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CA125 results back - not good. CA125 results back - not good.

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Unread 03-27-2003, 07:30 AM
CA125 results back - not good.

Okay I'm crying now. My G.P. 'phoned me with my tumour marker test results as she said she would. The CA125 is 80, the others are normal. This "very strongly against unnecessary hysterectomy" lady advised strongly that I have a total hysterectomy and bilateral salpingo-oopherectomy and said she would definitely do this herself in similar circumstances. So the hope I realise I was still nursing, that I would have a low CA125 and feel able to ask for conservative surgery, is now blown. And this very honest lady made it clear enough that she thinks ovarian cancer is a real possibility. I see the gynaecological oncologist on Tuesday and she expects he will schedule surgery immediately or at the very latest the following week. She urged me to push him to operate as soon as possible. I feel totally stunned, terrified and grief-stricken. I don't want this at all.

My G.P. has scheduled another appointment for me to see her tomorrow morning if I wish as she feels I will think up many questions. I haven't so far, but I would like to take up her offer. Any suggestions as to questions to ask? She has also offered medication to help me sleep. (I have been sleeping badly since the ultrasound revealed the "mass", through anxiety - this is not typical for me.) I said I would think about it but I had never taken sleep medication before. She said I would be doing a lot of things over the next few weeks that I had never done before.

How do I get through the next few days? I had a mad idea of going to Lourdes in France for the weekend. (I live in the U.K.) I do not feel ill at all. My haemoglobin is back up to 12 from 9 (probably higher by now in fact). I want to present my gynaecologist with a miracle cure. Da da ...!!! I think I'm going mad. I'll stop rambling. Any suggestions, comments would be very welcome.
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Unread 03-27-2003, 08:22 AM
Praying for You

Adding you to my prayer list. I'm glad you're going to a gyn/onc as they are the specialists to have if there's any hint of cancer.
CA125 can be elevated for other reasons. I know this is something you didn't expect or want to hear--ask questions of all your doctors, become informed and ask us anything woman-to-woman you have. They won't know "for sure" until they do the surgery and do pathology on what they find. Best wishes.
Unread 03-27-2003, 08:23 AM
Go to Lourdes!

I'm sorry I can't be of help from a medical perspective, but given what my mom and family have recently been through, (TAH, BSO, dx of uterine adenocarcinoma stage IVB), I would definitely suggest that you go to Lourdes, see an inspiring or fun film, spend time with friends and family, and let yourself feel what you're feeling. No matter what answers you ultimately get from the docs, remember what you are potentially facing is a life-changing event, not necessarily a life ending event. I've been so heartened and inspired to read about all the incredible women at this site who have been through really difficult stuff and have not only survived, but thrived.

That said, I can imagine how I'd feel if I were in your shoes. I think it's 100% OK to feel awful and freaked out, etc. That's how I felt when I found out about my mom. Since then, we're taking time to re-arrange priorities and re-affirm why and how much we love one another. It's a hard time ahead, but others have gotten through it and so can we.

I'm sending all my positive vibes your way. And as I haven't been back to France since 1995, I'd live vicariously through you if you do go to Lourdes!
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Unread 03-27-2003, 11:39 AM

Latina, just want you to know that the ca125 test is not a true cancer test... I was told the end of Feb that my ca125 test came back 109.. I went to another doctor and and they did the test and it came back 115... I had a mass on my left ovary 8cmx8cmx8cm...So they scheduled me for surgery on March 6th..I felt just like you. But the night before surgery my doctor called to see how I was doing and told me she has some good news for me..She said she ran 3 other test for cancer and they all came back within normal limits so she said they felt better about it...So the next day I had my surgery..Turned out they had to do the hysterectomy first then take the mass out because it was stuck behind my uterus..AND it was BENIGN..So please don't go by just the ca125 test they are not accurate..My thoughts and prayers are with you...Hang in there...
Unread 03-27-2003, 01:47 PM
CA125 results back - not good.

's Latina. Waiting is very hard. Ca 125 can be elevated for many reasons and tumors can be benign. The only sure diagnosis of ovarian cancer is a surgical biopsy of the area. You are in good hands with a gyne/onc.

Keep a pad of paper handy and jot down questions as they come to you. Ask questions and keep imformed. Come back to this site as often as you need. Thats what I did. It helps to have a support network of wormen who really know how you feel.

Ruth S
Unread 03-27-2003, 02:49 PM
CA125 results back - not good.

s Latina

I am sorry to hear that your anxiety has risen. But do keep in mind, ca 125's are quite often elevated for other reasons. And an 80, although elevated is not that high. My own was in the 900's.
Great that you are seeing a gyn onc.
Like everyone is saying, unfortunately if takes surgery to know for certain.
Hopefully your mass will be benign. But if the news is not so good, remember there are quite a few of us posting here, with advanced ovarian cancer, who are surviving and thriving and living very full lives.

Unread 03-27-2003, 03:22 PM
Huge Hugs


I agree with the others dont frett over the ca-125 it can be elevated for many reasons. I myself had a ca125 of 235 and that is one of the things that prompted me to surgery. I had a pelvic mass around my ovary, so the two of those prompted me to have surgery. Luckily I didn't have ovarian cancer but more so, like I said it prompted me to have surgery and that is when they found the cervical cancer. Otherwise they wouldn't have found the endocervical cancer until it was too late.

So, what I am trying to say is that dont frett too much. (I know easier said, than done) But just keep in mind that the ca125 can be elevated for other reasons, not necessarily cancer. Audrey, which posts here occasionally had a high ca125 and hers was caused by endometrosis (I think). She did not have cancer.

Take heart and know that we will be praying that when they do surgery that the mass is benign.
Unread 03-27-2003, 08:16 PM
CA125 results back - not good.

Hi, Latina!

Did they already do a barium-assisted CAT scan to identify the tumor? If so, did they find a fluid called ascites? I think you mentioned previously that you had a distended abdomen. Ascites can be present in benign or malignant conditions, so I was just curious. Oddly, my ascites did not show the presence of malignant cells. Yet . . . I have a malignancy.

My CA125 was 161. They will test it again tomorrow, so I'll be interested to see what it is now. I will be looking forward to watching it go down while I'm undergoing chemo. But as others have said, a high CA125 can be due to a wide variety of factors.

I wish you the very best of luck with your surgery. I'm glad your hemoglobin is up. Mine is 11.3 or something, so I need to get it up as well.

On a personal note, I would try to get the surgery done as quickly as possible. You have five beautiful children, whom I'm sure are daily blessings in your life. You need to be there for them. Don't worry about the hysterectomy. If it's necessary to ensure that you'll be here next year, it's a very small price to pay.

Questions . . . . I think you'll have more after the surgery. The good women on this board have posted many hints and tips abot dealing with life after a hysterectomy. The most important thing for you will be not to lift your children for a good while, and to get some help with your kids while you're recuperating. My surgery was 20 days ago, and I am up and around, though a little hunched over sometimes. I still have pain, and am still having trouble sleeping. But I think I'm healing a lot faster than a lot of people, so for that, I am grateful.

You might want to ask how soon the pathology from the surgery will be available to you. The pathology make take a week to get back, but . . . often the doctors can tell you by the next day what you're actually dealing with.

If it is ovaca (and I hope it is not), you might want to ask them how soon they would expect to start the chemo. I think they usually try to start it within a month. For this surgery, hospital stays seem to vary: 3 to 6 days. You'll need to pass a few milestones (walking, passing gas, holding down solid food, etc.) before they will let you go home.

You'll need a tummy pillow to take with you to the hospital. That was the best advice I got. It's just a small pillow that you hold it to your belly when walking, or when getting up to go the bathroom. Otherwise it feels like your insides are spilling out. They aren't, but it will really feel like htat.

Some nice-smelling lotion also helped me, as I could only sponge-bathe while I was in the hospital. Tangerine and passionfruit! :-) I also brought a small stuffed animal to hug. And had lots of visitors, which helped.

I have been and will continue to pray for you.

Many s!
Unread 03-28-2003, 04:42 PM
CA125 results back - not good.

Thank-you for your replies and prayers.
Izzymac - what a wonderful story - so glad the tumour was benign.

SirenSong - I did not have a CT scan so I don't know whether or not I have ascites. The only tests I have had are the blood test for tumour markers plus the original ultrasound scan. However, my G.P. seems pretty sure it may be cancer and wouldn't really humour my attempts to get her to say nice soothing things. She actually cried when I said my greatest fear was dying before my baby had grown up.

You are right that hysterectomy is unimportant compared with continuing to live as well as possible for my children: they are great blessings. I am fast reconciling to the TAH BSO requirement.

I think I have found myself in the hands of quite a good medical team. I see the gynaecological oncologist on Tuesday and I am going to press hard for immediate surgery. My G.P. is also going to do this by letter and 'phone. I find this wavering between hope and despair very tormenting and now just want to know one way or another. I will have a good idea straight after surgery and know all about a week later when the pathology reports are back. Then, if chemotherapy is necessary, that will start about four weeks post-operatively.

Thank-you for your support. SirenSong I will be thinking about you and praying for you on Monday when your chemotherapy starts.
Unread 03-28-2003, 05:11 PM

Hello Latina. I am so sorry to hear about your problem. When my GYN ordered a CA125 for me, he told me that it gave them data about endometreosis as well as ovarian cancer. Both my mother-in-law and sister-in-law had high CA125 readings. My MIL had ovarian cancer which was successfully treated with surgery and chemo two years ago. My SIL had endometreosis which was also successfully treated with TAH and removal of ovaries and endometrial tissue.

Please try not to worry. I am glad you are being seen next week. Will be thinking of you,

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