Hi, I had surgery (total abdominal hysterectomy and removal of both ovaries - TAH/BSO) 3 weeks ago to remove grapefruit sized tumors on both ovaries, also removed my omentum (sheet of fatty tissue) .
Thankfully, the surgery went well and doc says all visible traces of the disease were removed. And am feeling extremely lucky that pathology determined they were low malignant potential (borderline) serous type and that the implants were not invasive and no spread to any of the 34 lymph nodes that were removed.
However, I am wondering if it would be wise to get 2nd opinions on the pathology and the treatment plan. Not sure if my insurance would cover it...The pathology was done in large regional hospital and I have no particular reason to suspect any issues, but just worried in general that something may have been overlooked. My obgyn oncologist has been awesome and is very well known and respected and he advised that chemo is not effective on this stuff and the initial plan is just to monitor CA-125 levels (mine were 375 before surgery) and visit him every 3 months for next 2 years. I understand this can recur as borderline or malignant, especially with this advanced stage, and am just really nervous 😩. Any words of wisdom would be appreciated, and would be great to connect with others with similar diagnosis !
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Heidi-CA
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Hi Heidi, Glad you found us all the ladies will on this site can and will give you some good advice and encouragement when ever you need it. You seem to be happy with your oncologist and he has said he will keep a eye on you, this is normal every 3 months and it's normal for you to nervous,
Maybe you could give yourself the first 3 month to get over your surgery and just get your head around what you have gone through then see how you go.
After seeing your oncologist if you still feel you would like a second opinion then do.
Hi Lorraine, very nice to meet you and thank you for the sensible advice. I suppose not much can happen with this in 3 months except I will probably be less emotional at that point. 🤓
Welcome to the group. Sorry to hear about your diagnosis but you are in the right place for help and support. My cancer wasn't borderline so I will let others with the same diagnosis reply on that.
On the second opinion- my attitude is that you must feel that you trust those treating you and if getting a second opinion is going to put your mind at rest I would go for it! All the best Lyndy xx
Welcome to the club no-one would willingly join! I can only endorse what the others have said already and I'm sure you will be contacted by women with a similar diagnosis. I would just add to find out as much as you can about your particular tumour (if you feel up to it - it's not for everyone) and never be afraid to ask, ask, ask. It's your body and your future.
No-one wants this monstrous disease but like me you have a good prognosis (though they didn't say at the time). Mine was stage 1, massive and mucinous and I've since discovered wouldn't have responded to chemo (it was hard to access information in the dark ages of the 80's!).
Wishing you all the very best with your revovery. Be sure to be easy on your body; it's had a huge knock.
Very nice to meet you. I suppose to try to put a positive spin on this - this is a very exclusive club that we belong to, its very hard to qualify to get into 😏.
Thank you for your words of wisdom, it’s reassuring to see that things sometimes do turn out very well over the long term.
Wow, to think the 80s were the dark ages...I am getting old!
Hi Heidi and welcome to our gang, none of us want to be in it but we are all so very glad we are members, we’re a lovely friendly bunch and some of the knowledge on here is truly outstanding.
Firstly, well done on having your surgery and the excellent results from it. You don’t say what your CA125 was post op but I am assuming that was back in the ‘normal’ range?
Like Lorraine has said, perhaps it would be a plan to initially give it 3 months and then at your next appointment see how things are and then, if you feel it is needed, seek a second opinion. If your obgyn is well respected take some comfort from that but don’t be afraid to ask questions at any point.
My diagnosis was different to yours, post surgery they believed they had removed all trace of the disease but because I had stage 1c3 clear cell carcinoma of the left ovary it was recommended I had the chemo. As yours was classed borderline, in that situation I, personally, would be happy to have the 3 monthly appointments as you will be being very closely monitored and things can be picked up quickly + there should be the caveat that you are able to contact your medical team at any point if you are unwell or symptomatic so you are able to have some peace of mind which is so very important to us all.
I am sure there will be some advice coming your way from other ladies who had/have a diagnosis similar to yours.
Take lots of care of you, continue to heal after your surgery and be as well as you possibly can, big hugs and love from across the pond ❤️Xx Jane
Thanks much for the hugs across the pond (and a continent) and for your advice !
I actually have not yet had blood test for post op CA125, glad you asked about that, had not thought about that. Doc just said to do it in approx 3 months before next appointment but that may be too long ? On the other hand, I think the surgery upsets the CA125 levels so would want to wait long enough so that would not be a factor. I’ll ask about that !
Hi Heidi I was diagnosed with Stage IV low grade serous arising on a background of borderline ovarian 6 yrs ago. At this stage if you are happy with your treatment and your oncologist I would go with your gut instinct. They are right borderline does not respond well to chemo because it is so slow growing. The only thing I am unsure about is your staging as I thought borderline cancer was only ever found on the surface of the ovary I did not realise it could spread outside the ovary. You could try getting in touch with MA Anderson in the states they are the experts in low grade cancers.
Hi there, thank you for connecting ! Glad to hear you seem to be doing quite well. There seem to be differences in how the staging is determined, but borderline can definitely spread outside the ovaries although I understand most of the time it does not...thus my anxiety... Doc originally thought during surgery 2c stage as my uterus had a few (non invasive) implants on the surface, but then said 3C after pathology found (non invasive) implants in the omentum. I will ask for clarification at next appt.
Hello Heidi-CA, I can not speak on behalf of your diagnosis but did want to let you know always trust your intuition, it seems you trust your ONC unquestionably but it is the pathology report that has you a bit concerned/confused. I am sure your doctor would be glad to request a 2nd review welcoming for both of you.
Thank you for reaching out, I see we seem to share the same stage 3C.
I asked my doc about a 2nd opinion on the pathology. He was of course good with that but my insurance will not cover it and it seems to be many thousands of dollars.
Doc did say that only about 1 % of those that have gotten 2nd opinions on gyn cancers where pathology was done by this lab got a result that changed the treatment plan. Sounded like really good odds until it occurred to me that every year only 3 in 100,000 women are diagnosed with borderline ovarian cancer. 🤔 . Nevertheless, Think I will hold off on making any decision about a 2nd opinion at least until I get some CA 125 results. Remind me not to go to Vegas anytime soon 😏.
Welcome and thanks for reaching out. Overall I am doing great.
Recovery from surgery took much longer than I expected and I was fatigued for many months. But 10 months post op I am back walking 2-5 miles most days and tummy is still swollen but can wear my pre op clothes.
And I had hot flashes galore and insomnia. Even at age 53 arghghg. Tried a few things that did not work and was recently prescribed blood pressure meds that to my surprise have almost eliminated all symptoms. Losartan.
CA125 dropped from 375 pre op to 3 and hangs in there between 3 and 5 so far.
Borderline has an excellent prognosis even if advanced stage. I was told 95 % chance it would not recur, and if it did it would most likely come back as borderline again.
There is a really good Facebook group / site specifically for borderline, if you have not found it already...
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