New Here and I'm Terrified

I had surgery a week ago to remove an ovarian cyst. The doctor wasn't concerned since I have PCOS. She thought it was a dermoid cyst. Surgery went well, and I went home feeling very positive.

The initial biopsy came back showing a borderline malignant tumor. Although scary, she once again seemed positive because it was caught early, but sent the slides to Mayo Clinic for a second opinion.

I found out today that it's not so positive. The biopsy of the ovary shows "Clear cell carcinoma arising in a borderline clear cell

tumor" and the endometrial biopsy shows "Proliferative endometrium with stromal breakdown and focal

atypical clear cell changes."

I don't understand what much of that means, but my doctor is telling me this is cancer. I see an oncologist obgyn next Friday. They are rushing everything, which is also scaring me.

I made the mistake of Googling clear cell carcinoma and scared myself even more. Apparently it's the really bad kind. She already told me that they have no idea how advanced this is until we do a complete hysterectomy with staging. Initially it looks like stage 1, but they can't be sure. I'm extra worried because of the atypical cells they found in the uterus. I assume atypical means cancer too.

I am absolutely terrified. I just went back to work this week, and I am trying not to have a complete breakdown in front of everyone. Already I have been so nervous that I'm not sleeping or eating. My Dad already has me in the grave - saying that everyone eventually dies when they get cancer.

I'm only 35. I just want to live, and I need answers.

Any tips on how to cope? I feel like I'm going to have a nervous breakdown.

25 Replies

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  • I apologize. This is under the wrong tag, and it won't let me edit.

  • Hello and welcome but also sorry you are here. Sounds as if it's been a whirlwind for you. The waiting for test results is just the pits because inevitably your mind runs away and you start asking Dr Google.

    What you are going through is natural ...you are worried sick. Could you take some time off or at least tell work what's happening so they can support you?

    I would suggest calling the Ovacome nurse led helpline tomorrow morning...just because they are sooo reassuring and know what they are talking about...unlike your poor Dad who is probably also very worried.

    no one keeps their cool through diagnosis ...it was the worst time for me...I felt so much better once there was a plan but with any luck yours has been caught early and that's a really good thing. Try to take one day at a time and get yourself some support...Macmillan are also really good if you have a centre at your hospital.

    Lots of love to you...you will get through this! xx Lyndy

  • I would love to take time off work, but I'm worried when I know I will most likely be out for treatment. For me it's the not knowing exactly what's going that has me the most scared. I wish I hadn't even looked on Google because it gave me too much information that I don't understand. And very little of it was positive.

  • - for good info I would really encourage you to stay with trusted sources.

    Here in the UK there is a booklet specifically for younger women published by the main charities- Ovacome, Eve Appeal, Target Ovarian Cancer & Ovarian Cancer Action. You can download it from their websites or request a free paper booklet. Also, realky revommend Target OC's booklet 'What Next?'. It's a really good guide for all women newly diagnosed ( & helpful for those nearest too) & can be found on their website.

    It seems you may be in the USA & hopefully someone can recommend some good charities & sources of info there as well...

    SX

  • PS I had what was thought to be 'harmless' dermoid cyst removed in 2012 by gyny aged 39. Histology showed borderline (mucinous type) cells... referred to oncology team who retested and found invasive cells too. Almost 5 years ago exactly I was in hospital having big op (confirmed stage 1c) & then had 6xchemo due to rupture during first op.... I've been (very very fortunately) NED, which means 'no evidence of disease' ever since....

    You can do this.... you'll be surprised by what you can do taking it step by step... wishing you hope & strength xxx

  • Hello Quiggs,

    Welcome to the forum even though I bet you would like to be anywhere else! I had a similar diagnosis to you, had a cyst removed that turned out to be OC high grade so had to have full hysterectomy and chemo. The lead up to my diagnosis and the gap between the two surgeries was the most stressful part of my life so far so I can really empathise with you at this point. The waiting is torture to say the least and once you have seen the Gyno Onc and know what the next steps are you will feel much better.

    Most of the women on this forum will tell you not to google, it really doesn't help and only serves to increase anxiety and make things worse, at the same time not googling is easier said than done but try not too, you will see only statistics and you are NOT a statistic!

    I finished chemo 2.5 years ago and 19th Nov is the second anniversary of my second surgery. I am really good at the minute thankfully. I was diagnosed with Stage 1C High Grade Ovarian Cancer and so far I have lived to tell the tale! I was older than you when I was diagnosed but young for OC, I was 45.

    Please try not to panic, the medics sound like they are doing all the right things and the speed with which they are doing it is a good thing! You will get much more wisdom from the wonderful ladies on this forum and there are many of them that were diagnosed with clear cell.

    Its a very scary time for you but I know the ladies on this forum provided me with the best support when I was originally diagnosed and continue to do so 2.5 years later so keep in touch and we will all help you through this.

    Take Care

    Dx

  • Thank you. I am happy to find so many on here who have lived to tell the tale. My doctor has been great so far, but there are so many unknowns.

  • Hi lovely,

    Welcome to the family first things first Dr Google is way out of date so don’t pay any attention to him secondly you’re in the right hands and the fact they’ve sent your biopsy for a second opinion shows they’re on the ball so that should be of comfort. As a supporter of someone with cancer I understand completely where your dad is coming from when my special person got diagnosed she was told she would live 6 months with chemo and to celebrate her birthday early that was 2 years and 7 months ago by that point the surgeon said she’d had the cancer at least 5 years. Ask for the BRCA test as if positive there are a lot more treatment options further down the line your oncology team will determine the best course of action for treatment and things.

    All the ladies on this site are a fantastic support network all very knowledgeable and will teach any new person a lot and we’re all an extended family for each other as we understand what others in our lives don’t.

    Good luck keep us updated and any questions please ask anyone we will all answer xxx

  • Thank you for the perspective. I realize this is hard for my Dad as well. I know he didn't mean to say the wrong thing. It just caught me off guard.

  • You could be telling my story.... so I have enormous empathy for your situation and how you’re feeling. The anxiety is overwhelming.... I’m so sorry.

    But first to the facts. You will soon become familiar with the terminology but I’ll try to keep it quite simple for now. Without your actual pathology report I may not be entirely correct with my assumptions so please don’t take what I say as absolute, but I hope it may help explain some things.

    Ovarian clear cell carcinoma is indeed a rare and aggressive subtype of epithelial ovarian cancer. It always is “graded” as high grade (very abnormal cells, fast growing). But due to the fact it tends to form encapsulated tumours rather than “seed” out into the peritoneum it is more likely to be caught in the early stages whereby the prognosis is actually much more favourable than some other ovarian cancers caught at the same stage.

    Proliferation endometrium is just terminology for how much shedding is happening of the endometrial wall — it changes according to where you are in your cycle. It is a normal finding. The atypical cells in your uterus sound to me like a condition called atypical endometrial hyperplasia. This is a pre-cancerous condition and atypical does not mean cancer BUT the “clear cell” component is concerning and suggests to me cancerous cells in the uterus. Again, this is rare and high grade.

    I don’t have enough knowledge to tell you if the endometrial and the ovarian malignancy are related. I suspect you have two things going on. However the treatment for both may be the same - most likely a total abdominal hysterectomy, debulking surgery followed by chemotherapy. Once you know the stage of both conditions your team will make a specific treatment plan. Some people have chemo first. Sometimes radiation is used.

    You have so much to process right now and I KNOW how awful that churning, adrenaline-filled anxiety is. Once you have the full facts and a plan in place this may ease a little bit.

    This is a wonderful forum and we are here for you. Talk to us. Take care xxx

  • Thank you so much for explaining what some of the terms mean. Google was giving too much information, and I didn't know enough to figure out what it all meant. It's going to be a long week until I see the oncologist, but this at least makes me feel like I know something.

  • Hi, As usual all the ladies have given you good advice I just would also like to say do not google, you will be better coming on here for advice or post to Overcome for help and once you have a team in place always ask questions, this will help you understand the treatment plan your team has for you.

    We all understand how you feel not knowing what is in front of us but when treatment is in place you will feel a lot better.

    As for your dad I'm sure he is just upset and also worried for you. yes some people die of cancer but a lot do not.

    Cancer is such a frightening word when we first hear it but there is hope.

    Do Keep in touch if for advice or just some encouragement..Sending you my support and best wishes Lorraine xx💙

  • I'm new to this group too but I really related to the ovarian CA stage 1 c. That's my diagnosis - I had a tumor removed (in CA) Aug. 10, the size of an NFL football with cancer inside the size of a cantaloupe. But here I am - have just had my 3rd session of Carbo taxol Tuesday and am, if past is prologue, in for a very rough weekend. Oh and im bald basically! Small prices for a very positive prognosis!

    So dear Quiggs, take heart. This sounds to me like you may be in the same class. And to the wonderful women - and men - who post here - many of whom are so much less fortunate than I, thank you for your courage and wisdom and such easily shared love. My thoughts are with you all - and I see how you have defied the odds time and again. I may yet join your club too - nothing is guaranteed.

    To hell with Dr. Google!

    Quiggs you have found the right place. Try to breathe until you get to your gyn-oncologist and keep yourself occupied with pleasant things. You will have so much better a handle on this after that appointment.

    Keep us posted.

    Much love to all.

    Judy in CA.

  • Welcome to the group. I have clear cell carcinoma of the ovary stage 3c. I was totally stunned by my diagnosis as I had been very fit and healthy all my life and the only symptom I had was nausea. I have googled and but find the forums far more useful. I have had lots of great advice on here, from Inspire and from the Facebook page. There are many of us with clear cell. At present I am hoping to get on a clinical trial. Please keep us posted.

  • Try not to worry too much. I was diagnosed in 2012 with a Clear cell element. It is less common than serous cell which I also had and is commonly stage 1.

    Clear cell has a greater chance of being dealt with through surgery as the clusters are a hob nail so group together as opposed to scattering. I would expect them to perform a hysterectomy remove omentum and cervix.

    It is scary but positivity has a lot to do with quicker recovery. You can do this and we are here to help you

    LA xx

  • Hi Quiggs,

    Sorry you're here; but glad you found us. I'm in Seattle but have found this board the best of the bunch....very supportive and not overly dramatic. I won't comment on your possible diagnosis because what I found is that it can change as more tests and information comes in. I've also learned that cancer is not "an exact science" and doctors can only give us the information they have at the time. Like you, I wanted to KNOW....RIGHT NOW DAMMIT.... but it didn't work that way most of the time.

    What you are feeling - the overwhelm, panic, reactions from family members etc. - is normal in this abnormal situation. What helped me tremendously in the beginning was the support from the oncology social workers at the medical center where I am being treated. They helped me and my grown daughter navigate the emotional and financial stuff that came up, especially in the beginning. I don't know where you are in the US but most medical centers that treat cancer have amazing supports these days. Use them! In the meantime, hugs and wishes for peace of mind to you from Seattle. Kathy

  • Many things are in your favor! 1st seeing a gyn/onc is a great start. Once they do the staging this will answer many other questions as to the type of therapy you have. YOU also have your age and general health on your side as well. You also have already seeked out a wonderful support group and while we all may have different types of OC we are all in your corner supporting you and encouraging you to do what feels right for you despite what well-intended friends and family may say. Gladly there are many of us that are still here after our " best opinion expirations dates" and are THRIVING.

    Deep breaths and get ready to drink lots of water to keep your body hydrated through any treatment you decide on.

  • Hi Quiggs, i just want to say welcome and confirm everything the other ladies have said.

    I was diagnosed stage 1C3 clear cell carcinoma in 2014, I had a 30cm bugger removed, I had the surgery and chemo and I’m still here driving everybody nuts.

    Dr. Google is so very out of date and much of the information there is totally bogus, so please avoid it and if you can’t leave it don’t believe it.

    I understand your dads fears, my hubby had the same ones, Once you know the plan of action they will put in place for you you can start to focus on getting well and he will have something to focus on. Try to keep positive and go with the surgery and treatment. Keep well, big hugs and love ❤️Xx Jane

  • Although not exactly the same , my journey has been much better than expected. Doctors don't have all the answers, they just do the best they can. My doctor did not want to give me any false sense of hope (very serious) and told me December (2014), not to postpone surgery for 5 months (until May), like I had wanted to do (for convenience) because I may not EVEN MAKE it to May. Then, we HAD to postpone, at the very last possible second, as I was just about to be wheeled of, when that surgery was canceled for an unexpected lung tumor issue (long story). I not only "made it" to the following May, but Drs are amazed that I am NED and doing well, for now. I realize it could come back, and just take it one day at a time. I don't worry or think about tomorrow, and absolutely know that God is in control of it all, and I trust Him- for the WHATEVER. Hope this helps and encourages you just a little bit. Am truly hoping for all the BEST for you. Please keep us posted here, share your journey- and hope it's MUCH better than you or doctors hope or expect. The thing for me, l didn't "expect" anything- good or bad. I still don't, and just continue to "hope" for the best! So far, I'm enjoying the BEST!!!!! It has been a real good experience, with good doctors, good meds, even good memories, by the Grace of God- only by His Grace....

  • Thank you everyone. I've had a few days to process. While I'm still feeling devastated, I've reached the point where I'm also really angry and ready to fight this thing. I was able to get my appointment moved up to Tuesday by being able to drive into Chicago to see my doctor at his office there. That also makes me feel better not having to wait as long.

    The hardest thing I'm dealing with now is family and friends. They're reactions have been an interesting mix of encouraging and upsetting. Most of them don't know how to react.

    I'll keep you updated as I learn what is happening. Thank you for letting me vent. It has been helpful to hear from others going through the same thing. You give me hope.

  • Hello , sorry to hear this , Ive been there, in that initial stage when you're just getting diagnosed and its so stressful ...

    Try not to panic. Harder said than done i know, and don't listen to your dad. You might find that lots of people make insensitive comments during this period so be selective about who you want to discuss this sensitive subject with.

    If your doctor said it was caught early , have faith, because that is very positive news.

    Sounds like you're in a similar situation to my experience- i had my ovarian cyst removed first. Was then diagnosed with cancer. I then had that ovary removed surgically. As i am also in my thirties, i chose not to have a full hysterectomy and my consultants were very supportive of that.

    First, speak to your consultants to find out what they are recommending as next steps. Have you had a CA125 blood test? What was the result?

    A typical cells are not cancer. They are abnormal cells. The human body fights atypical, rogue cells naturally. Everyone has these.

    Sometimes, where cancer is found, atypical cells will be found alongside cancer cells. There are many different types of cancer cells. It sounds like yours were just beginning to turn, into clear cell and yours were borderline so this is something to be positive about (i know that sounds weird...) because it is very early stages and it can be treated.

    Next steps, i would imagine is that you'll be asked to have an MRI and CT scan to ensure that no other growths are found in your body. Your consultant will then meet you to make recommendations about next steps.

    Depending on which hospital you go to, you'll get different advice. In my experience- i went to UCH and was told i had to have a full hysterically and there are no other options. I then seeked a second opinion and was told at Royal Marsden and Bupa in Chelsea that they would never have recommended a hysterectomy at my age and with my stage. So do your research and do whats best for you and what you're most comfortable with.

    Do not google - you did the right thing by coming to this site. All the lovely ladies on this site, literally saved my life by giving support and making me feel positive . They can share so much useful information and their experiences.

    Try not to use sites other than NHS, health unlocked , Target Ovarian Cancer , and Macmillan . Through experience i have found a lot of inaccurate and out of date information on other websites.

    Hang in there, and we're all here for you . All the best, x

  • I had a CA125 test. It came back normal (8). This is why the doctor was convinced there was no cancer. Surprise... My biggest prayer now is that the doctor is right and it was caught early. Thank you for advice on other sites. Still looking for one in the US that is as active as here.

  • There's a site called Inspire based in USA which, from memory, was really big and active. Link here:https://www.inspire.com/groups/ovarian-cancer/

    I think on Healthunlocked there is a community called Shine which is hosted by a US based charity. Its relatively new to HU so still building members and supports women with both ovca & breast cancer. Worth also seeing what active Facebook groups there are and if there is one that suits you... There is an active borderline ovca one which i've heard recommended xx

  • Oops sorry bit muddled!! 'Share' is the US hosted community on HU which ive mentioned above!

    By the way, Shine is a great UK based charity for younger adults with a cancer diagnisis and i would imagine has links with other similar groups in other countries! Sx

  • You're very welcome. "Inspire" is a US site which is also a useful source of info

    inspire.com/groups/ovarian-...

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