Hysterectomy and borderline ovarian tumours

I recently found out I had a huge ovarian cyst which measured 24x27cm I ended up having to have the cyst removed along with my right ovary and both fallopian tubes, this was done by laparotomy as the cyst was too large for a lapascopy, I am 6 weeks post operation which has been painful as I got stitch abscesses.I went to what I thought was my 6 week follow on appointment (2 days ago)with my surgeon only to be told that the biopsies on the cyst revealed that I had an encased borderline tumour within it. IT doesnt end there though!!!! My surgeon went on to tell me that while I was in theatre he noticed what at the time he thought was a cyst on my remaining left ovary but he didn't remove it as he didn't think it was going to be anything other than a cyst and it was beneficial to leave my ovary in as I am only 35 and didn't want my menopause. I've now been told this tumour could be a borderline tumour as well and that I have to now go back in for surgery to have a total hysterectomy. I'm devastated to be honest as I still haven't recovered from my first operation plus I'm scared and confused as to what it all means plus I've read that sometimes you have to have your appendix out as well? . Any help and advice would be welcome

[Heidi-CA]

Hi Carly,

I also am a new member and was recently diagnosed with borderline serous tumors stage 3C - had grapefruit sized tumor on both ovaries - tumors were benign cysts with sold portions that were borderline.

So sorry to hear about the need for a 2nd surgery and the menopause. Arghghg. I had a total abdominal hysterectomy and removal of both ovaries on Sept. 25, 2017 but all in one surgery and minimal menopause issues as I am 53 yrs old. There is a site called HysterSisters that is very helpful in planning for and recovering from a hysterectomy.

You might consider asking your surgeon whether any (preliminary) pathology was done during the surgery and what the result was - maybe this was just not possible where you had your surgery. I had this done and both tumors came back “at least borderline”. So at that point they knew it had to be staged and it all had to come out, including my omentum (fatty layer of tissue hanging over the abdominal and pelvic areas) and 34 lymph nodes which fortunately all were clear.

I have read on line that the appendix is sometimes removed if the borderline tumor is a muscious, as opposed to serous or another rare type. Some of the muscious tumors actually originate in the appendix and migrate to the ovaries. I would ask your doc if they have determined this for sure. Mine were serous type.

I would encourage you to research this on the web etc. and learn as much as you can - information is power.

In general, borderline tumors have an excellent prognosis - it sure could have turned out better but try to look on the bright side (very hard to do right now probably) that it also could have been much much worse.

Hugs

Heidi

[charlie12]

Hi there

I'm so sorry that this happened to you. I found out a the follow up , nine weeks after the op, that my monster was a borderline tumour. This is a big shock to the system and you will need time to get over it.

Generally full I.e. Completion surgery is only recommended if you have finished having kids , but he is probably saying this because there is another cyst there , it must be hard for you to come to terms with him not removing it.

A second operation is rough but doable , you will have all the advantages if not having any more female issues to deal with , these are so much fun in your 40s ...not and you will have the risk of another female cancer virtually eliminates. I had some nasties starting in my endometrium , so getting this out was a very very good thing. This will be hard at the time , but it's the very best to almost eliminate anything coming back.

Ward staff take very good care of people on return visits . Mine was 8 years ago next year, it is doable and I am mostly fine now , was 47 at the time. I have been on low dose HRT since and intend staying on it for as long as possible.

There is a FB page for people borderline tumours , which is very very informative and helpful. You might want to consider joining.

Hugs xxx

[Hidden]

Thankyou for your replies, I feel really silly at the moment because I didn't ask any questions, all I could think about was going home, my mind went blank. Tbh I haven't asked the questions I should have from day 1, it's just it's been that quick from original consultation to now at 6 weeks post op (about 10 wks in total) can you advice me what I should be asking etc as I can't think straight at moment, also I know this sounds really bad but me and my family have had a very bad year this year so we booked a family holiday to go to Lanzarote for Christmas, this became my thing to look forward to, but obviously with my second operation looming we could end up having to cancel, I can't bare to tell my 6yr old that he can't go, I know my priorities seem a bit off balance but would you arrange your operation after your holiday or cancel your holiday. Sorry if I seem a bit materialistic but I don't know what to do or think at minute xx

[Sunfleury-UK in reply to Hidden]

Hi Karley... please dont feel silly, I think all of us know what its like to have your world turned completely upside down so unexpectedly and its incredibly difficult to ty to make sense of so many new and deeply challenging things. As its a Friday afternoon, I would really encourage you to give one of the main charities a call- Ovacome have an excellent support line with lots of experience and insight into what you might want to know. Similarly both The Eve Appeal and Target Ovarian Cancer have phone support from specialist nurses.... They are all available Mon-Fri so it might be worth giving them a call today.

I also found my GP was incredibly supportive and really helpful when i needed to understand better what decisions needed to be made.

Ovacome have a great factsheet on their website specifically about borderline tumours.

There is an excellent booklet specifically for younger women which was produced by these charities and women who have gone through similar things to what youre dealing with now... youll find a link to it in the pinned section here and also on the charities' websites and you can also order a paper copy. There is also a general guide from TOC called' What Next?' which is for all women newly diagnosed... getting good quality information can make all the difference so rather than googling, the main charities resources are a great place to start.

I had a 'cyst' removed just over 5 years ago- it was initially thought to be borderline mucinous (this is the name of the sub-type) and then found to have invasive cancer cells. I had a few discussions with my surgeon and CNS to decide on the options, including a very fast referral to a fertility consultant before having a big op with hysterectomy. I did have my appendix out as is the norm with mucinous types but it was completely unnoticed!

My best advice is to try to do this one step at a time... You've already had a tough time with your op and i do hope that you are in less pain and healing from it?

Ask any of the questions you have here as youll find lots of experiential knowledge and a huge amount of care and support... best wishes, Sx

[antifer1234 in reply to Hidden]

Oh poor you. It is difficult to know what to ask as you have been thrown into a whole new world. At first I didn't want to know anything but as time goes on I find I am more interested.

As far as the holiday is concerned you are not being materialistic just trying to think about doing something in your comfort zone!!

I find not knowing what is happening to you is very stressful and perhaps we should all realise that we need to be fully informed.

I got myself all lined up for a massive debulking operation, 3 surgeons for 3 different areas. My onc said NO. So all that worrying for nothing, now I worry cause I didn't have it!!

I really feel sorry for you but fully understand how you feel. So does everyone else on here so try not to feel alone we are here to listen and help you. Thinking about you, big hugs Anthea.

[Hidden]

Hi Karley4. Everyone on this site remembers being totally stunned when told of the diagnosis and the operation soon to happen. Brain just won't work. I think it's shock trying to protect you from thinking too deeply. It takes a while to get over that.

My tumour was described as "bigger than a baby's head". My surgeon told me all the bits he was going to remove during the op (including appendix & lymph nodes). So I thought I was prepared for it. After, he told me what he'd removed - totally different from what he'd told me prior to the op (appendix & lymph nodes still in situ). The biggest bombshell was that I had to go back in for a similar op 3 months after to complete the job. I thought at the time that he must have no idea of what he was doing. BUT that was almost 6 years ago. I don't know exactly what a laparotomy is but I'm thinking it must be a key-hole surgery. Mine was a boob to pube. If they use the same place to open you up the 2nd time, it doesn't hurt nearly as much as the first time - scar tissue isn't as sensitive. At the time of my 2nd op, my surgeon also cut me just below the rib cage to install a port for administering chemo (he hadn't told me about that either) and the much smaller cut for the port was more painful than the repeat boob to pube! I think they don't fully know what they'll find until they can actually have a look around in there. I think we just have to trust their judgement.

Regarding questions - good advice above. When you think of something you want to know, jot it down. Also, it's a good idea to have someone with you during appointments if your brain is blank.

Good luck. Pauline.

[Jacqui1737]

This is similar to what I am going through atm..my head is fried thinking because ovary and 2 tubes removed do I really need more surgery if chances are it hadn't spread.serous borderline tumour stage 1. Had 1st surgery 7 weeks ago and rest is planned mid Jan. All other answers so helpful but can't find page on fb for borderline. This 2 years ago how has your recovery been and positives and negatives.im stressing as sex life already taken nosedive and read so many horror stories of bladder problems and surgical menopause not to mention the worry of heart brain and bones health long term