CervCa: Cancer diagnosis after hysterectomy

Hello all. Well I received the dreaded news no one wants to hear, they found cancer. I had a DaVinci total hysterectomy due to heavy bleeding and large clots, and what they assumed was a fibroid. Turns out it was a 5 cm tumor that had spread from my cervix. Pathology reports show squamous cell carcinoma and staged at IIB. I am still waiting to get into the gynecological oncologist my doc referred me to. I’m worried about it being staged beyond that, as no other tests have been performed to check for spread. Any one out there with a similar story or initial diagnosis on pathology report, then given a different one? The waiting has been the hardest part and it’s only been a few days. I just want to know exactly what I’m up against, have a plan, and get to work! I have way too much to live for and sitting here waiting, thinking that the cancer is just multiplying inside me is terrifying.

I'm very sorry you've received this news, (((jenhar6))). Hearing that you have cancer and having to wait for the next steps is excruciating, to be sure. As you've stated, you will feel "better" once you've met with the gynecological oncologist and get more information and a game plan. You likely will have additional scans and testing as well. For that appointment, write down any questions or concerns you might have and take someone else with you, if possible (another set of ears). Oh, and be sure to get copies of your path reports, scans, etc, so you'll have them for your own reference.

I know it must feel like the ground has been pulled from under your feet. But, please try not to let your mind race too far ahead of things and create even more anxiety going round and round with all the unknowns. Hope it helps at least somewhat knowing that you are not alone in all of this, and we'll be here to help however we can. Sending hugs and every good thought your way, (((sister))).

Thank you, I appreciate the kind words. Hoping this waiting time passes fast.

It's hard as you're limited by recovery constraints, but it helps if you can keep busy and your mind otherwise occupied, so it isn't going 24/7 on worry. Maybe even treat yourself to something(s) you enjoy.

VA hospital emergency room referred me to a civilian hospital for diagnosis of post-menopausal bleeding.

Gynecological surgeon at a civilian hospital that did my hysteroscopy diagnosed Endometrial Cancer, Grade 1, but no staging, and referred me to gynecological oncologist at the civilian hospital for hysterectomy.

VA primary care and gynecology clinics and fought over which clinic had to pay for my treatment, and refused, so treatment was delayed.. The VA Patient Advocate was useless, so treatment was further delayed, and I ended upgoing to the VA Hospital Director's office to get them to fix it. That office directed one of the clinics authorize, pay, and refer to the gynecological oncologist at the civilian hospital for treatment.

The awesome gynecological oncologist at a civilian hospital that did my daVinci hysterectomy with BSO and lympectomy said he thought he got it all and didn't think the cancer had spread, so Grade 1, Stage 1.

The civilian hospital pathology report found a met in my left ovary, so Grade 1, Stage 3.

So, I had pelvic radiation at a civilian hospital after I was healed enough from the surgery.

The civilian gynecological oncologist ordered a PET scan, which the VA performed. The VA found a hot spot and said I needed chemo. So, I had the initial consultation for a chemo port and an appointment for the surgery at the VA was made.

Went back to the gynecological oncologist at the civilian hospital and he said the hot spot wasn't cancer: it was inflammation from healing because that was one of 9 places he had removed a lymph node. He contacted the VA and no port and no chemo


I'm at another VA hospital in another state now, and we're fighting over being referred to a gynecological oncologist for continued follow-up, instead of the regular gynecologist at the VA.



May God bless you with quick healing and His perfect peace.

I have nothing to offer you but a huge hug and prayer and I WILL pray for you and for a break.

I truly appreciate the support. Trying to stay optimistic and keep my mind as occupied as I can.

Hoping to hear from doc tomorrow to get additional tests scheduled. Just want to know what I am up against. After reading my pathology report, I’m scared to death as it seems my doc just hacked up my uterus in order to get it out. How could he not see the giant tumor and cancer? All I can think about are the cancer cells just going crazy everywhere in my belly now. I just wanted some relief, now I am kicking myself for not asking more questions. Which will never happen again. Hard lesson to learn.

	Quote:
Originally Posted by jenhar6 Hello all. Well I received the dreaded news no one wants to hear, they found cancer. I had a DaVinci total hysterectomy due to heavy bleeding and large clots, and what they assumed was a fibroid. Turns out it was a 5 cm tumor that had spread from my cervix. Pathology reports show squamous cell carcinoma and staged at IIB. I am still waiting to get into the gynecological oncologist my doc referred me to. I’m worried about it being staged beyond that, as no other tests have been performed to check for spread. Any one out there with a similar story or initial diagnosis on pathology report, then given a different one? The waiting has been the hardest part and it’s only been a few days. I just want to know exactly what I’m up against, have a plan, and get to work! I have way too much to live for and sitting here waiting, thinking that the cancer is just multiplying inside me is terrifying.

I am not sure I am much help but I knew I had cancer going into it with quite a large tumor, I knew it was grade one which is good, the first Dr thought it might be further along but when the path came back it was only 33% through the lining. I had 27 lymph nodes removed along with everything else which turned up ok. I had no idea what the treatment plan would be as I turned out to be a stage 2. I had brachytherapy as a precaution. The doctor said it was still early in my case. My doctor said they had to take out my uterus thru a incision on my lower abdomen as I was too small in the other area I had no children. They talked about bagging it that freaked me out. I had the DaVinci was in the hospital one nite hardly even 24 hours. Seems like every case is very different. I had problems for years and don't trust doctors much but guess I lucked out with the oncologist. That was Feb of 2018. The reports will tell a lot. Hope all works out for you.

	Quote:
Originally Posted by jenhar6 I truly appreciate the support. Trying to stay optimistic and keep my mind as occupied as I can. Hoping to hear from doc tomorrow to get additional tests scheduled. Just want to know what I am up against. After reading my pathology report, I’m scared to death as it seems my doc just hacked up my uterus in order to get it out. How could he not see the giant tumor and cancer? All I can think about are the cancer cells just going crazy everywhere in my belly now. I just wanted some relief, now I am kicking myself for not asking more questions. Which will never happen again. Hard lesson to learn.

I am certain you are not the first person to whom this has happened so don't kick yourself. What you must focus on now is healing so you can go forward to whatever needs to be done next.

	Quote:
Originally Posted by jenhar6 Hello all. Well I received the dreaded news no one wants to hear, they found cancer. I had a DaVinci total hysterectomy due to heavy bleeding and large clots, and what they assumed was a fibroid. Turns out it was a 5 cm tumor that had spread from my cervix. Pathology reports show squamous cell carcinoma and staged at IIB. I am still waiting to get into the gynecological oncologist my doc referred me to. I’m worried about it being staged beyond that, as no other tests have been performed to check for spread. Any one out there with a similar story or initial diagnosis on pathology report, then given a different one? The waiting has been the hardest part and it’s only been a few days. I just want to know exactly what I’m up against, have a plan, and get to work! I have way too much to live for and sitting here waiting, thinking that the cancer is just multiplying inside me is terrifying.

jenhar6 - Wow Jen. I know waiting is hard and medical services are backlogged in a lot of places making your wait extra long.

I am intrigued by your story. They were concerned about cancer in mine too. But surgery was backlogged due to Covid and Operating Room backlog. I was thinking (from first use of the "C" and "H" word until surgery January - June 16), what if it is cancer and here I am waiting 6 months!!! So I relied on prayer partners.

Mine was a 7cm fibroid. They took everything. I got the call 2 wks later it was benign. But I have to say hearing your story makes me realize I was fortunate. Thank you for sharing. Wishing you all the best.