet big clinic, but they are not taking new cancer patients until after they have had surgery. Surgery is my issue.

Karen C… would consent to having both breast done if it is through an oncoplasty procedure per lumpectomy with breast reduction vs a masectomy. This way they can use your own tissue to rebuild & reshape the breast vs using silicone transplants which my body will reject. However first & foremost they must address my issue of anesthesia since I had strokes in the past from it. However he refuses to check with the anesthesiologist dept if there is another med now for sensitive people who have an issue either it. Instead he says just hope it does not happen again.

The doctors only issue with a straight lumpectomy is they need to take a bit more than usual, so my breast will be misshaped. That is what makes me a good candidate for oncoplasty. Since they do not do that at our hospital he pushes masectomy. The surgeon thinking out loud said that maybe the could just cut the nipple off & resew it on elsewhere. I do not want to be their first experiment. From what I know, the nipple should not be cut off it will die without a blood supply.

Suzy Q - I can completely understand your frustration. They definitely need to figure out the right anesthesia for you, and well before your surgery day. They typically meet with patients one week before surgery to go over your history and take vitals etc. You mentioned you’re close to Mayo Clinic (in Rochester MN?) They are a premier cancer center and I heard it helps to have a referral to get in sooner. Can your doc refer you to an oncologist there? Good Luck! Sending positive thoughts your way.

Vivien T… I can not have any contrast dye any longer. anaphylaxis from CT scan iodine dye. Severe adverse reactions this last MRI w/MultiHance contrast. The dye would not release from my system. That MRI showed no lymph node involvement. Did you have a dye with the Fes Pet CT? I can not get into Mayo? No new cancer patients until after surgery has been performed. Surgery is my issue because oncoplasty is not offered at our hospitals. Saw an allergist at Mayo concerning the dye issue because my oncologist said he never heard of such a thing & could offer no help. She, the allergist, said it definitely causes several adverse reactions. Lasted over 2 months before it would detox out of my system. By the time things get resolved I hope my cancer does not spread. Should not as long as my Letrozole keeps doing its job.

Suzy Q - so sorry to hear what you’re going through. I don’t know if there’s a dye - I saw the liquid was a greenish color, so it probably is - but it may have been a product of the synthesis of the radio labeled fluorine. I wish you well through this horrible journey.

Thank you for sharing this important information about FES PET scans and how they helped provide a more complete picture of your diagnosis. Your experience highlights how different imaging techniques can reveal different details, which can be valuable information for others navigating similar situations. It's helpful when community members share their experiences with various diagnostic tools, as it can help others learn about options they might want to discuss with their medical teams. What aspects of working with your care team during this diagnostic process have been most helpful for you?