New here I’m so scared

Hi, TinaZB

I’m so sorry you’re so scared. I ….and all of the women on these gynecological cancer boards… can empathize. It’s a very tough time…being told you have a problem…being referred to an ONC…and the waiting. I know that my prevailing emotion, aside from abject fear, was that I was the only person who seemed to possess any sense of urgency. The sad reality is that these providers deal with this every day and I think to protect you from overreacting and preserve their own sanity, they operate at a slow, but steady pace.

I agree with MCavelli, that you don’t want to get ahead of yourself. In your post, you initially referred to them as cysts, and then as growths. Cysts can be malignant, but are more often benign, and I think are usually fluid filled, and not necessarily solid tissue.

The CA125 CAN be a good tool, and someone should order that….a simple blood test…so that you have the information before your appointment. It is NOT a good indicator for everyone, including me, so don’t let that send you into a panic!

My only other idea is that you referred to seeing an oncologist. I would strongly recommend that you see a gynecological oncologist.

I normally hang out on the Uterine board where we are very active. I had Fallopian tube cancer, so I check in on this board, also.

Please let us know how you’re doing!

Hugs, A

That’s a good question, MCavelli! But I don’t know where all the OC people are!

I think my original post was on the Other Gynecological Cancers board…or this one, I don’t remember… A wonderful woman on the UB invited me to join them over there because they’re very active and she knew I might not get much help here. They welcomed me with open arms! And saying…Well, the Fallopian tubes are part of the uterus! I have received tremendous help, love, and support from the wonderful ladies who post there regularly! You would be welcomed, also!

Because I was diagnosed with Fallopian tube cancer, and it is so rare, there is no research about it specifically, and we get “thrown in” (my words!) with the ovarian ladies.

Again my words….no science behind this term….I refer to Fallopian tube and ovarian cancers as “out and about cancers,” as in free flowing in the pelvis, rather than contained within an organ. My analogy is that it’s like the difference between a horse freely grazing in a pasture, versus one contained within a barn. And since I was Stage II I had small bits of cancer outside my tube, and 4 little tumors embedded in ancient endometriosis tissue in my lower pelvis…along with a positive peritoneal wash. The little tumors meant my diagnosis included, “secondary peritoneal cancer (pelvis only).”

So, to your second question…..I would say…in my non-medical opinion! that these are the similarities between ovarian and uterine cancers…1) Both undergo similar staging surgeries, which includes lymph nodes removed, and at least part of the omentum, 2) They both can be one or more of 3- 4 different kinds of these GYN cancers…endometriod adenocarcinoma, serous, and clear cell.. & 3) I think for the most part are treated with the same chemo drugs.. Most of us on the UB received a combination of paxlitaxel and carboplatin. Stage III and IV also have radiation.

I can’t really speak to the prognosis question. Again…I am not a medical professional or an expert…..but have gained information from my research…..Ovarian prognosis rates are the worst of all GYN cancers because 1) they aren’t symptomatic until much later and then they are more likely to already be Stage III or IV, and 2) I think like 85% are of the serous type, which is more aggressive. A common phrase on the UB is: “You are a statistic of one!” So, no one should feel distressed or defeated by statistics regarding survival.

Sorry this was so long! I just know that a cancer diagnosis is excruciating and we all need all the help and information we can get!

Warmest regards,

❤️, A

I get it. The not looking. Completely. I’ll cross my fingers for you.

Hi, Ladies

I know it’s so hard, but try not to worry too much until you are sure you have something, TinaZB. I got bloodwork done yesterday and as usual, dreaded that stupid CA125 result. But I got great news today! It was 18! My history with that number…to demonstrate it’s not being a good indicator…

Before 1st surgery: 20 (I was Stage II, but we didn’t know it yet)

After 2nd surgery/debulking: 66 (What??? I was so upset! Probably caused by inflammation from trauma to my insides from the surgery.)

During chemo: 20’s, then once it was 32 (I hated that! I suffered stomach lining damage and inflammation from chemo & that may have raised it.)), and never got below the 20’s.

Post-chemo, and while taking Zejula: 17, 18, 19, 21, and now 18.

GO says we look for steady or for trends. So far, so good.

Yes, checking out the UB would probably be helpful for both of you ladies! There are lots of threads where we’ve discussed everything related to this cancer mess! Surgery, CA125 results, chemotherapy…it’s all there! And there are many women with a serous diagnosis. And lots of hope!

Hope is there with the many women who don’t post too often, but pop up and check-in occasionally to help and give us news! Often times, good news! There are many who are many years away from treatment and are still doing well. We celebrate NED’s! There is great sadness among us when we lose a friend, but we are supportive and care for each other immensely. But mostly there are great stories of survival!

Hugs & prayers, A

Thanks, TBG.

My CA125 first registered in 400’s. Just before first chemo, it was mid-600’s. After four chemo cycles (last week), it was down to 14. And I have yet to go to surgery.

A friend of a friend started above 1000! And then came down. She has had many, many good years - around 12, I think - not without blips, but good, livable years all the same .

I believe the markers (when change is greater than 5 points) are best at indicating the direction you’re headed in more than any absolute or accurate quantity of pathology.

That hope continues to dwell amidst all the terrifying uncertainty is everything! Thanks for reminding me of that.

Welcome, TBullwinkle!

Yes, waiting was my first big problem! Surgery 1…wait 7 weeks…Surgery 2…wait another 7 weeks for final pathology. First appointment with GYN: July 27th. First chemo infusion: November 11th. ! Finally…one morning I got my port and had my “Chemo Teach” that afternoon. My fabulous chemo nurse….I didn’t know yet how fabulous she was!!….said, “We‘ll get your insurance approved and get you on the chemo schedule in a couple of weeks.” I practically exploded! I started crying and said, “This office has known since August 31st that I needed chemo & y’all have called my insurance yet??? I have been fighting like a dog for over THREE months to get treatment!I have cried everyday in the past week begging people to help me! Crying here to get port appointment, crying at port guy’s office begging for a surgery day, crying this morning at the hospital cuz they almost refused to give me my port because I have new shingles blisters today! I have had shingles on a regular basis for over 20 years and if someone’s waiting for them to not be present to give me my port, I’m never getting it…I’m never getting chemo…And I’m gonna die! (I know that sounds overly dramatic, but it’s completely true! That’s what I told the port guy & it made him decide to proceed!) NO! Waiting another 2 weeks for chemo is NOT acceptable!!” She got me on the schedule immediately. That’s my Advocate For Yourself story!

Back to the CA125 numbers…Yes, MC, I’ve heard of lots of people in the 100’s! I’m so glad your number has decreased so dramatically! Back when I was researching it, I read about one woman whose number was over 100,000! I don’t even know how that’s possible!

Hope y’all can enjoy your weekend!

❤️, A

I lost a year getting diagnosed. Developed gastric distress and discomfort following a routine colonoscopy in late 2020. Put on Prilosec for six weeks. Did nothing. When I reported increased flatulence, told to just “let her rip,”. When finally referred to a GI, I had to wait 8 weeks because of pandemic backlog. Then began a slow process of ruling out celiac, lactose intolerance, IBS, and the like. Finding nothing, my GI put me on a low FODMAP diet for symptom relief, where I wasted another several months. When I developed abdominal pain and couldn’t get a quick enough response from my overbooked GI, I went to a PA at my primary clinic, who got me in for a CT that afternoon, 11-2-21. A year lost. I try not to dwell on the failure to even consider an OC diagnosis. Looking back, I see the risk—post-menopausal, no pregnancies, and years of HRT. My primary should have seen this, but she too was overbooked and, it turned out, had one foot out the door.

The pandemic surge in fall, 2021, made for more agonizing delays —needle biopsy, gyn Onc consultation, and a laparotomy that just missed being cancelled during the height of the surge in December only because I had to contest their ranking — asserting that metastatic OC was anything but low risk — they actually then moved my procedure up. Maybe when I have a clearer picture of where I stand, I can come back to fight for repairing these lethal breaks in our health care system . Presently, however, I need to conserve my energy to counter the harsh effects of treatment. I turned out to be one of the rare people who react to the cremaphor EL in paclitaxel. Put on a different form, so doing much better after chemo 5 . Strangely, the hair loss didn’t bother me that much I shaved my hair 2 weeks after chemo 1, and found a Scunci multi-function head wrap at Target that’s been my go-to head covering The bigger loss for me has been my eyebrows and lashes. That started between Cycles 4 and 5. My brows had been very dark and distinctive, and without them, my eyes seem to get lost in my face Eyebrow pencil/crayons help some, but don’t stay on TLC, an Am Cancer Soc affiliate, sells “halos” — a donut like fringe of hair that works nicely under scarves and hats. Affordable at around $40 for those of us whose insurance doesn’t cover wigs Hope that part might be helpful