during an operation to remove what was thought to be endometriomas it turned out i had stage 3a serous borderline cancer.

[sem10]

I had a full hysterectomy plus removal of omentum. I have never seen an oncologist or spoken to a cancer nurse im presuming its because i had borderline cancer and do not require further treatment, but it would have been nice to have an experienced person to talk to has anyone had similar experience.

[charlie12]

Hi Sem 10

I also had this diagnosis, in January 2010. My mass was expected to be a large simple cyst, but 2 months later I was told it was a borderline tumour. So I can understand how you are feeling. It is true that no chemo or radiotherapy is recommended, as these tumours have only a very low incidence of recurrence and if they do come back surgery is the recommended treatment.

I hope you are getting over the surgery and that you are having follow up checks ? Different areas ave different approaches. I am fine now, really enjoying life again and I am sure you will be too soon.

However , because you don't need chemo or radiotherapy does not mean that it is the end of the matter. If you want or need to speak to somebody about how things went , or how you are feeling or any other related matter then you should have this option. Speaking to Ruth, the support nurse at Ovacome was incderibly helpful for me, so do consider giving her a call.

Also , drop me a PM if you would like to chat further.

Take care

Love

Charlie xxxx

[sem10 in reply to charlie12]

thank you charlie

Just hearing someone else with a similar situation makes me feel better . I think its because there is so much confusion over if it is or isn't cancer. I read that borderline cancer does not spread yet both my ovaries were affected and there were micro invasive implants on my omentum. Also when people ask i feel a fraud saying i had ovarian cancer but then its too much to go into detail re borderline cancer as people have commented on it being similar to having an abnormal smear. Its good to hear u r well and im definately getting there myself i just have some unanswered questions which pop up from time to time so its good to have people like urself to chat to thank you

take care

sem10 xxx

[wendydee]

Hi Sem10

I had borderline ovarian cancer 9 years ago. I know I had CA125 checks regularly for 5 years and I can still request one if I like, but they are no longer used as a diagnostic tool as much as they were. Other signs and symptoms seem to give a more reliable indication of recurrence. I do some voluntary work on a survivorship programme with Macmillan, so I know there is some info on their website, but as Charlie says, the Ovacome helpline nurses are brilliant. The fact that it was borderline cancer, although it must have been a hell of a shock at the time, gives you very good chances of a full recovery. However, maybe the hospital where you had your op can put you in touch with a gynae/oncology nurse specialist. I find mine really helpful and reassuring if I have any concerns or queries.

All the best for continuing good health

Wendy xx

[sem10]

Thank you wendy for responding that alone helps. I worry about the inaccuracy re ca 125 and as i have had a full hysterectomy what signs and symptoms should i be looking for if it returns will it be similiar to previous symptoms of ovarian tumours.

Its good to hear that you have been well for 9 years and long that may continue. Im 32 so still have a lot of living to do myself. I will check out the macmillan website for further info .

thank you again

sem10

[Tracy29]

Hi all, i am a new member to the site, I am 29 and recently had a salpingo oophorectomy ( RH ovary + fallopian tube removal) as there was a 13cm mass on it which after biopsy was confirmed to be a borderline ovarian tumour. There were also growths on my LH ovary but they were thankfully able to save this one. I am so grateful to have found this website, as I am sure I am not alone in saying that there is such limited information about "borderline" ovarian tumours. And having searched the internet for further information, it is very confusing and in some areas, conflicting information. I had an excellent gyn/onc consultant, who has written back advising that it is "bland" and they consider there to be a very low risk of any growths turning into something more sinister in future, which of course is great news, but i still feel very vulnerable. I have a young old son, and my fiance and I are hoping to have a baby of our own soon, but I feel veel very much at a loose end with regards to the meaning of " borderline" and there seems to be such little information and research into this area of ovarian cancer. also, when I was initially told about this I had, as we all do, to tell my family. Upon walking out of the hospital that evening, my family felt extremely isolated as they had not been given any advice with regards to the possibilities/outcomes of such a diagnosis. SEM10, I think you are right, you do feel a fraud to say it is ovarian cancer, and to all intents and purposes if you are like me, you are no doubt extremely grateful that it is not, however, there is no reassurance in a "borderline" diagnosis. in fact, there is what seems to be a large black hole in terms of what this type of tumour is and it certainly doesnt offer the reassurance of a "benign" diagnosis! I am currently recovering from my operation, but once recovered, I hope to be able to get involved in some way in further raising awareness of this type of tumour. I wish you all well x

[sem10 in reply to Tracy29]

hi tracy

so sorry to hear about your recent op and diagnosis. I am now 7months post op and actually starting to feel better than i have in a few years so there is hope. I have read about everything i can an serous borderline tumours and i am still no further forward lol . My gynae said that there has only been 264 cases in the last ten years not sure if thats in scotland or britain and they are still not fully sure re best treatment. As it stands just now the best treatment is surgical removal as it does not respond to chemo. As for feeling like a fraud im over it now i think i and every other borderliner will agree that although very lucky that it is low grade it is still a very scary diagnosis and painful procedure. Apparently it was classed the same and treated the same as other ovarian cancer until about 40 years ago however was identified as different.

As not to complicate people who ask me if i had cancer i reply i had a low grade non aggressive cancer that makes the conversation easier. Although it had spread to my omentum which confuses me as apparently it does not invade other tissue anyway thats a question im going to have to find out lol more research for me .

Hope you feel better soon and contact me if you want to discuss anything further .

take care

sem10 xxxx