OvCa: 7 years post hysterectomy -- now have large pelvic mass

I haven't been on here much in the 7 years since my vaginal hysterectomy for cervical cancer. They removed my uterus and left the ovaries, despite my family history of cancer (aunt died of ovarian, mom passed away from liver, dad passed from lung/esophagus, etc.).

I have been a very good girl and followed all doctor's orders and needed no further treatment after my hysterectomy but went to every followup in the 7 years since.

At my last ob/gyn visit last year I was told I was probably pre-menopausal due to some symptoms such as bladder issues, fatigue, sleep problems, etc. Ob/gyn recommended hormones, which I tried for about 3 or 4 weeks, but felt no better so I stopped which doc said was fine. Also went to my general practitioner about 6 months ago and told him I just wasn't feeling "normal" so he ran routine blood to check for thyroid, checked hormone levels, etc. and everything came back with normal results.

Fast forward to last weekend when I went to Urgent Care thinking I had a very severe bladder infection that came on suddenly. UTI tests came back normal so the doc suggested that I had a kidney stone. CT scan and ultrasounds have subsequently discovered an 11 cm pelvic mass and an elevated CA-125 (60) are now indicating possible ovarian cancer.

Now I am just waiting for my referral to the gyn/onc this week to find out next steps. My family doctor indicated that this will likely be handled with surgery within the next few weeks since I cannot tolerate living with this pain and discomfort.

I look back now on how I've been feeling for the last year or so and realize the signs were all there: bloating, distended belly for no reason, bladder issues, fatigue, etc. Kicking myself for not asking for an ultrasound earlier, but I assumed it was other issues like irritable bowel or just plain gas.

Feeling very out of body right now trying to wrap my head around this grapefruit-sized mass that is now messing with my life. Confused, frustrated and concerned.

(((Janet))) I am so sorry you are facing a possible new surgery and have the cancer scare all over again. I think you were taking steps to respond to your symptoms by talking with your gyn last year and your PCP six months ago. When our docs give an OK after check-up it's easy to fall back and think all really is fine. The main thing is you will be seeing a gyn/onc and I hope this takes place soonest. I will be keeping you in prayer and sending positive thoughts. Please keep us posted.

I'm sorry you are going through this. You went in when you should have and you'll see the GYN onc who I hope will see you soon. The rest is wait and see----the hardest part. Hang in there. Sending support and hugs.

Janet, I started a thread very similar to yours about a week or so ago, here. Same thing: 6 yrs. past endometrial cancer, hyst, rad. tmts. Telling me I was fine and here I sit, advanced cancer. All they ever did to check me was a Pap, pelvic, rectal each visit. I had, like you, a trip to the ER for abd. pain. CT showed things. Now I know what it is. And yes, you are right. It feels otherworldly, surreal. It feels sickening to me. The protocol for follow up is not good enough. And with your history, I feel you should've had a BSO with the hyst. But I'm not doc, so I can't play one. I'm feeling really down right now, having all kinds of appointments in the next weeks, chemo staring at me.

All I can say is, I know what you are feeling. There are probably better treatments for your case than there are for mine, from what I've seen and heard. Get on it and you'll be doing the right things.

(((Janet)))

I just wanted to stop by with some more hugs and prayers for you!


monami

Just wanted to pass a hug along. I come from a family like yours (2 cousins, 2 aunts and their mother -all bc, ov , lymphoma and leukemia cancers).

At my surgery the bso was my choice, the Dr said there was no criteria whether it was called for or not, but with my family history we decided for a bso.

Did you not have any CT scans for followup? I get a yearly scan (ok the first few years found stuff so led to others)? I think there is some discussions among gyn/onc whether to scan or not.

None of that matters now, just keep focused on getting well, treating yourself (indulge)-because you deserve it!

a

First, we are with you. As we were years ago, you still have friends on this board.

Annabel brought up how we have heard lately that people think doctors are doing CT scans too much. I'll take my chances on the scans. I still have one, more than four years from treatment, every eight months now. My doctor is a firm believer in never going beyond a year for a scan -- scans show things that xrays and regular exams can't.

I know the waiting is tough; you just want the surgery done. It will be soon. Come in any time it starts to get to you.

I also get a scan every 6 months... don't like it and they are costly, but after seeing the last few ladies with recurrences, I guess I am glad my gyn/onc wants them.

Thank you all for the words of encouragement and support. I met with my gyn/onc today for the first time and it looks like we are going for a daVinci BSO on 9/21 unless they can re-work her schedule to get me in earlier.

I spent the hours since my 11:30 appointment having a little pity party for myself. I realize that this is my worst fear come true and I guess I am finally accepting the reality that I will be in menopause at age 46 and hope that this thing is not as bad as it could be.

I am in the "grey area" ... mass is not "water ballon-like" and likely benign (it has walls within it and is only partially fluid filled) and yet my CA-125 isn't all that out of range. But if my gut instinct is correct, this is deja vu all over again (last time they told me it probably wasn't cancer and it was).

I know all of that stuff about thinking positively, but for just today I am allowing myself to grieve and then I will do my best to look for the bright side in all of this.

Thanks again for "listening". I do appreciate the kind words.

I am also praying for u I just had sergury 7 eweeks ago and I've been very scare about a lot of thing that could go wrong with me