Ca19-9-9

Hi welcome to the mac community, its a great club but we are always a little sorry to see new members.

I had never heard of CA19-9 before, but did a little reading. Like most of these markers (including CA125) it is only a indicator that you might have cancer, there are other benign issues that can cause it to raise and they might need some kind of treament too Even found one research paper that linked raised CA19-9 to he excesive consumption of tea.

Waiing for tess/results etc is really hard but in general if they are really worried things move really quickly so perhaps that is a good sign.

<<hugs>>

Steve

Hi Lou

Sorry to hear that you are having to go through this. This stage of "the unknown" is the scariest part because you don't know what you are facing. 

My CA125 has always been normal, my Ca19.9 was raised when I was diagnosed with OC. I had a large tumour on my left ovary. When they operated and removed it, the tumour wasn't a typically presented  ovarian cancer. It looked more like a bowel tumour- which explains the high ca19.9 count. In the end I was diagnosed with mucinous adenocarcinoma which is a mucus producing cancer stage 1C. I was treated with adjuvent bowel chemotherapy for 6 cycles (adjuvent because it hasn't spread but it had let off some mucus and they wanted to kill any stray cancerous cells). I'm giving a lot of detail here because it's such a rare cancer and it was hard to get the right diagnoses and treatment. It is, however, if caught early, curable which is the best news! I am now one year clear with no problems and have my right ovary and am ovulating! Like Steve says though, these CA blood tests aren't the best determination. I hope you get the answers you need and I haven't scared you.  If you need to ask me anything, please let me know. Wishing you all the best. Xx

Ive got a raised ca125 level! 1st blood test was 135 second 105. Scared me as i know its a marker for cancer. Had second scan today and been diagnosed with around 6 fibroids and ovarian cyst. Doc said it can be raised for a number of reasons.

Hi Gemmak,

I hope you don't mind me messaging you after all these years.

I have been diagnosed recently with the same as what you had with stage 1c1 mucinous adenocarcinoma in my left ovary.

I had surgery 10 weeks ago and they removed the tumour, ovary and tube.

My gynaecologist told me that the operation was a success, they took the tumour out, ovary and tube. They also blasted (their wording) 3 bits of endometriosis that they found. They took samples of omentum which was also negative for cancerous cells.

I had a 5cm benign cyst on my right ovary which was drained. They kept it in place as me and my husband were hoping to start trying a baby in January, but unfortunately we couldn't because of all this.

Unfortunately when removing the tumour, it leaked a little when bagging it up. If it would have been stage 1a if it didn't leak. The washings they did before and after the removal were negative for cancerous cells which is good news. 

My gynaecologist did inform me that I would have to see an oncologist because of the findings in the tumour. He also informed me that they got all the cancerous tumour out and that I should have my babies and then once I am done, I should have a full hysterectomy to rule out any other problems I might have or cancers that may occur in future.

I saw my oncologist and she informed me that as mine was a low stage, that she is happy to do a watch and wait but will write a letter to the Royal Mardens Hospital to ask their advice.

In the mean time I had my blood markers tested last week.

Before operation my CA125 was 20, last week it was 13. My CA 199 was 73, last week it was 24. which my oncologist said was amazing and very good.

Yesterday my oncologist called me, she had a reply from the RMH saying that Doctor is not sure what to suggest as the findings from the biopsies of washings were negative and my bloods were amazing. That the DR at RMH feels the decision for chemo or not would be up to me but will send my file to the weekly meeting with other doctors at RMH today for discussion.

I am worried and very upset by this.

I am worried that if I have chemo, I will lose my hair and become infertile after. I am 37 next month and was really hoping after the operation, I would be able to try for a baby.

I have seen your post before Gemma and suggested with my oncologist yesterday that if the RMH recommend chemo, could i have the bowel chemo like you had. which she said yes it could be done.

I note that you have regular periods and ovulating now (or in 2014), can I ask if you conceived a baby naturally after or did you use your harvested eggs?

Did you have to pay to get your eggs harvested please?

I am an emotional mess about all of this. See my mother passed away a year ago from breast cancer (BRCA gene Negative) and I was with her for all her treatment and till the end. So I am struggling to deal with her passing and all this with me. I know chemo is a big deal and can affect you mentally.

My poor husband is struggling too as he lost his mum over 14 years ago from cancer and is so upset.

I just feel so down and depressed by it all.

I just don't know what today's meetings decisions will be. If they make me choose I don't know if I should do a watch and wait, have a baby and pray I will be ok or have chemo and hope I can have children after.

I would be so very grateful if you could let me know how you are doing now and how you dealt with this, esp on the baby side of things.

Love, Ally xxx

Hi Ally

i do not think that GemmaK still reads the forum  

i met with GemmaK for a coffee and chat a couple of years ago when I was deciding on chemo etc. Also like you and GemmaK I had mucinous oc stage 1C. 

Although I got a second opinion at RM as well ( I went down there in person) they would not recommend the bowel cancer regime for me. Only the standard Taxol/carbo plating is being treated via NHS. If going as a private patient other options can be available. 

I was also low grade. I opted for chemo but others have opted for watch and wait. As I did not have any symptoms I had nothing to look out for and would have been forever paranoid about every twinge. 

It may well be worth looking on the Ovacome forum as well as there are maybe more ladies with mucinous who post there. 

As I am not in the child bearing age my options were more straightforward. 

Best wishes

Fay

Hi Ally,

Sorry ive replied so late, for some reason my emails are going to my trash. 

Im so sorry to hear what you are going through and can relate to you completely. It’s horrible. However, it sounds like you are a lucky one like me (lucky in the sense of cancer patients!) and that they’ve got it all out but are treading on the side of caution re chemo. It’s not really fair that you have been left to make the decision re chemo on your own. If you give me your number I would be more than happy to have a call/ share WhatsApp’s with you and give your my advice/story. I have not had babies yet but I do plan to and I seem to be fertile as far as pee on a stick fertility tests go! 

I harvested my eggs on the NhS (only managed to get 5 because I was on a 2 week fast track stimulation and Harvest but... you only need one in the end! Also, before and during chemo, they gave me an injection (the name began with ‘Z’- I’ll try to remember it) which put my right surviving ovary to sleep and protect my eggs from the chemo. 

I am 4 years clear (from the end of my chemo) next month which I hope is music to your ears :). From the bags and bags of research I did (and I’m sure you’ve done the same!) if caught early, our type of cancer is curable. 

In terms of starting a family and whether or not to delay chemo/ have chemo... it’s a very difficult decision. The doctors should guide you more definitively on whether chemo is necessary. My doctors very much encouraged it as an “adjuvent” process. I did not have any leakage when it was taken out however I did have quite a lot of liquid build up in my perineal cavity which they washed out during surgery. 

Have you had a PET scan? 

Hope to speak to you soon. You are doing really well, it’s the unknown and not knowing what’s best which is the worst. I hope I can help you.

lots of love, Gemma xxx

Hi Gemma and Fay,

Firstly thank you both so very very much for replying to me. I really do appreciate this and my husband does too. We are so grateful.

Thank you both for letting me know how you both are now. It's great news and I wish you all well for now and the future. It's great news!

My Oncologist and Gynaecologist asked for a second opinion from other members of staff at the Royal Mardens and the outcome was the same. Full hysterectomy and 6 bouts of chemo. My Oncologist and Gynaecologist feel that the RM haven't read my file properly and haven't taken into account my age or that we haven't had children yet. I don't blame them, they are advising the safe way for this to never come back.

A recent study was published in a top medical journal about Mucinous Ovarian Cancers would you believe. Esp a case like mine (ours). They say that the only best form of treatment for those who wish to have children, is just treatment. There are 2 types of mucinous cancer, there is the one that is likely to come back - called Infiltrative and the other where is less likely to come back - called Expansile. Thankfully my oncologist told us that I have the one that is less likely to come back, the Expansile one.

After her having a MDT (meeting) with my Gynaecologist and team of surgeons who operated on me, they still do not agree with the RM and in cases that they have seen similar and the recent published article (which goes in my favour), they agreed that it's best to do watch and wait. Try and have my babies and go ahead with a full hysterectomy after children. which we are happy about.

The RM suggested I have cameras down and up both ends to rule out that it started in my stomach and bowel, which I had on Thursday last week. They seemed fine, I found out I have a hiacus hernia. Again another thing I didn't know about but it's good they found these things. There was a very tiny polyp in my bowl which they cold snared and sent for testing. I was told there is nothing to worry about.

I am just waiting on my MRI and a blood test beforehand. If all is ok, then we can try for a baby please god. My Oncologist Dr Donovan, has informed me that they would want to do blood tests and MRI scans every 3 months, which is fantastic. My dad is happy as he says they are keeping a very close eye on me, which is brilliant. I have to say that my Oncologist Dr Victoria Donovan and my Gynaecologist Mr Papadopoulos based at Darenth Valley and Maidstone hospitals are brilliant. Very kind, caring and considerate towards me and my husband.  

It's just an emotional rollercoaster. Something that no one should ever have to go through.

I am glad I found you both, someone to talk too and share this experience with.

Gemma my number is 07912 941 058. It would be great to hear from you.

Lots of Love,

Alison xxxx

Hi i have ovarian cancer - my ca125 is only slightly raised but my ca19-9 is sky high. thi sis because my cancer is a mucinous cancer and mucin producing tumors raise the ca199 - hope this helps