Anyone here diagnosed with aother primary?

jojo68

I am making an appointment as I am concerned. I know I have one ovarian cyst (have had for 10 years) and fibroids.

I am a 6 year ILC survivor with mets to my bone marrow. Lately, I am having cramping that feel like menstrual cramps. I also have an early satiety and constipation. I am beginning to get concerned I may have ovarian cancer as well since some of these are also symptoms. BUT, these are also symptoms of cysts....any experiences from others?

EV11

joj68-

Your symptoms may very likely be from the ovarian cyst (which they very likely could be), but ILC has a high predilection for metastasizing to the ovaries and peritoneum, and to surround and invade organs of the GI tract. Odds would be greater that you have ovarian ILC mets and NOT a new primary ovarian cancer. Also know that lobular mets to the peritoneum/GI tract can also cause a rise in CA 125, so if you decide to check that tumor marker it might not be very helpful in distinguishing primary ovarian cancer from ILC mets.

It can be very difficult to see ILC mets in the ovaries and peritoneum or GI tract; if extensive, they might appear as "thickening" or "stranding" or "caking" on CT. If you do decide to get a CT scan, I would have your oncologist write a note to the radiologist who will be reading your scan and alert him/her to the fact that you are trying to detect possible ILC mets (which usually don't from discrete tumors or masses) and for them to be very diligent inn looking for thickening or stranding.

I had ILC mets to ovaries, fallopian tubes and peritoneum, and none of it showed up on CT or MRI, even with the radiologist being very agreeable to look particularly for that. Those mets were only found during surgery when I had a BSO a few months after my de convo stage 4 diagnosis. I only had the ovaries removed because I was not having my ovarian function fully suppressed by goserelin injections. It was quite a shock to get the pathology report back!

A few months after I started systemic treatment my sense of abdominal fullness went away, and things have been quiet and comfortable since then....which correlates with my up-til-now great response from my treatment. (I now have 2 new lung mets and an unusual genetic mutation to deal with). But that's a different story!

I hope that you can get some answers from careful imaging; perhaps it's time to try a different treatment or a liquid biopsy to see if there is anything new or informative lurking.

Good luck figuring it out. Lobular is a pain in the ass to deal with, especially with regards to imaging and detection. Let us now what you figure out.

Elizabeth

Seaway

Hi Jojo;

I have had ovarian cancer and my main symptom was the urgency to pee.....often. The symptoms are so subtle they are easy to ignore but I actually noticed this. I had a single wipe of blood one day (66 years of age) and immediately went to my md even then not really thinking of ovarian cancer. Because I had had breast cancer previously my doctor sent me for an abdominal ultrasound where ovarian tumour was found quite easily . Very early stage. I suspect the blood had nothing to do with the ovarian cancer and that the high frequency peeing was the tell.

Cathy