high-grade serous carcinoma - likely uterus - experiences, thoughts, hope?

AnneC

Hi, first time here. Got results from biopsy of a mammoth lymph node (inguinal) today--I have this type of carcinoma. CT scan received Sunday said I had what looked like a neoplasm that had invaded my uterus. Waiting to get a uterine biopsy, but I am hoping they cut straight to a radical hysterectomy, as the scan reconfirmed that I had other nodes in my groin AND a node in my pelvic wall that was enlarged.

I am terrified. I am 65, still working, with OK insurance but am looking at at least an FMLA leave if not quitting entirely and having to figure out Medicare for this. Would like to move from Philly area to Pittsburgh, where my closest relative lives, so I can get support in whatever time I have left. Due to talk to a gyn/onc at a big Phila-area practice, the most senior person I could find on short notice--Monday morning. I feel based on what I have read that this is pretty advanced and hopeless.

Anyone here with a similar experience? And what did you have done?

If the cancer is in the nodes outside the pelvis, do they still do a hysterectomy? I feel so bloated and my back hurts. While the CT said bladder and bowel looked normal, my "stream" is not super strong--I can still pee, though. I worry every day is critical, and dealing with med businesses that rely on interns will kill me quicker than the cancer.

Thanks for anything you can offer!

NoTimeForCancer

AnneC, please try to take a breath. That you have an appointment scheduled with a gyn onc so fast is the right step. They won't be able to fully diagnose what you have until you have a hysterectomy but it is important that a genetic assay is done on whatever it is they find.

Both Philly and Pittsburgh have outstanding medical facilities, but you are starting in Philly. Is it possible for your relative to come to you? You would need the most help once surgery is scheduled and they 'know you' best. (good or bad, right?) do you have some support from friends or someone you trust in Philly? That might be helpful.

I had no family when I was diagnosed, a few good friends, but when it cam to surgery my sister came out. FMLA came in to play and I didn't need to use it all due to robotic surgery has a faster recovery. Some treatment required the usse of FMLA due to chemo infusion, but that is not on your horizon. This is a step by step process, so get in, see what you need to do and then find out what your treatment is.

Please be weary of Dr Google. The information out there tends to be old and as many of us have learned from other warriors, you are a statistic of one!!!

Take a breath. Find someone you trust to be with you. I'm sure some of the other lovely warriors will be along with their thoughts as well.

AnneC

Thanks so much, NoTimeforCancer. Lots of stuff to ponder....

Good advice (and a bit of hope) from someone I can trust, based on your experience. Not sure if family could come to me--I think maybe they could come in shifts--two are retired and in Northern NJ, the one in Pittsburgh, but not sure anyone could stand taking care of a sick person full time. They struggled caring for my mom post-stroke about 10 years ago.

My brother in Pittsburgh is on the cusp of helping me rent an apartment (at an amazingly below-market rate) across the street from him, which would be ideal, but I have to do (presumably) surgery first, probably here. I could pay rent in both places (here and there) for a bit. Need to talk to the gyn/onc to see what he says about all of this.

My boss (for my work-from-home job--if I can work as I get into this, at some point) recommended I take FLMA to give me some breathing room, so I may do that, if I want to keep working. Part of me just wants to retire and rely on Medicare, but that is scary.

In terms of overall approach--a retired gyn down the street, who has been kind, but also recommended I get family involved, to help with appointments, and also said it has to be a step-by-step approach.

While I try to read critically and be wary of sites called "Here's to your Health" and rely on more technical sites that are recent, I do think I have been over-Googling. I was just looking for hope--anything that might tell me that the snippets of info I've been provided by FP doctors who are not explaining anything were not bad news.

I hate to admit, but I ignored the node (about the size of a large egg) for several weeks--in part due to the arrogance of a resident FP doc, who initially dismissed it as an inguinal hernia (implying I was a hypochondriac because I mentioned my sister's early stage ovarian cancer, which she had survived), and then (checking with her boss) seriously returned to the room and said I needed to get an ultrasound ASAP, but without saying why. Delay in initial scheduling, expecting a call back that never happened. A day later, my longtime my cat started 12 days of dying from a rapid complex of cancers--so I totally ignored the US order, not really feeling anything was amiss--had that 6/20. So I have myself to blame, in a way. That said, the pre-auth on the CT scan and a 2-week delay on the biopsy didn't help. I am lucky this guy is seeing me Monday.

Again, thanks for the insights!

Mercorby

https://csn.cancer.org/discussion/326770/high-grade-serous-carcinoma-likely-uterus-experiences-thoughts-hope

Hi Anne,

Some information, but not enough. Not a good time to Google. Hard to wait for the real info from the doctor, but it is better for you to do that. This is a time to breathe and do something you like. Once you really know what's going on and what the treatment is, then come back here and we can get you to the info you need. FMLA is a good idea - when you know what your treatment plan is. I was teaching elementary school when I was first diagnosed until I retired. FMLA allowed me to go to appointments even if it was during the school day. I like the idea of working at home and living near family.

I was diagnosed in April 2015 and had two recurrences. I have been on a maintenance medication regimen and am in remission for over 5 and a half years. I am 65, lead a full life, and swim 3 to 5 times a week. I know it's scary, but there is hope. There are many treatments continuing to be available and there are very precise ways to identify your particular cancer and appropriate treatment.

Best wishes,

Corby

AnneC

Thank you so much, Corby. I hope I can keep a good attitude. It is good to hear you are in a long remission, too. Just trying to wrap my head around all of it. When I can sleep is when I am happiest, as being awake is hard. 630 here on the E Coast and I got about 5 hours sleep last night. Trying to sleep a bit more still today so I can digest some of the job/financial decisions I may need to make very soon.

I have always worried about having enough money at the end of my career, and the financial burden of an expensive illness is scaring me. If there is a way I could PM you to see how you are handling it, could you let me know? I have questions about Medicare, for example.

Finally, I find myself very aware of aches and pains and other concerns, and wonder how much is the cancer on the move and how much is my imagination. Lower back hurts, legs hurt. Since late April I have had occasional periods of vision problems--my two eyes can't focus. I can close one and am OK, then another and am OK, but not both. I chalked it up to changing BP meds in late April (amlodipine/Norvasc), but I'd never had problems with that when I tried it 6 years ago. Just switched to another one, tried earlier this year, and am having the same problem, but to a lesser degree. I will talk to my doctor about this--may be nothing more than it's beastly hot here on the E Coast, but it doesn't help as I key into any body changes.

Thanks for listening!

NoTimeForCancer

AnneC, everything you are describing is perfectly normal. I remember telling a friend the day I was diagnosed, and who had already been through a cancer and multiple health issues herself, how I couldn't wrap my head around it all and she wisely told me, "you won't today so don't try".

That retired gyn gave you good information as well, this is a step-by-step process. I would add to that, if you are having problems sleeping ask if there is something to help you during this time. You still want to be taking care of yourself here, rest and eating are part of that. I know, easier said than done.

dkbbjn

https://csn.cancer.org/discussion/comment/1707128#Comment_1707128

Corby, I am new. I had an endometrial serous carcinoma stage 1 diagnosis in 10/21. I had complete hysterectomy, chemotherapy, and brachytherapy in 2022. This year it returned in the retroperitoneal lymph nodes and my last day of radiation is today. So, I am looking for hope. Is this the same cancer you had and you've survived 5+ years and still going?

Mercorby

https://csn.cancer.org/discussion/comment/1708994#Comment_1708994

Hi,

First, do not give up on hope. My oncologist calls my cancer well-managed because they are constantly monitoring and treating it as needed.

Funny, you should ask at this time. My cancer just returned - a third recurrence, this time in the vaginal cuff. It's early, so they are going to do brachytherapy on that specific spot. In fact, it's so early that my radiologist calls it a "cute little tumor'! A lung nodule that I've had for a long time is showing some uptake on the PET scan, so they will biopsy. No one is very sure that is even cancer. If it is, they will probably zap that with radiation, if it isn't, I want it out anyway. The biopsies will determine whether I stay on the same treatment plan: Ibrance and anastrozole or something else.

My cancer is ER+ PR+ HER2-. It is a grade 3 adenocarcinoma with a high risk of recurrence. So, not exactly the same as yours, but there is hope. The trick is constant monitoring. I get regular PET/CT scans every 6 months (although they may move it to every 3 months for a while), and I see the gyn onc every 4 to 6 months, and my hemo onc every month (I have to have blood tests monthly while I am on Ibrance). The other thing is I know the genomic makeup and the mutations in my cancer. This allows me to stay up on current research specifically about these mutations. The other places to look at research are Metastatic Breast Cancer and Ovarian Cancer because a lot of money is put into research in those areas. There may be some of it that could apply to your mutations. This will help you in your self-advocacy with your doctors.

A good site for patients to get current information and webinars is sharecancersupport.org/uterine cancer. We have support groups and a helpline staffed with trained patients with uterine cancer in various stages.

By the way, I do not identify as a survivor, a thriver, a brave cancer patient, or any other cancer label. I identify as a grandma, wife, mother, friend, cousin, swimmer, artistic swimmer, merwoman, and an advocate for equal access to cancer care and an advocate for equal access to swim lessons. I do, however, own my cancer and do my best to understand the treatments that will maintain my life as outlined above.

I hope this helps you.

Warmly,

Corby