Seromucinous borderline ovarian tumor anyone?

[Donmk]

I am trying to find anyone else with the same diagnosis as me? I have found very little information on this mixed tumor type.

[Yoshbosh]

Hi Donmk, I don't know anything about your type, but have you considered calling the Ovacome helpline for advice? They might have more information for you.

Yosh x

[Donmk in reply to Yoshbosh]

I have only just joined the group so I haven't spoken to many people yet but that sounds like a good idea. I am waiting for my pathology report to be posted to me so I may wait until I have that.

[Yoshbosh in reply to Donmk]

I hope you are able to find out a bit more xx

[Cropcrop]

Hi, welcome. I agree with yosh, ring the ovacome nurses, they will be able to help you. Big hugs Take care ❤xx Jane

[BJ_UK]

Hi, donmk. I had a seromucinous adenocarcinoma, which appeared to have developed from a borderline seromucinous tumour, so I understand your frustration. This type of tumour is very rare, so it is really, really difficult to find any information on them. There are no trials restricted to this type because there just aren't enough of us. I know of only one other person with the same type of tumour as I had who uses this forum, and she will probably introduce herself in due course.

What I can tell you is that what little information I have been able to find suggests that we have a good prognosis. Your prognosis should be even better than mine, as your tumour was borderline, while mine was invasive. Mine was stage 1A - what was yours? My op was in October 2011, and I am still NED and hoping to stay that way!

Best wishes,

Barbara

[Donmk in reply to BJ_UK]

I am only 5weeks post op so still gathering the information. I had one ovary and my omentum removed, I was told the biopsies showed no sign of spreading.

I requested the pathology report to be sent to me so I can read it properly. I think it's vital we have the information ourselves, I only discover my tumor had been spilled because I pushed for the information. I am stage 1, not sure of the letter following the 1.

I have a slightly higher risk of recurrence because of the spilled cells and also because I have stage 4 endometriosis.

Can I ask if you have had any further problems after your surgery? Did you have conservative or completion?

Also, what does NED mean? I haven't picked up the lingo yet lol x

[Mrs_Atko in reply to Donmk]

Hey, NED means 'No Evidence of Disease'.

I had a large borderline mucinous tumour removed from right ovary June last year with a second op in Aug to remove ovary, tube, appendix and biopsies for staging of 1a (details in previous post). It was fertility saving as I'm only 34 (was 33 at the time of both ops), married, no kids. First surgeon bagged the tumour before removal despite original diagnosis suggesting it was just a 'big cyst'. Second surgeon (my Oncologist) said I'd have been staged differently had they not bagged it but I think all cases are different. It's good to know all the info for your own piece of mind. Some people prefer not to know the details.

I was doing ok until Nov (so 3 months after second op) but then started having pains. Had another ultrasound scan and showed a new 'cyst' on remaining ovary by wasn't completely simple due to it being septated. Have been on a 'watch and wait' & am due another scan this Monday with a follow up with Onc on Thursday. Keeping fingers crossed it turns out to be nothing to worry about. The pains and irregular bleeding have continued since scan.

I'm wishing you well in your recovery & a belated welcome to the group!

Jemima xx

[Donmk in reply to Mrs_Atko]

Oh my, I replied to you then I must not have submitted properly as I can't see it tut.

Here goes again....Thanks for the lingo heads up on NED....I am sure I would have figured it out with time.

I am sorry to hear you have concerns, I really hope the appointment goes well. I think we'll always feel concerned from now on....it's a real shock when your health is in the balance. I am trying to look at the follow ups as a gift, I am sure everyone would like to be checked if they had the choice. Unfortunately for us though, the risk and reality of it all is so frightening, it's hard to feel that 'lucky' , that folk tell us we are.

I wish you all the best for your appointment....let us know how you get on x

[Mrs_Atko in reply to Donmk]

Thanks Hun xx

[BJ_UK in reply to Donmk]

I agree, it's good to have as much information as we can get! I have a copy of my path report too, though there is still information that it does not contain that no one has been able to tell me - in particular, what grade my tumour was! I suspect that may be because it was so mixed, but the report did say that it was definitely invasive, and it was not considered necessary for me to have chemo, so it must have been either grade 1 or 2.

It sounds as though you probably had stage 1C1 (the capsule of the ovary broke during surgery).

I had a total abdominal hysterectomy (TAH), bilateral salpingo-oophorectomy (BSO) and omentectomy. NED stands for no evidence of disease.

I haven't had any further problems because of the ovarian cancer, but I have had massive problems because of the operation to cure it.

I had a pre-op epidural during which the anaesthetist managed to breach the dura. Following the operation I had profuse vomiting for about 20 hours (I had never vomited following a general anaesthetic before, despite having had many), difficulty hearing from the day after the op lasting for several weeks (the doctors helpfully said this was nothing to do with the operation and that I should see my GP about it once I got out, despite the fact that my hearing was absolutely fine going into the operating room) and posturally related feelings of illness a few days after the op. I did not have "the worst headache you've ever had", which was the only symptom the anaesthetists had told me to look out for and the only one the staff on the ward would have recognised as arising from the breached dura. Neither of the anaesthetists involved came to check on me after the op, though my surgeon says they should have done.

11 days later, after I had been released from hospital and was at home recovering, I woke up seeing double so badly that I could only get to the loo by crawling there. I rang the ward for advice and was told - guess what - it's nothing to do with the operation, get in touch with your GP. My GP (or rather the out of hours locum, as this happened at the weekend) arranged for me to be seen as an emergency at the hospital where I had had the op, sending me first to the emergency eye clinic with a warning that they might well pass me on to the neurology department. This is indeed what happened - the eye consultant told me that I had a sixth cranial nerve palsy, but that I didn't have any of the usual risk factors for that - they were concerned that I might have had mets to the brain, not that they actually told me that at the time. At that point they knew that I did indeed have cancer, but it was the day before I was supposed to be told that by my surgeon, which the neurology registrar concerned admitted to me later was very awkward for them, as they were not in a position to give me any information regarding the cancer! I was admitted and was actually an inpatient for longer because of the palsy than I was because of the operation that led to it.

After an MRI and lots of discussions between the neurology and ophthalmology departments, they determined that the palsy was the result of decreased intracranial pressure following the breached dura. The other symptoms I mentioned (vomiting, hearing difficulties, posturally related illness) will also have been caused by this, as became obvious once I started looking up papers on sixth cranial nerve palsies following breached duras!

Initially they said that the palsy might well resolve in 6 to 8 weeks - it didn't. I had to keep my right eye masked for 2 and a half months before it resolved to the point where they could give me sufficient correction with prisms to allow me to use both eyes, though not anywhere near as well as normal. During this time I was unable to go out on my own, as I could not safely cross the road.

Over the following months they were gradually able to decrease the strength of the prisms. Two and a bit years after the palsy started, at which point there had been no improvement in the previous year, they referred me to an ophthalmic surgeon, who recommended that I have an operation to rebalance the muscles of my eyes, as further improvement without was extremely unlikely. I had the eye op two and a half years after the cancer op - fortunately it was pretty successful, though my right eye can still take a minute or two to focus properly when I first wake up.

I also suffered nerve damage caused by the hysterectomy, which has left me with singularly little feeling in my vagina.

Sorry if that's a bit too much information, but you did ask!

Are they recommending that you have a second operation for completion? Hope you get away without any of the complications I had!

Barbara

[Donmk in reply to BJ_UK]

Oh my goodness me, you've had a rough time. Probably didn't cross your mind about eye trouble afterwards.

I have not had any major problems after surgery but I am still struggling with pain, bloating and fatigue, but I do have several conditions to deal with in the same area. .... IBS, endometriosis, cysts, tumor and a recurrent prolapse.

They are recommending that I have completion surgery in a few years, they wanted to do it now but I didn't want to unnecessarily go through surgical menopause, hrt is not straightforward with endometriosis.... my endometriosis has literally been controlling my daily life and I have just had major surgery to excise it.

I've had three surgeries in less than 12 months, I've been off work for almost 5 months.

I wish you all the best....I hope your journey gets easier x

[Yoohooitsme]

Hi. I have just started chemotherapy for stage 1c grade 2 seromucinous oc.

I have allowed the NHS to lead me through really as I found google too frightening but I would be interested to know more about this. Not sure if ther is any way of finding a specialist with an interest in it. As I understand it, it is a sub type which has only recently been classified.

[Donmk in reply to Yoohooitsme]

I think the whole subtype issues are fairly recent....that's why there are so many names for the same thing.

Can I ask....you said OC and are having chemo, did your tumor start off as a borderline and progress? Or was it found to be aggressive from the off?

It also appears to me that different oncologists view things differently. My oncologist has told me that a borderline tumor is on the cancer spectrum but not frank cancer. My clinical nurse at the same place however told me borderlines are not cancer. I've googled a lot and Ovacome says it's a form of cancer so I'll stick with my oncologist....but very confusing!

I hope your treatment goes well, it's good it's been found at stage 1......look for the rainbows x

[Yoohooitsme in reply to Donmk]

I can't offer a very detailed answer as I found each apt brought a new picture so each time I prepared a set of questions to be floored by a new scenario. My seromucinous was labelled a stage one cancer and they do not know if it was a borderline tumour which progressed or not.

Initially they said grade one so no chemo then they rechecked and decided grade two so chemo has been started.

[Donmk in reply to Yoohooitsme]

I have read several stories where people have had their tumors upgraded....I am not sure how that happens, I mean, don't they know the first time they look?

I also find my appointments don't go to plan....I write down questions but leave having discussed other things. I think that's why we get assigned a keyworker, I always ring back up after my appointment! They are also pretty vague in appointments I find, like they don't want to give you all the information. Perhaps they're trained that way? But I want to know every detail.....I want to be making informed decisions.

I hope chemo goes well for you...rest and rest some more x

[Mrs_Atko]

You might find it helpful to join the Borderline Ovarian Cancer/Tumour FaceBook group...specifically for us 'borderlines' and full of info you might find useful xx

[Donmk in reply to Mrs_Atko]

I joined the Facebook group the other day, following a link from here x

[feelingblessedinohio]

Hi, Donmk. I was actually diagnosed with this earlier this month after having my right ovary and both fallopian tubes removed due to what they thought was a 9 cm complex cyst, which pathology came back as borderline seromucinous ovarian tumor. My gyn-onc said I was very lucky. This type of tumor is very rare but the prognosis is excellent. It is almost always stage 1a (which mine was) and surgery is curative 98% of the time. It is also referred to as a borderline mucinous endocervical ovarian tumor and borderline mullerian ovarian tumor, so you might try using those terms when searching for info, but unfortunately because it is so rare, there is not much information on it. (I think he said only around 125 women in US are diagnosed with it yearly). Good luck

[Donmk in reply to feelingblessedinohio]

Hi, thanks for the extra information. I have done a lot of research. The prognosis is very good but my tumor was openly drained so that raises the risk of recurrence for me. I also kept one ovary so I am just hoping for the best at my follow up scans. I have only just joined this forum and it's been very supportive but also quite frightening at the same time.

I am in a bit of a down phase right now. I have honestly been super positivemost of this journey but am just finding it difficult to process the fact that cancer has come into my life and won't ever leave now. I am doing all the right things outwardly, trying to get fit again etc. I think I am going to fake it till I make it! Usually works x

May I ask of you've been having anxiety too? It's sounds like we are roughly at the same point x

[feelingblessedinohio in reply to Donmk]

Yes, lots of anxiety, but after speaking with my gyne-onc I feel so much better about my circumstances. Yes, cancer sucks, but I guess if I had to have one this one was a good one to get. I know this will always be part of my life now and every followup appointment (I, too, kept an ovary) for the rest of my life will remind me of it, but I am trying to not let the cancer define or limit me (I will not be getting the teal ribbon for ovarian cancer tattooed anywhere, lol). I am actually going back to the gym today for the first time in 3 months and looking forward to getting back into my normal routine. If your anxiety becomes overwhelming I would suggest getting a therapist, I have one and he has been so reassuring throughout all of this, sometimes just letting it all out is very helpful.

[Donmk in reply to feelingblessedinohio]

My friends laughed when I said I've got 'the best type of tumor' Lol.

I will get help if I feel the anxiety gets too much but I think I can work through it. I am busy being positive whenever I talk to people in real life but on here, I felt the freedom to express some of my darker thoughts without worrying.

Today I had my first big sob but I very quickly pushed it to the side and did something about it. I never wallow.... but I think I haven't allowed myself to feel the sadness since it happened. I think this week I need to actually feel it....just as long as I get at least one thing done for the day!

I too am trying exercise for the first time in a while! I have had two major surgeries in the last couple of months so I am starting with swimming.

We just have to get in with life.... it's really nice to talk to you .... sometimes this ole Internet is pretty good x

[feelingblessedinohio in reply to Donmk]

Hi! I had a followup appointment with my gyn onc yesterday. I had CT chest, abdomen, and pelvis and all were cancer free. We are doing 3-month followups to keep a close on eye things. I wanted to let you know, though, he is sending me for genetic testing, specifically for a KRAS-variant mutation. Almost 2/3 of woman with our kind of tumor/cancer will be positive for it, and unfortunately that makes us more prone to other types of cancers. He said if I am positive, there is no way to fix it but we would be very diligent in followup and know what other types of cancers to be on the look out for so we can catch them before they become aggressive. Hope all is going well for you.

[Donmk in reply to feelingblessedinohio]

Excellent news! I have not heard of the genetic mutation....I may mention it at my next appointment. It sounds like you're in good hands.

I went swimming like I said, which I thought was a great thing to do but I ended up at the doctors with increased pain and I've been having a lot of back pain. The doctor said I am rushing recovery and doing too much, she told me to forget swimming for a while and get a back massage.

So...that's me told lol.

I'm glad you got positive news.....I hope you are celebrating x

[feelingblessedinohio in reply to Donmk]

Sorry to hear your return to exercise didn't go so well but you will get there. I know the healing process is going way too slow for me, too. Summer is coming up and I either need to lose the weight I put on since this started (13 lbs, yuck) or buy new clothes lol. Massage idea sounds wonderful.

[Donmk in reply to feelingblessedinohio]

I have put on 11lbs! I am mostly wearing leggings and joggers...I have had to buy some new clothes for my return to work....I decided to go for loose tops and elasticated waists in my usual size. I hope once I am more active the extra body luggage will go! X

[Maus123]

I don't match your diagnosis exactly either but I am one of the borderliners (albeit serous, and with some microinvasion on top). Keep your hopes up!

[Donmk in reply to Maus123]

Thanks Maus123. I am early days I guess . Just working through the shock of it all!

I hope you are well yourself? X