liver concerns

[Marieck]

I had clear cell ovarian cancer and had debulking surgery and hysterectomy a year ago. I recently had sudden right side and back pain and had a scan with blood work. Everything came out ok except my liver numbers (ast and alt) were super high. Could this indicate the start of a reoccurrence? Has anyone had this and later found OC spread?

[Doggies221]

hi there. Sorry to hear of your pain. How about the possibility that chemo or any other drug you may have taken has damaged the liver? A hepatitis virus could also be a culprit of liver damage. Just throwing ideas that don’t have to do with cancer. Best of luck!

[Marieck in reply to Doggies221]

Thank your for your reply. Yes I thought that too and totally agree I don’t want to just assume the worst. I didn’t have chemo and my hepatitis tests came back negative. The doctor is going to test the levels again in a week in case it was a virus. Hopefully they will go down.

[Doggies221 in reply to Marieck]

I hope the levels go down. I assume you were staged at 1A if you didn’t have chemo.

[Marieck in reply to Doggies221]

Yes your right I am 48years old and it was stage 1a.

[Doggies221 in reply to Marieck]

It’s good, if there’s anything good about a cancer finding, that this was in stage 1A. I think the liver tests will likely get better. Do you mind me asking how large the tumor was and if you did laparoscopy or laparatomy?

[Marieck in reply to Doggies221]

I don’t mind at all. It was 8 cm. The doctor wanted to do open surgery ( so I guess laparotomy)instead of keyhole because she felt she could be more effective with washing and staging that way.

[Doggies221 in reply to Marieck]

That sounds great. It’s good you came across a good surgeon. I suspect she did everything, including hysterectomy, in one procedure as opposed to 2 surgeries, as sometimes happens when doctors fail to diagnose early stage ovarian cancer pre-operatively. I’ve faith that the liver situation will resolve. How have you managed surgical menopause? I’ve found that to be a challenge of which I was not warned or prepared for, unfortunately.

[Marieck in reply to Doggies221]

Actually due to my age and personality I was a hard patient. I had two surgeries because until pathology confirmed cancer I refused to have the total hysterectomy. As much as they told me surgical menopause was no big deal nothing I read confirmed that. My first surgery removed the tumor and was keyhole. My second was full hysterectomy and i started to have hot flashes five weeks later. I am on hrt and it has helped but also could be the cause of the liver issue too. For 1a you have a choice to do chemo or not according to fda guidance it was recommended but my surgeon understood my choice. Thank you for the support I hope things are going well with your journey as well

[Doggies221 in reply to Marieck]

Thank you for sharing, Marieck. There’s no such thing as difficult personality. This is our bodies and we are entitled to treat them in a way that’s acceptable to us. There are no right or wrong answers and I’ve found that medicine doesn’t have many answers. Now that you mentioned the HRT, you’re right it may be causing the liver issues, however, I was just listening to a podcast with menopause doctors who advocated how beneficial HRT is so I’m all in favor of it. I don’t want to use the word “lucky” bc there’s nothing lucky about cancer but… it’s “good”the tumor didn’t rupture in laparoscopic surgery so you stayed at 1A (they often rupture based on my readings) and it’s good it must be hormone receptor negative if your docs were ok w HRT. Clear cell is usually, but not always ER negative. When it’s ER positive, it’s quite the conundrum to figure out if one goes on HRT or not.💕

[Django123 in reply to Doggies221]

If you use estrogen in patch form it bypasses the liver and isn't metabolized there, so it's safer for women with liver issues. Hope this helps, and good luck. --Lani

[Jholly4]

Hi Marieck my liver function has been tricky since my debulking for 1c3 ( no chemo as have mucinous oc which has little evidence of benefit from chemo). Like you developed severe right abdo pain, they saw some sludge in my gallbladder on ultrasound at time of pain which can happen after big abdo surgeries but follow up, MRCP was ok. As liver function continued to be an issue ( although levels are better) without any obvious drivers ( not on any meds, vitlral blood normal and no alcohol) CT was done to check nothing going on in abdo and pelvis which again reassuringly came back ok as did CA125 and CEA. Pain has settled so I do wonder if it was the gallbladder sludge just irritating it all and that has now cleared. It was being monitored for a few months to see if it was all related to how my system responded to the surgery but they have asked liver team for consult if it doesn't normalise at next week's blood review. I was pleased they scanned to check especially as I was 1c3 so was a risk of cells settling elsewhere but so far all good.

[Marieck in reply to Jholly4]

Thank you for your reply. It’s all so complicated and after oc you can’t help but worry about reoccurrence. Glad to know it turned out well for you. Were your ast and alt blood number elevated ? Mine were very high.

[Jholly4 in reply to Marieck]

Yes ast, alt in addition to gamma gt and alk phosphate. Hoping next Mondays bloods show improvement back to normal.

[Jholly4]

So this week's bloods show alk phos rising again so despite normal scan they have asked for a liver specialist to review. I expect I will just be an anomaly rather than anything to worry about.

[Marieck in reply to Jholly4]

I am hoping the same for myself. Wishing you the best. My numbers are close to normal now

[Susi3]

Dear Marieck,

Sorry you are going through this. It could be something else, but keep a close eye on that! If it is a recurrence maybe you can catch it early.

I'm in a similar situation. After OCCC staging surgery back in September and 1A stage, I opted for observation based on NCCN guidelines. I started to have pain in my right chest and shoulder about 6-7 weeks ago. CT chest scan was clear, and we wasted 6 weeks treating 'pleurisy'.

Went back and repeated chest scan, still clear. This time they scanned my abdomen and found there were tumors in my pelvic and abdominal area, including one on my liver. I have since learned that liver nerve pain is 'referred' to the back, chest and shoulder. My liver enzymes have started to elevate in the last week as well, and I'm starting chemo in a few days. I don't have other targeted treatment options since I have no gene mutations. They will now test my tumor slides. I am not going to beat myself up, I had studied the statistical effectiveness of chemo for OCCC 1A extensively, and I believe that front line chemo would not have prevented my recurrence (Gyn Onc surgeon at major cancer center agrees with me). Please keep us posted on your developments, M, I will be thinking of you (*

[Marieck in reply to Susi3]

Oh wow yes I agree completely it’s awful to feel something is wrong and have doctors find nothing. My numbers are almost back to normal now and I did have a scan but I will definitely be making sure they scan again in six months to be sure. Thank you for sharing I hope everything goes well for you.

[Susi3]

Thank you. I would add that I was on a 3- month surveillance plan. My 3 month looked great. This fast moving thing developed in about 8 weeks time, and it is currently inoperable. If you're on a six month schedule, please don't hesitate to get looked at sooner if you have weird symptoms.

[Marieck in reply to Susi3]

Thank you will do. I was getting checked every three months but stomach and chest scans every six. I am also monitoring ca125 while it was only 39 at its highest it is now 7 so a rise could be an indication. The hard part is that in order to be found cancer has to grow big enough. I hope everything turns out well for both of us. Also the new surgical menopause is new for me and at times I don’t know if I could be having symptoms of that or reoccurrence. I also did my research and decided to monitor for the same reason you did so I relate to that a lot thank you for responding

[Doggies221]

hi Susie3 and Marieck. First, Suzie, I’m so sorry about the recurrence. I agree that frontline chemo might not have prevented the recurrence and you acted very rationally in your chemo choice. My research into OCCC seems to suggest that every person’s OCCC is driven by different mutations. I wonder how a cancer can appear the same under a microscope but be driven by diff mutations in each person (which would suggest a different behavior ?). Anyway, when you say you don’t have mutations Suzie, I assume you mean no inherited familial germline mutations but your tumor must have some mutations. I think you mean that they’ll test the tumor slides for those types of mutations in the tumor and they should also do all kinds of immunohistochemistry tests T I show if it’s HRD positive or negative, in addition to PD-1 bc there are different non-chemo therapies based on these markers. For now, did they offer to put you on the regular chemo - carbo/taxol? Also, look into trials for precision therapies. Wishing you the very best and keep us updated!

[Susi3 in reply to Doggies221]

Hello Doggies221 and Marieck,Sorry I didn't see your message sooner, Doggies221! A lot has happened in my case since then, and I'd like to answer your questions and share an update.

I am currently on my third round of taxol, carboplatin, and Avastin. After first round my CA125 dropped from 263 to 161, which seems like a good sign. It was 159 at start of round 3. Other positive signs are that my tumor pains disappeared, and tumor related nausea is waning. My liver enzymes are trending in the right direction, which gives me hope that my liver tumors are on the surface and not invading my liver. I'm waiting for CT scan results to see if there is a response to treatment.

Somatic testing of my initial tumor slides showed a few mutations (incl. ARID1A), HRD not detected, and HER2 positive. HER2 is correlated with worse outcomes in OCCC, but it also gives me a little hope that maybe I can get into a antibody drug conjugate (ADC) study, or possibly off-label use. My gyn/oncology requested HER2 specifically, and he runs studies at UCSF. There is an encouraging preliminary data from study (multicenter phase II open-label trial (DESTINY-PanTumor02, NCT04482309)

Fingers crossed!

[Doggies221 in reply to Susi3]

Susie, thank you for updating us. It sounds like your gyn oncologist is good if they’re at UCSF. Precision medicine is probably the best way to go. Recently read that XPO1 (an existing drug) shows promise for OCCC:

onclive.com/view/preclinica...

Good luck and stay strong 🍀🙏💕