Highly suspicious bilateral ovarian masses - head in a spin

[Scarycanary]

Hello all,

I’m new here, looking to make initial contact and open to any useful tips or advice. I’m 51, post-menopausal and have had a whirlwind month of blood tests, ultrasound, MRI and CT scan, which has resulted in findings of highly suspicious bilateral ovarian masses and planned surgery (to remove ovaries, tubes and uterus) in a few weeks. Having initially been told that these masses may be secondary cancers from a primary elsewhere, I received positive news last week to say that there is no sign of any other primaries elsewhere and therefore these are being treated as primary OC (although obviously not confirmed until post-op histology has taken place). Fortunately the scans seem to show the masses to be confined to the ovaries at this stage with no obvious spread. I was strangely relieved to hear that this is not a secondary cancer, but my initial relief is now wearing off and my head is spinning with possibilities and fears. I am also worried about how to tell my aging parents (my dad had major heart surgery last week and my mum is already a nervous wreck). I see the consultant in 10 days and have a list of questions about the surgery and possible diagnoses and the way forward. Does anyone have any advice at this stage, particularly any key questions to ask the consultant, how to tell my parents and how to get my head around the whole thing in general. Thank you x

[charlie12]

Hi Scarycanary

Welcome ....so sorry that you are in this predicament.

I had a borderline ovarian tumour removed in early 2010. It’s a very long story but I was admitted with query stage 4 and after numerous procedures I was assured that my mass was a simple cyst. Long afterwards it transpired that it was a borderline tumour... a non-invasive OvCA, this was a massive shock. I have been fine , mostly, since with no sign of anything nasty. What I am trying to say is that while this waiting is absolute torture, it is better that you are being properly assessed and being given accurate information. The alternative is a lot worse.

I have recently been referred for query breast cancer and like you say the waiting was absolutely awful. The 10 days leading up to the appointment ...from Sunday until the Wednesday week were the worst I can remember for a long long time. You might find staying as busy as you possibly can , lots of exercise and healthy treats will help. Time with other people is brill and avoid or delay difficult situations between now and then. I remember clearly how I felt 10 days before the appointment , felt that it would last forever and ever and ever. But it went by really quickly and what I have is benign , despite having some alarm symptoms.

Fingers crossed that will be you too.

Sorry if the above is simplistic and not much help ,but my heart truly goes out to you.

Lové and hugs xxxx

[Scarycanary in reply to charlie12]

Thank you for your reply x

[Loverosie in reply to charlie12]

Hi charlie12, i also had a borderline 1c in 2016, i was still under follow up every four weeks when i was found to have stage 4. I am still confused and somewhat angry that i managed to become incurable whilst under follow up! In the 3 years I was never scanned and my CA125 remained low 7-10 so I guess I am saying be mindful that it can happen and watch for symptoms. Jane x

[n377y in reply to Loverosie]

Hi Loverosie, just reading your post and really feel for you. This most have been such a shock for you. Did you have your original tumor removed? X

[Loverosie in reply to n377y]

Hi, yes, i had radical surgery including appendix and omentum with some lymph nodes. They said the chances of it coming back were negligible however I had three great years completely oblivious lol! Good luck xxx

[Roytonlass in reply to Loverosie]

I'm so so sorry to hear this. I hope do well by you going forward and give you some quality of life xxx

[Loverosie in reply to Roytonlass]

Thanks Roytonlass, i grew up in royton, born in Shaw but live Stockport now. I'm doing well thanks, just miss my job, was a staff nurse on medical admissions was in Stockport. Even had my scan for this recurrence whilst i was on shift lol! Best of luck and warmest regards to you x

[Donmk in reply to Loverosie]

Hi there, sorry you have a recurrence. I was told stage 1 means very unlikely to recur... Like you it seems. How did they discover your recurrence if they were not scanning you? I'm stage 1a borderline with tumour spillage. Has yours now crossed over to typical OC from borderline?

Also... Are you in the Facebook group for this specific tumor type? It's very informative and full of lovely ladies x

How are you getting on?

[Loverosie in reply to Donmk]

Hi, i became symptomatic with abdominal pain so repeated CA125 and it was 39 so scanned me and it was on my peritoneal wall and in my right groin lymph node. I would push for a scan because if I'd had one it would have saved my life. My prognosis is 3 years and I've had 1 lol! But I'm not doing the prognosis thing, I'm aiming for 10 minimum. No I'm not on FB for our particular tumour what do I search for? And yes, it's high grade serious now. Love Jane

[Donmk in reply to Loverosie]

I'm so sorry to hear that Jane. That's completely shocking for stage 1. The Facebook page is for borderline diagnosis.... I think you just search for that really... Its called Borderline Ovarian cancer/tumours. The ladies will be supportive if you need that too.

Was your scan a transvaginal ultrasound? That's what my oncologist says is the best way to detect a recurrence....

Also, I'm surprised yours has crossed over to high grade. Most ladies in the fb group report a cross to low grade not high grade. I wonder if they missed something early on for you. X

[Loverosie in reply to Donmk]

I just feel something went very wrong, my cyct was 29cms in diameter so I put it too them that they didn't take enough samples but they say they did! Also it ruptured on removal, well it was bigger than a football lol! What ever happened they are not willing to share. I didn't have any scans during my follow up until it was too late when i had a CT. I will join the group, thanks very much for that. It's really difficult in regards what happened, it's been a year now since my diagnosis of recurrence and I'm trying to accept what has happened but part of me really needs to know the truth but i don't want it to take over what i have left. I'm very focused on enjoying what is left. Also I'm a nhs nurse so I don't like the thought of legal action, i reckon a solicitor could find out the truth, it's knowing what questions to ask. The other thing is I'm still being treated at Christies where i had the original surgery so i dont want to be a trouble maker. Xxx

[Donmk in reply to Loverosie]

You are able to request copies of all your medical notes, including the surgery notes. I have all of mine but I did have to ask. They hadn't told me they had openly drained my tumor until I questioned them about my notes. They did think it was just a cyst though but still. They tend to say very little.

I understand why you don't want to make a fuss but you are entitled to know and that should not be a problem for them either. Do what ever you feel is best but do what you want not what you think you ought to do for their sake.

I hope you are well supported x

[charlie12 in reply to Loverosie]

Oh Loverosie I’m not surprised that you are confused. Even scans don’t pick up everything. Could you not ask PALs to help you get some answers ?

Hugs xxx

[Loverosie in reply to charlie12]

I did, i wrote them a long letter but no answers on the reply. I haven't replied to there reply yet. I think it was staged wrong. I would like to know what percentage of borderline recur. My family are all very angry at what has happened but as i say nothing will change my situation so I have to accept it in order to find peace in my heart and enjoy my life. I'm very greatful for all of your reply and kind words xxx

[Lyndy]

Hello

Sorry you find yourself here but you will find lots of support and useful information here.

I would suggest that you concentrate on yourself and your needs until you have something definite to tell your parents.

Focus on prep for your op and then recovery. For example If you are staying in hospital ear plugs are a must (not glamorous but sooo helpful).

I think that you will probably have to go with it all until your results meeting with oncology: that’s the time for questions xxx

[Scarycanary in reply to Lyndy]

Thanks Lyndy x

[Hidden in reply to Scarycanary]

Totally ear plugs and one of those eye mask for sleeping. Hospital curtains are usually pants. Take something you can listen to books or podcasts on, I found it too hard to focus on anything else.

I would also just go with the flow until after the op. My surgeon visited me the next day and told me what they had found. They did something called a frozen section during the op, they take a sample send it to the lab then act on the results. I’m 3c high grade serous so there was quite a lot to remove.

Wishing you all the very best. X

[Hopefulgal1]

I just wanted to say this is an excellent forum - full of intelligent lovely women who often advise and help and you have made a great start by posting here. I agree with comments below - try and concentrate on yourself and not worry too much about your parents right now ( easier said..!) but I have found my aging dad has dealt with my predicament in his own way and has surprised me.

Just take deep breaths try meditating ( helped me...) and get through the surgery. If it hasn’t spread you could be stage 1/2 and this would be so much better than us 3/ 4 ... but to be honest everyone is so different in how this progresses. I wish you good healing from the op and hope everything goes as smoothly as possible. Then you will be able to ask your oncologist all those questions ...good luck x

[Scarycanary in reply to Hopefulgal1]

Thank you x

[Clar0805]

Hi I’m Clare. I was diagnosed stage 3 last July and been through chemo and surgery in October. I’m now on Oliparib a maintenance drug. I agree with other comments .. I think concentrate on yourself and I try not to look too far ahead ( easier said than done) but if you can concentrate on one appointment or one procedure at a time it helps and I felt like there was too much time in between to think so I found getting out walking in nature helped me and Reiki. It’s a case of staying calm and listening to the doctors. It’s much easier when you know what you’re dealing with and it’s not all doom and gloom as I’m learning lots of ladies do very well. This forum is an excellent place for information and where you’ll feel less alone because ladies here really understand what you’re going through . Take care x

[Scarycanary in reply to Clar0805]

Thank you

[Neona]

If I could go back and do it again I would not have told my parents how serious it was - if it turns out to be serious. If OC is confined to the ovaries a cure is possible .The waiting for results is dreadful but good that the doctors are dealing with it. Please let us know how you get on.

[Scarycanary in reply to Neona]

Thank you

[Trathi]

Hi Scarycanary, welcome to the site, you can ask anything here and we can only go by our experiences.

You have had an awful time and this time is probably the worst as you have lots of questions, and seeing anyone takes time for results, appointments and everything.

It’s a complete shock when theyfirst tell you, I have to say my gynaeoncologist said he doesn’t believe in caLying it Cancer until he has opened you up and has a good look. This was after two people clearly telling me I had oc.

I suspect your first thing is finding out what stage they think your cancer is, this will obviously be relevant for your treatment. Nothing moves fast and I suspect they will wait for the results from the samples.

I would possibly hold back from telling your dad until you know exactly what you are dealing with. You could take your mum with you to your appointment if you feel she could deal with it, or alternatively wait until you tell your dad if you think she will not cope.

There is a lot to take in when you go to your appointment so do take someone with you. Follow up care and chemo appears to differ slightly from area to area. The surgery will probably be straight forward. I signed a consent form for them to take whatever looked as though it was affected. They took my ovaries, part of my bowel and tumours from my diaphragm, ( previously had hysterectomy 30 years previous). I recovered quite quickly and then began chemo 5 weeks later (the length of time it takes to start chemo etc varies as well).

It’s the time frames you need to ask about, 1) when will your surgery be, w) what are they going to do, 3) how long will it take to get results 4) will the results be able to say if further treatment is required.

OC is a tricky little disease which can spread even when you have had everything removed. Use the specialist nurse as a source of information.

We are all here for support and for having a good old moan about this damn disease.

I used to take a list of questions then not go through it so would stop before I left the room to tick off everything I had on it.

Forget your parents for now, tell them when you know exactly what you are dealing with.

Sending you lots of love 💕 hugs 🤗 and positive thoughts your way xx

Tracy xx

[Scarycanary in reply to Trathi]

Thank you x

[bamboo89]

Your initial feeling of relief that there isn't a primary elsewhere was entirely appropriate, because that means it appears to be confined to the pelvic area, and from the scans, perhaps just the ovaries. But its not surprising you then felt the way you do, because, yes, it might be confined to the pelvic area, but its still probably cancer, not something anyone wants to hear. I have no doubt you will be whipped in for the surgery within fairly short order after seeing the consultant (who should be a gynaecological oncology surgeon). He/she will likely tell you they will know more after the surgery - scans don't always show everything,especially anything under 1cm or any little spots, so their being able to physically see the area during surgery is essential. It may be that you have a full debulking, sometimes called cyto reductive surgery (most of us have) which means they will take whatever they can if it looks suspicious (in particular, the omentum, something I'd never heard of before getting OC) - this is done in an attempt to get out all of it if they can, but they will talk to you about that at your appointment. It sounds horribly daunting when they do tell you about it, but try not to worry too much, and remember that most of us have had it done, so its a fairly common surgery. And use the Macmillan nurses - they are a useful source of help and information and are often attached to the hospital where you have your surgery.

You don't say whether you have a supportive partner, but it would be helpful to have someone supportive around; taking someone along to your appointment who may remember the things that were said that you don't can be useful - a friend or friends, sister, husband, whatever. Also so that when you return home after surgery you have someone around to help out; for instance, I couldn't wash and dry myself below the knees for the first 8 days after getting home, and had to employ a carer to come and do that for me for an hour each morning when my sister wasn't around, as well as running the hoover over or whatever, so you will need some assistance with personal care as well as any household tasks. Even taking the rubbish out wasn't possible for some weeks...along with driving and carrying anything other than a paper bag!

I do see that it's difficult to decide what to tell your parents at this stage, given the troubles they've both had recently; at the top of the list of things I have found the most difficult to do in the whole of my life was to tell my son that I had this problem. It would have been difficult anyway, but it was compounded by the fact his father had committed suicide around 10 months before - if I could have avoided telling him, frankly, I would have done, but he was living nearby in London at the time, contact was very frequent, and I knew I couldn't just disappear for ten days and then not be functioning normally for some weeks without his noticing, so it had to be done. Those who truly love us and have already suffered some sort of blow or loss are the most difficult to give this news to, and although he was very distressed, he came to all my appointments and later said, when I asked how he was coping, 'I wish it wasn't happening, but its a lot better than what Dad did..' so although it was very, very hard, it seemed I had done the right thing in telling him. Life is the very devil sometimes; with what's happened to your parents and now you, It never rains but it pours, does it... whether, how and when you tell them only you can decide. If you're worried about their reaction from a health point of view, might it be possible to just say you need a hysterectomy for a somewhat more innocuous reason, for instance, rather than telling the whole truth at this stage...

One fairly minor piece of advice springs to mind - take a small pot of vaseline into hospital with you if you're going to be on a morphine pump after the surgery, as most of us are - no one thought to tell me that beforehand, so I spent 4 days not being able to talk when asked a question by the medical staff, because my teeth would stick to my lips - an application of vaseline to the teeth or lips helps enormously with that.

I am sorry you find yourself in this position, but you will get through it - surgery is obviously the first stage. Once the pathology report is available, you will likely be passed along to Oncology for further treatment, and that treatment will be dependent on what it is they've identified. This site is full of useful information and advice, so at least you've found this to assist you through the next few months. I wish you well

Miriam

[Scarycanary in reply to bamboo89]

Thanks Miriam. X

[Small_bump]

I'm so sorry you find yourself in this situation, it's a horrible place to be. I am still in the process of diagnosis and the not knowing is driving me slightly insane. I haven't told my parents how serious it is, I just can't do it to them yet. I also haven't told my kids anything is wrong, they are young (eldest is 11) and I don't want to scare them or for them to be worried until I absolutely have to.

I hope you don't have to wait too long to have a definitive diagnosis, I think I will feel much better once I know what the plan is and how I can deal with it.

Sending you lots of love, Emma xx

[Scarycanary in reply to Small_bump]

Thanks Emma. I hope your diagnosis comes quickly and that it is not as bad as you fear. Sending encouragement. X

[Natsmb]

So sorry you have to receive that news. On the one hand, it's positive that it is not secondary cancer but I can totally relate to the concerns you have. Wow! You are definitely going through a lot right now. I don't have advice about how to tell family- it's such a sensitive situation and different with each person. I've usually waited until I have all the test results and plan of treatment because my experience is that as soon as i tell somebody what I expect to hear it turns out I'm way off- thankfully, it's been generally more positive than I've been lead to expect.

As for questions, I personally asked for hand stitched closure not staples because I was told the scaring would be less so you may want to ask about that. I heaped up fast and with minimal scarring

It's a pretty big surgery and if you haven't already, just make sure you have plenty of help once you get home. Not to be crude, but one of the biggest issues I had after surgery was having a bowel movement. All the hospital gave me was stool softener and I had to ask the pharmacist and some friends for suggestions about dealing with that. If you do end up with that being an issue get on it right away.

Also, if you are staying in the hospital, which I cannot imagine you not having to do for at least 3 days, all about where they will put the IV. It was so frustrating that they put the IV in the crook of my arm. I had to lay down with my arm straight for 5 days and if I used my arm the machine would go off waking me up. That was pretty frustrating and not necessary so maybe, all about that just to make your stay a little smoother.

Some of the questions I didn't know to ask would be:

What are you using to measure any progress after surgery? I didn't know what my nurse was talking about when she said my numbers weren't going down and it turned out that my surgery wasn't effective in treating the cancer. I went from stage 2 to stage 4 in three months and I was not expecting it because I didn't quite understand what they were referring to when they send numbers we're going up. I know they were checking with other proteins and things too and they mentioned those numbers but honestly I didn't know what they meant so it would be worth it for you to ask what they will be looking at to measure the progress and what each number means and how they look at it as a whole.

Now, I always ask what my numbers are just too keep myself well aware so that I'm not caught off guard as much as I was back then.

I'm assuming they're not going to tell you if you have to go through chemo or radiation or anything until they do the surgery and find out how far it's spread?

[Scarycanary]

Thank you x