Borderline Serous Ovarian Tumor - Scared

[Magalivazquez]

Hi all I recently found this blog hoping to get more emotional support and positive vibes as right now i'm in a sort of depressed state .

I had a wedge resection surgery on July 18th Just this past monday they informed me that pathology results came back and they showed positive for a borderline serous tumor on my left ovary.

The wedge resection surgery was done to shrink the size of my ovaries as they were enlarged . I had had many many ultrasounds done prior to surgery and an exploratory lap and neither my OBGY/Surgeon or my previous gynos ever thought anything of the cysts in my ovaries as I was normally diagnosed as PCOS

My first surgery laparoscopy was done in MArch and they found endometriosis, peritubal cysts and of course these enlarged ovaries.

The biopsy results showed that only the portion taken out of my left ovary was positive. I also had peritubal cysts removed and these were normal. My right ovary resection is also normal. My doc said there was no indication of malignancy just by looking at the ovary and she said even when she opened it there was no color changes or anything that could indicate this diagnosis.

I am scared to say the least , worried and on Monday when I got the call I was freaking out. Now that I've done my research I know that these tumors are different it has helped calm me down but I feel bad because I feel like I amy be making a huge deal when other woman have it much much worse.

Im just so scared , the biopsy was from by Surgeon/Gyno and I will be referred to an oncologist but I do not have an appointment yet. Im just so scared that they may classify it differently or give me a worse result.

The reason I had this surgery was to increase my chances at conceiving. I am 27 and have never been pregnant and been trying for 3 yrs. and I may be selfish or stupid now but Im so scared they will tell me to take everything out.

Its hard to tell people because I dont even know what exaclty it is not sure how big the tumor . OVer the past 3 days I've been reading so much online some good some bad stories I haven't really been able to sleep and I lost 6 lbs . So mostly im looking for emotional support.

And Im truly sorry and I dont mean in any way to be inconsiderate of those ladies that have had a much worse diagnosis. I really admire that strength because as soon as I heard the word tumor I freaked out.

Thank you for reading this and look forward to meeting anyone that feels the same way so we can give each other good vibes.

[Jen85]

Hi there. Can I ask if you are in the UK? I have been in a very similar situation and also received a borderline diagnosis. I'm 33 and have had fertility sparing surgery. I was told that borderline tumours need to be treated so that they don't develop into full cancer, but that surgery is usually the only treatment needed. They are also unlikely to reoccur. That said, mine did. I fell pregnant but sadly miscarried and at my miscarriage scan I was told a cyst had developed and it had a blood supply. I had surgery to remove the cyst and was told it contained borderline and cancerous cells. Luckily it was caught very early so I didn't need chemo.

At my first oncology appointment I was told that a full hysterectomy is preference, but because of my age we worked out some safe alternatives which would keep me healthy, and fertile. I felt comfortable with my decision but as soon as the borderline cyst returned with cancerous cells I felt I was ready to allow them to take everything. It really does shake you up. As my oncologist said 'dead women can't have children'. Blunt but very true! Whilst you are a borderline patient I think you can feel sure you still have some options regarding your fertility. For peace of mind, consider having some eggs and embryos frozen so if you do have to have your ovaries removed (hopefully not!), you still have options 😊

There are a couple of us on this site who are a bit younger with experience of borderline and it's a good place for advice and support. I feel like I know some people so well even though I've never met them!

[Magalivazquez in reply to Jen85]

Hi Jen, Thank you ! How much timed passed from your first visit to when you got pregnant ? (recurrence)

I am truly sorry about your miscarriage. I cannot imagine the emotional pain along with your diagnosis of the recurrence .

I am a little worried that my oncologist will have different results after they look at the pathology test. Maybe I've googled too much and that is not good , I just have read some stories were there were told its borderline and turns out to be cancer (invasive).

That is true , it terrifies me because I always felt like If I never got pregnant I would always have that "hope" but if everything gets removed that hope would be completely killed. Of course I would rather kill my hope than myself but nevertheless its hard and such a major decision. I know my life is important and adoption is always an option . But I am also worried of the effects of not having a womb and going through menopause in my late 20s. How are you coping with that? Have you felt like it has changed you in anyway ..im sorry I dont been to be nosy but would like to hear personal experiences.

I'd rather think the worst and get better news. It ha helped to read some of the stories here , I had never heard about these tumors and I am finding out so much information about them now

[Jen85 in reply to Magalivazquez]

No problem 😊 I still have my womb so I can still carry a child, although I will need ivf. I've miscarried twice and both were ivf pregnancies courtesy of this lovely disease. My reoccurance was about 18months after diagnosis. We are deciding if we would like to try again with our frozen embryos. Haven't decided yet. It's been a very stressful and emotional 2 years!

The menopause thing I've struggled with, not physically, just mentally. Hard to process. I always thought if we stopped trying for a family it would just happen. But now of course it can't. Otherwise, the hrt drugs work fine and I don't feel any different. I do go to clinic though where they take a very holistic view and will help me over the next 20 year's or so until it will have happened naturally.

I was dreading the surgery but to be honest I'm glad I've had it. Now I don't have reoccurance and scans hanging over my head. I feel more free 😄

[Magalivazquez in reply to Jen85]

Hello, last week it was emotionally draining im doing better today thinking positive. My first visit with the oncologist is this Wednesday . Im not sure what to expect but I've thought of the worst outcome ,so that anything he says will be less drastic than what I was expecting.

Thank you so much for the support . It's amazing to have so many people go thru this and connect when you feel so alone.

[Jen85 in reply to Magalivazquez]

Your welcome 😊 think positive and let us know how you get on. X

[Magalivazquez in reply to Jen85]

And no, im in TX , US

[Donmk]

Hello lovely, so sorry you've found yourself here but happy that you have at the same time.

Everything you have said sounds like a completely normal reaction to what is a shocking and confusing diagnosis.

I have a similar diagnosis but my type is seromucinous, which is even more rare and confusing. Unfortunately, the confusion is part of this type of tumour. Some medical professionals disagree on their classification, which leads to different explanations and further confusion. I felt all over the place when I was first diagnosed, and when I found this group, like you felt guilty because my prognosis was better than some ladies on here. But, just because someone else has it worse doesn't mean your pain and worry should be less. The ladies in this group offer nothing but kind words and wisdom.

My diagnosis was also a total shock after surgery for severe endometriosis. I think it's a common story with this type. They seem to appear less 'worrisome' on scans and in my case, even visually close up during surgery. My endometriosis consultant was so shocked.

I am actually less than a week out of surgery myself to remove my remaining failed ovary after 4 abnormalities were identified on the scan. I am waiting for the pathology to come back. My original diagnosis was 18months ago and it's been a rollercoaster! How you are feeling will be totally recognisable by all in this group.

There is a Facebook group specifically for people with a borderline diagnosis. Do look it up because you will find a whole wealth of helpful information in the files section, but also the members are in the exact same diagnosis boat so you won't feel guilty about any of your feelings x

[Magalivazquez in reply to Donmk]

Hi !Are you still waiting on your pathology reports? Unfortunately I dont have a facebook , I dont have social media . Sort of fortunately too though I've been feeling like I dont really want to talk to people right now ,but doing better this week emotionally I have my oncologist appointment on Wednesday. I have no clue what his plan will be . What really scares me is that I had a wedge resection done too my ovary and I've seen several stories where the cancer/boderline is upstaged if there was some type of leakage. But we will see on Wednesday.

I hope your pathology comes back clear. The waiting part is definitely the worst feeling.

[Donmk in reply to Magalivazquez]

Hi there, yes I'm still waiting for the pathology to come back, it'll be another 2 or 3 weeks yet. The waiting is horrible but actually I'm doing quite well and generally not focussing on it at the moment... I'm more concentrating on recovery which is a bit up and down.

My tumor was also spilled because it was openly drained, I too feel quite worried about this but was told they do a wash after surgery.... Mine wasn't tested though because they didn't know it was a tumor at the time, it looked like an endometrioma.

The best advice I can give you is to be informed. It's a really difficult balance though because the internet is full of horror stories and we are all individuals with our own unique backgrounds. Go to your oncology appointments with a notebook, have some questions ready too.... my mind always goes totally blank and my oncologist does not give me any information unless I ask for it. I have found some calm by having lots of information, not knowing what's going on is harder for me to cope with... I like to feel as in control as I can. I also have had a course of CBT approx 6 months after diagnosis because I was not in a good place.... it really helped. Worry just eats away at you if you let it.

Be kind to yourself is my best advice of all x

[Magalivazquez in reply to Donmk]

Your experience has really helped me since we have some similarities. I agree ,I started the same mentally this past week end of no stressing or trying not to bc that won't change anything but it only makes me weaker since i dont eat /sleep when I'm stressed.

Good luck to you and you will be in my prayers. I hope it all goes well and you get nothing but positive news we'll be in touch

[Donmk in reply to Magalivazquez]

Hi thank you.... I'll let you know my results when I get them.

Remember I am further on than you so I may appear 'calmer' ... I was completely knocked sideways at the start of all this. I didn't want to go out or see anyone. Panic attacks became more and more frequent and I just felt very much 'on the edge'. It was all such a shock.

If I can help you in any way... just message x

[Lyndy]

Hi there....the waiting is really hard. As you say it isn’t really clear what you are dealing with yet. Please don’t go to Dr Google while you are waiting because he is famous for scaring the pants off us! Scary stories abound but you don’t hear all the ones where people got better or treatment wasn’t as bad as expected....because they don’t make news. Try to keep yourself occupied and avoid overthinking until you have all the facts...then you can make decisions. Keep talking to the fab ladies here..you will get lots of support xx

[Magalivazquez in reply to Lyndy]

I definitely should've taken that advise about Dr Google the first few days there is a lot of confusing information and scary too. But you are right there are also so many good news cases but those are not shown as much.

My oncologies appt is Wednesday .

[Lily-Anne]

The attached link is information from cancer research U.K. it hopefully answers your questions

cancerresearchuk.org/about-...

LA

[Magalivazquez in reply to Lily-Anne]

Thank you Lily, I did come across this page and have read it . But I guess our cases are always unique because of something , my obgyn was shocked with this diagnosis .She performed a wedge resection on my ovary which is what concerned her (and me) because of the possible leakage .

[Maus123]

Hello Magali (?). I'm a borderliner myself, so I know how scary even this diagnosis can be. Although in the land of ovarian cancer, being diagnosed with a stage 1 (?) borderline tumour at a young age usually come with a good prognosis.

My own prognosis and history is not that great because mine a) had spread into the abdomen already, b) it was mix with properly malignant low grade tumours and c) I was diagnosed when much older.

For you, I hope the borderline OC stays away for good and you can 'work' with your remaining ovary capacity to have children. Trust your gyn. oncologist and discuss your options and next steps with him/her. In the meantime please know that we all support you and you will find a friendly place here where any emotion or question is allowed.

All the best. Maus

[Magalivazquez in reply to Maus123]

Hi Maus123 , Thank you so much for the support. I admire the strength of all these lovely ladies to cheer someone else up when you are going through your own struggles . That is absolutely amazing .