had my first appt

Posted by MommaCandy @mommacandy, Jan 27 8:19pm

well i gotta say, i'm a little overwhelmed.. i finally got an appt with UVA, was supposed to have been Jan 31...they called last Mon asking if I wanted to take the cancellation on Wed...ABSOLUTELY!!! so i went in on Wed, had initial consult, exam etc and boy did they move from there...which i guess is a good thing....
yesterday i had lab work done, a chest xray, CT scan with contrast AND a biopsy all in one day...i'm TOLD one of the samples from the biopsy will be going to Mayo...idk why....but hey i'm ok with that...
they have me scheduled for a "total abdominal hysterectomy, bilateral salpingo oopharectomy, omentectomy, tumor debulking, possible bowel resection/possible colostomy and all other indicated procedures" ...Thats taken straight off the consent form i signed...basically from what i understand they are emptying my pelvic cradle of anything to do with reproduction, a fatty tissue layer, any lymph nodes in the area and all spots of any kind of tumors...
depending upon what the biopsy shows i guess as to the KIND of ovarian cancer it will determine whether they prefer surgery first or chemo first. the two chemo drugs being looked at carboplatin and Paclitaxel or something like that.. anyways, they ran a CA-19 which came back at 7 and a CA-125 which came back at 1536
so just waiting on CT and biopsy results...
so has anyone has this detailed of a surgery (Dr called it a radical hysterectomy) and can give any tips? as it is, it may still be postponed but trying to prepare mentally...

Interested in more discussions like this? Go to the Gynecologic Cancers Support Group.

@mommacandy ,
I see why you’re overwhelmed. That’s a lot to have happen so quickly. It sure sounds like everything is really getting top priority and attention, which is great! I wish I had tips or some ideas to pass on, but I don’t. I bet you’ll get some though.

I’m just sending well wishes and positive thoughts for your recovery. I’ll look forward to reading about your progress, if you choose to post it. Take care and good luck with everything! 🧸🙏💐

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@mommacandy It's all moving forward quickly. Yes, it's overwhelming however the waiting is done. When I was diagnosed with endometrial cancer I got my results, had an appointment with the surgeon a few days later and within the week I had the hysterectomy. My mind could barely keep up with all of that but I was so thankful that I did not have to wait and worry about what would happen next.

I had a robotic laparoscopic radical hysterectomy. This was a vaginal hysterectomy performed with the aid of a laparoscope which is a thin, flexible tube containing a video camera. Tiny and very thin tubes were inserted through about 1 inch incisions in my abdomen near and around my belly button and then my uterus, ovaries, fallopian tubes and cervix were taken out in sections through the laparoscope tube and through the vagina. It's amazing that this can be done. I also had a sentinel node biopsy which means that a few lymph nodes were removed from both sides through the incisions and sent to pathology to see if the cancer had spread to the lymph nodes - fortunately the cancer was not found in the lymph nodes. After surgery the pathology report indicated that I had endometrioid adenocarcinoma Stage 1a with no evidence of cancer found in the lymph nodes.

Your surgery will be abdominal from what you wrote so I'm thinking there could be a slightly larger incision than I had and the incision (s) will be in your abdomen so that the surgeon can have more access to inside of you. In fact, that used to be the way all hysterectomies were performed until the laparoscope was invented. That kind of surgery takes longer to heal but my surgeon told me that the "inside healing" is the same. I didn't have any pain after my surgery which I still find amazing. I was fatigued for about a week after the surgery and I had restrictions on what I couldn't do. I wasn't supposed to drive my car for at least a week and I couldn't lift anything heavier than about 15 pounds - explained as the weight of full grocery bag.

I hope you will post with more questions that we can answer and will let us know what happens as you go forward with your surgical plans. What helps you to cope with the unknown? How do you soothe yourself?

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wishing you the best for your upcoming treatment. Sharing my experience. I had the chemo/surgery/chemo protocol with carboplatin and Paxcitel in 2022. I was full of fluid which is not uncommon for later stage ovarian cancer, so the first procedure was draining my ascites-filled abdomen (I forget what that procedure is called right now) and sending off to pathology with multiple ct scans prior to surgery. I was warned before surgery that the surgeon would not know what had to be removed until they opened me up (very similar to the warning you received about the possibilities of bowel resection as well as removal of all the reproductive organs and the omentum). I ended up with the full hysterectomy, bilateral salpingo oopharectomy, and they removed the visible tumor from my omentum and removed my appendix. I did not have to have a bowel resection. I found the uncertainty about what they were going to take out pretty stressful, balanced with the hope that the surgeon could remove as much as possible during the debulking procedure. I spent about a week in the hospital and left with the same instructions as @naturegirl5. While not the most fun I have had, they controlled the pain well and I made a slow but steady recovery. I was grateful that I even was able to have the surgery since that was not a guarantee. I am stage IIIB high grade serous and BRCA 1 positive. Assuming you will get the genetic testing too as part of your treatment to help with your treatment plan.

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because they believe i have multiple soft tissue nodules attached to the Colorado hepatic lobe of my liver that is the reason for the bigger incision i'm thinking......also there are "numerous small rounded nodules present throughout the mesentery with the largest being located posterior and inferior to the transverse colon measuring 2.2 cm x 1.7 cm" thats taken off the initial CT scan without contrast...waiting to hear results of the one with contrast...i'll update yall as i learn more...but yes genetic testing in in the plans simply because of my family history...i've not been staged yet as far as i know, i think they were waiting on the CT w/contrast and biopsy results..

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@mommacandy

because they believe i have multiple soft tissue nodules attached to the Colorado hepatic lobe of my liver that is the reason for the bigger incision i'm thinking......also there are "numerous small rounded nodules present throughout the mesentery with the largest being located posterior and inferior to the transverse colon measuring 2.2 cm x 1.7 cm" thats taken off the initial CT scan without contrast...waiting to hear results of the one with contrast...i'll update yall as i learn more...but yes genetic testing in in the plans simply because of my family history...i've not been staged yet as far as i know, i think they were waiting on the CT w/contrast and biopsy results..

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@mommacandy , What is your family history?

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@celia16

@mommacandy , What is your family history?

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@celia16 well first off i'm a 10 yr thyroid cancer survivor myself but
back in 1988 my mom and i think it was 4 (maybe 5, that was a long time ago) of her first cousins were all diagnosed with cancer within about a year of each other, and ended up being treated by same doctor's office under the overseeing of the doctors at UVA where i am going for my treatment. Ironically 4 of the 5 all ended up in the office one day for checkups and were just cutting up and carrying on like cousins do and the office staff noticed and asked if they knew each other...well of course they told them they were all first cousins and hadn't connected in a while...and thus triggered the genetic sampling of them before BRCA even became known about i think...but it turned out that my mom and 1 of the others were children of men, they had developed breast to bone...the ones of the girls developed reproductive cancers.. my maternal grandpa had lung cancer and my brother had both thyroid and testicular cancer before he passed (from a deep brain bleed) so that's a not so quickie version of my family history..

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@mommacandy

@celia16 well first off i'm a 10 yr thyroid cancer survivor myself but
back in 1988 my mom and i think it was 4 (maybe 5, that was a long time ago) of her first cousins were all diagnosed with cancer within about a year of each other, and ended up being treated by same doctor's office under the overseeing of the doctors at UVA where i am going for my treatment. Ironically 4 of the 5 all ended up in the office one day for checkups and were just cutting up and carrying on like cousins do and the office staff noticed and asked if they knew each other...well of course they told them they were all first cousins and hadn't connected in a while...and thus triggered the genetic sampling of them before BRCA even became known about i think...but it turned out that my mom and 1 of the others were children of men, they had developed breast to bone...the ones of the girls developed reproductive cancers.. my maternal grandpa had lung cancer and my brother had both thyroid and testicular cancer before he passed (from a deep brain bleed) so that's a not so quickie version of my family history..

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@mommacandy ,
I see. That was an incredible way to make that discovery. I have a couple of friends who have tested for BRCA.

I know it’s not the same, but autoimmune disorders run that way in my family. Grandfather had severe RA, as did most of his children and grandchildren, with sprinklings of Type I diabetes, Lupus, Psoriatic arthritis, hypothyroidism, etc.

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Sorry! I didn’t read all the comments. Just make sure you get your follow up appointments with a speculum always even in the years ahead. I had exactly the same robotic surgery as yourself.

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Soooo Dr called with reports etc...the cancer is too widespread to do surgery currently (stage 3) so chemo it is...not what i wanted to hear but so be it...i start that on the 14th...get port in on the 13th...i'll be doing Carboplatin and Paclitaxel..i've been told mouth sores are a common side effect...i'm HOPING i can avoid that...(i remember how badly they affected my mom) any suggestions on that? is there foods to avoid that might make that worse? (obviously i'm guessing citrus and tomato products but idk thats why i'm asking)
I'm planning on getting my hair cut short this weekend so hopefully it won't be quite so traumatic to wake up with gobs of short hair on the pillow as it would have been to wake up to gobs of waist length hair...they told me i will have lost all my hair likely within 2 weeks...how did yall deal with that???
Also i talked to a cousin of mine who's done a lot of genealogy and he told me that there actually 8 of them diagnosed within a 2 year span of each other running 87-89 and it was 4 in the office that morning the genetic connection was suspected and the 5th came in that afternoon.. which is why i couldn't remember specific numbers lol

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@mommacandy

Soooo Dr called with reports etc...the cancer is too widespread to do surgery currently (stage 3) so chemo it is...not what i wanted to hear but so be it...i start that on the 14th...get port in on the 13th...i'll be doing Carboplatin and Paclitaxel..i've been told mouth sores are a common side effect...i'm HOPING i can avoid that...(i remember how badly they affected my mom) any suggestions on that? is there foods to avoid that might make that worse? (obviously i'm guessing citrus and tomato products but idk thats why i'm asking)
I'm planning on getting my hair cut short this weekend so hopefully it won't be quite so traumatic to wake up with gobs of short hair on the pillow as it would have been to wake up to gobs of waist length hair...they told me i will have lost all my hair likely within 2 weeks...how did yall deal with that???
Also i talked to a cousin of mine who's done a lot of genealogy and he told me that there actually 8 of them diagnosed within a 2 year span of each other running 87-89 and it was 4 in the office that morning the genetic connection was suspected and the 5th came in that afternoon.. which is why i couldn't remember specific numbers lol

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@mommacandy ,
I just saw your post. I realize you didn’t want to hear it, but you sound really good. How long will you have chemo? I do hope you can avoid the mouth sores.

Will you be taking time off work? Will someone be able to help care for you?

When they made the comment about losing hair in 2 weeks…were they saying that about starting chemo or that your illness would cause hair loss?

The genetic info is incredible. It had me wondering if I should get it, though I already know that my dad’s side has huge autoimmune issues. I don’t recall any cancers but one and that was my great grandfather who died in late 80s.

I hope you can be feeling better soon. Do you know what to expect with the chemo?

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