New here I’m so scared

TinaZB

Today I went for a pelvic ultrasound and I got a call back that they see 3 suspicious cysts. Only symptoms I’ve had have been lower back pain. Sometimes left hip. That’s where they saw the growths. I’ve been referred to an oncologist. No appt yet they said it could be as late as next week! I’m terrified. At the same time just signed closing papers on our dream house was set to move all weekend. I don’t know how to function. All I can do is cry. Does anyone know what’s next for me? Any words of advice would be appreciated.

MCavelli

Waiting is absolutely the hardest part. No one knows what’s next. The uncertainty is unbearable. But all that worry, angst and tension do zero to help. .

I had to wait 2-1/2 weeks for my initial gyn Onc consultation. That was after a confirmatory needle biopsy.

your cysts are suspicious only. Can your primary run a CA 125 blood draw while you wait for the oncologist?

meantime, wait until you’re properly diagnosed and staged before panicking. You’re getting ahead of yourself in a way that bears little benefit.

And trust that if it is confirmed, you’ll find the tools you need as you move along. It somehow just works that way.

thatblondegirl

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

MCavelli

https://csn.cancer.org/discussion/comment/1695565#Comment_1695565

So that’s where everyone with OC is? How similar are the issues/prognoses?

thatblondegirl

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

TinaZB

Yes I might be getting ahead of myself. Maybe it’s my head trying to wrap my head around the potential outcome and figuring out ways I might deal with it and along with that comes panic.

I do have complex cysts and not all cysts are fluid filled. Mine have solid components and vascularity within. And this is what is scaring me. I have met with a gynecologist oncologist and I have surgery scheduled in 3 weeks to remove both ovaries and to biopsy at that time. I have had the CA-125 drawn. It is waiting for me in my email but I’m too afraid to open it. As I’ve been told (even by the Dr) not a reliable indicator so I’m sparing myself the extra worry.

thank you for taking the time to comment. I appreciate it.

MCavelli

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

MCavelli

Thank you, BlondGirl. IIIC serous, Fallopian tubes here. Finishing chemo before debulking surgery. Just had cycle 5. Was reactive to the paclitaxel, so recently switched to the protein bound form, w/ carboplatin. Starting to dread surgery —- omentectomy for sure; possible bowel resection, and who knows what involvement there is with my bladder. Taking my own advice, I’ll try not to get too far ahead of myself. Post chemo scans will shed some light in another five weeks. I’ll check out the uterine board. Thanks.

thatblondegirl

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

ConnieSW

Hi, Tina. I’m from the uterine board also. The ovarian group used to be very active and quite a few of us moved between the two. I did because my my tumor type acts and is treated more like ovarian. At any rate, I’m nearly 10 years post treatment and still here. Try to keep your chin up while you wait to learn more. Easier said than done, I know.

MCavelli

https://csn.cancer.org/discussion/comment/1695583#Comment_1695583

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.

TBullwinkle

https://csn.cancer.org/discussion/324950/new-here-i-m-so-scared

Hi Tina! I am also new to this group. I understand being scared. The waiting is the hardest part. Remember, you are your best advocate! I pushed very hard on getting all my tests/doctor's appointments done by checking every day for appointment cancellations by other patients. It was a short three weeks from diagnosis to being on the operating table. My best advice is to limit your time on the web. I was so desperate for information I constantly surfed the web. There are a lot of misleading statistics out there. The American Cancer Society website was the best I found. Take a deep breath. Keep posting/reading this website. It is so helpful to talk about your fears with people who have gone through your same situation.

thatblondegirl

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

TBullwinkle

I am so sorry to hear about your difficulty getting your treatment started! I spent a lot of time on the internet researching ovarian cancer. The internet can be a very dark place, but it gave me some background on the problems with ovarian cancer care. There does not seem to be a set standard of care. Time is of the essence in cancer care. It is tragic we must push so hard to get the care we deserve. A lot of the problem is poor information on ovarian cancer. I think some people/doctors who are uninformed think the CA 125 test is gospel. I met with one of the doctors responsible for creating this test. He told me it is a good test, but can also give false positives and false negatives so it needs to be considered with care. It is a monitoring tool, not a diagnostic tool. Too many doctors/people confuse these two uses. The CA 125 did not work for me. My reading was <5, but I had a malignant tumor on my ovary. Going forward, I will not be using the CA 125. My doctors will use a CT Scan to check on my progress.

TinaZ - hang in there girl! It is good you are seeing an oncologist. If it is cancer, they can remove everything and do biopsies all in one operation. Too often, a regular OB/GYN does the initial surgery and takes out the affected ovary. The ovary is then sent to pathology. By the time the pathology report comes back stating it is cancer, your surgery is over. Therefore, a second surgery needs to be performed to remove anything else which may be affected and to biopsy areas of your pelvis. One surgery speeds up your diagnosis and treatment. We are all in your corner! Keep writing to us! I know you are going crazy with worry. I've been there!

Anyone have tips on how to handle the chemo? I have not started it yet so I don't know how I will be affected by it. I've already bought a few new scarves for the hair loss! I'm trying to look at the positive - I wanted to grow my hair out and stop coloring it. This will be my chance! Tip for the hair loss - have your doctor give a prescription for a wig. Many insurance companies will cover some, if not all, of the cost if you have a prescription.

MCavelli

https://csn.cancer.org/discussion/comment/1695620#Comment_1695620

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