My Ovacome
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Clear Cell Ovarian Cancer

Hello ~ I'm new here ~ I'm 39 years young :) ~ On 3/8/18 I went in to have a hysterectomy because a watermelon sized mass was found on my uterus. When they went in to do the surgery it was my left ovary that was the size of a basketball. They removed my left Ovary, Uterus, Appendix, Lymph Nodes and a layer of fat. I was diagnosed with Clear Cell Ovarian Cancer. I was in the hospital for 6 days. Yesterday, was 4 weeks post op. I had an appointment with the Oncologist to set up my Chemo treatment plan. Only to find out that I now have a growth on my right Ovary the size of a grapefruit...SIGH.... Why wouldn't they just remove that when they removed everything else? I am so discouraged right now. On top of all the stress I'm already under I get to worry about being opened back up to remove the right ovary and go another 4-6 weeks of recovery before I start Chemo. I'm having a really hard time coping with the fact that I need to have a port put in and that I'm going to lose my hair. Any suggestions and support are welcomed.

Thanks

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Hi lovely,

Sorry you are having a crap time at the moment and at such a young age. It is better to have the operations to remove the tumours and chemo after, it gives you the best chance, you are young and fit and It will get you through. There is advice on the website and a nurse online, certainly worth a chat to give you good advice, best questions to ask and assurance.

I didn’t have a port, but would if I had to have treatment again, because finding veins for chemo can be a pain.

You can have the cold cap to help prevent hair loss, personally, I saw ladies that it didn’t work on, so, just decided to get my wigs and hats before I needed to and my son shaved my head after my first chemo, so I didn’t see it falling out. I finished chemo in March and didn’t need my wigs etc in August of the same year.

I am a coward, but surprised myself by being so strong, it is all do able and not as bad as you think it will be,there are amazing ladies on the site that live long and very full lives, it isn’t the end by any means, I am still here 3 years after and disease free.

Let us know how you get on and don’t be afraid,

Love, Carole xx

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Thank you, I did ask about the cold cap therapy but was told that they didn't offer that :( ~ I was told I had to get a port because my veins are so small and roll. Every time I get an IV I have a bruise the size of a baseball. I am usually a very positive person but I feel like I have been punched in the gut and everything seems to be going downhill. On top of all this I don't have insurance and I have to pay for everything out of pocket. My girls made a go fund me page and I have had a few donations I'm so stressed about having to pay for another operation on top of everything else. I have to pay for all the scans and test up front. Thank god the Cancer Center don't take payments up front.

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Please give us the link for your Go Fund Me Page.

I will say more later.

Best wishes,

Laura

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😘

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Hello sunshine, that is rotten for you, I guess there was a reason they left that dodgy ovary in?

I am clear cell too and it sucks, but us rare types need to stick together ....I really send you all my best wishes for all ahead, and hope you are doing ok, and getting the best care you can.

The only positive suggestion I can say, is I am the opposite way round to you - I have had left ovary and stupid cyst removed, and now waiting for the big surgery to get everything else out. Now, when they took my ovary & cyst out, it was keyhole, not like the big op, so quicker recovery time. I had 3 punctures and then an inch scar where the ovary was removed. I don’t know if that is possible for you (as I know scar tissue is an issue) but I was given a 2 week recovery (no heavy lifting for 4-6 weeks but back to light work in 2), so fingers crossed you will not have a big long wait for chemo if they can do something like that for you....it might not be suitable for you at your stage but you never know.

Wishing you all the very best for the future, and hope you make a quick recovery xxxx

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Ps my cyst was grapefruit size so not as big as yours but they still got it out via a wee incision (it had ruptured though, so maybe that was the reason....not sure) ....anyway hopefully remaining surgery not so major as first lot, I guess I am trying to say, big hugs xxx

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Thank you! My OBGYN thinks its best to open me back up so they don't take the chance of rupturing the mass in case it is also Clear Cell. This is very stressful due to the fact that I have no health insurance and everything has to be paid out of pocket. I have to pay for all the scans and test upfront. Thank god that the Cancer Center don't require an upfront payment or I would be in a jam. My daughters started a go fund me page to help me pay some of the bills. Now that I have to have another surgery I'm not sure I will ever be able to pay all these bills.

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Oh sweetie, that’s truly terrible, I am in the UK, so we do not have that issue, I am so so sorry that you have that extra worry, I wish you all the very best for the future, and have everything crossed that you will end up with a positive outcome xxx

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I am so glad I found this site! Its nice to be able to talk to people that are going through the same thing. Don't get me wrong I have a great support system but they don't really know what to say, so I keep it all to myself. The one thing I'm tired of hearing is its just hair it will grow back. That's easy for them to say, it's not their hair. I now have a come back for that statement... " if you aren't planning on shaving your head when I shave mine please don't say that anymore" It seems to leave them speechless but I'm really tired of hearing that.

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Hi, Sorry you are having a hard time but I would like to put your mind at rest about the port,I've had mine now for over 2 years and would not be with out it, Take care Lorraine xx

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Hi

Welcome to the party 🎈🥂

Have you asked if it can be removed key hole? When I had ovary,cyst,tube removed it was done this way and is much less invasive. Recovery time for healing is much better too

It’s quite tough at first with recovering from the shock of diagnosis and finding yourself in a different mental place plus physical recovery too. Being kind to yourself matters the most, your body will be busy rebuilding resources before chemo

This is an amazing community that you have joined. The mine field of experiences, joy and tears leads us all to supporting you. Good luck with what is next

Look forward to your updates

LA xx

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Thank you for your support! I have another appointment next Thursday. The Doctor called me and told me she would take a look at my stomach then but more then likely I would have to be opened back up because they don't want to take the chance of it rupturing.

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Hi Sunshine, it truly is normal to feel like you are feeling. If you need some advice on the phone, it might be easier to chat... but it’s up to you. Pm me if need some support. I’ve been in a very similar situation to you and can take you through it all gently.

We are all here for you, love Nicky ❤️

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Thank you! I was ready to start this journey and then find out it has to be pushed back for this surgery, I just want this to end :(

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It’s tough. You will do it x

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Hi sunshine, it's a shit time for you, I remember it well, I was diagnosed at 44, still early for oc. I was also told it was clear cell, but 9 years on I'm still here despite 2 recurrences, looking forward to retirement( yep looking forwards) next year, we never know how we will react to things till they come and slap us in the face. Btw I never had the cold cap and lost my hair, but went with the hat/ scarf option... couldn't deal with wigs.

You're stronger than you think you are.

Lots of hugs

Sue

X

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Thank you Sue ~ I'm so glad to hear that you are doing well. Hate that you had the 2 recurrences. But, it's nice to know that the Chemo works for Clear Cell ~ I have read so many articles saying they wouldn't put your body though this for a Stage 1. But, my Oncologist said that it is such a rare and aggressive form of cancer that it needs to be treated like its a stage 4. I will do what I need to do for myself and my family :)

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Hi sunshine my 2 recurrence were treated with surgery, and I had some avastin as part of a trial.

I believe that most recurrence that are able to be,are treated with surgery especially clear cell

X

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Oh Sunshine,

This is a truly terrible situation and hard to understand how they could have missed the cyst on your other ovary.

I remember thinking, after my surgery, that I could not stand to be opened up again, but after I healed so well, it did not seem so off putting.

One good thing about opening us up, is that the surgeon this time, can take a good look around and really check for further growths.

About the port: In the U.K., where I also reside, the standard is another type of permanent access called a PICC Line. I was terrified to have this installed, but it turned out to be a gift from the gods, as it meant effortless Chemo infusions, easy blood draws, as well as easy CT scan contrast injections.

In the states, they prefer Ports, and it will save you so much bother! And you can shower with one, even if you feel like the bride of Frankenstein.

The American medical and Insurance system is a terrible situation. When one is ill, it is a awful burden to not only have to prepare bills, but scheduling procedures and appointments is an added hardship, let alone figuring how to pay for these! The stress alone is not bearable for one so ill.

Please have your daughters also check with Cancer Charities to see if they have support workers who can help you navigate this.

About losing your hair, I have to say that this must be very difficult to face, especially if you have long luxurious hair, of which you are very proud.

But, I have to say, I gloried in the loss of my hair, because it proved that the chemo was definitely killing cells -and hopefully also destroying every cancer cell in my body, from top to toe.

I hated wigs, when I was very ill, but hated seeing my bald head more, so I finally got hold of a terrific wig, through a cancer charity here in the U.K., and I love it! I wear it from the moment I wake up, to the moment before I turn out my light at night!

6 weeks post Chemo , my hair is coming in pretty evenly, but I will need this wig for several more months.

It is an awful situation for you, made worse by the evil insurance companies that are so hard to afford, and the expense of prescriptions and medical care you have to face without a national health system. But, do try to contact the cancer charities and see if they can help you.

Best wishes in all of this,

Laura

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Thank you Laura!

I was told they left the right ovary because it looked good and was smooth ~ Not sure how I grew something so large in 4 weeks times. I wish we had free Health Care :) I will look into the cancer charities. I think I am still in shock. I find myself looking up everything and everyone is so different I find the good, bad and the ugly. I know I should be thinking of myself at this time but I find myself worried about my family and how they are coping with this. My Mammaw is not taking this well and I think it is taking a toll on her health :(

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Maybe look into churches, temples, etc too.

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I was trying to prepare myself for the hair lose so I went and cut 7 inches of my hair last week only to find out I had to have another surgery and Chemo was on hold. So, I guess I will keep cutting it shorter as I go through this process until it all has to go :(

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Thank you so much for your donation and sharing! Your wig looks great. I need to go invest in one so I can try to match it up to my hair and style before it has to go. Thank you again for everything!

BIG HUG

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Sunshine--I too had two surgeries. They had to take a mass out near my heart and diaphragm and were hoping to do the "big surgery" at the same time but decided chemo first would be better. I was upset I had to wait to start chemo also---thought it would be too long a wait. Diagnosis was end of June, first chemo in mid-August and it did not make a difference, I was NED when all was said and done. Recovery may be easier for you the 2nd time. Wishing you luck and take it one day at a time....a lot to digest. This is a great place to discuss, vent, and get amazing information and support.

Hugs,

Judy

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Thank you Judy ~ Its hard to talk to people that don't understand what you are going through. I'd love to push the Chemo back until November but I know I should do it sooner then later :)

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So sorry to hear of all you’re going through :( This site is amazing and there are so many amazing women who are full of knowledge. Hoping everything goes well for you.

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Thank you! I'm glad i found this site :)

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HI Sunshine, are you in the USA? If so you may find that as well as this forum the Share community on HealthUnlocked is worth joining (they have 3, one is for Ovarian Cancer). Its run by a US charity and so I would hope they would be able to support issues with funding treatment.

The link to the HU group Share Ovarian Cancer is here: healthunlocked.com/share-ov...

We are very lucky within this community to have people from all over the world who are affected by the diagnosis of ovarian cancer. There is so much that we have in common and also much to learn from treatment approaches in other countries. There are though significant differences in healthcare services... I do hope that you find the support you need to access the treatment you need. There must be better options than GoFundMe and I hope you are able to get expert advice from US based charities.

Sx

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Hello Sunshine,

So sad you have had to join us, but very pleased you have done so early in this part of your life. Quickly wizzed through all the chatter and picked up about your distress at losing your hair. Won't bore you with my saga but the thing that helped me handle my feelings around being bald, eyelash and eyebrow less was a video (7 years ago now) from 'Looking Good, feeling good'. This helped me do my make-up, tie head scarves, look at quirky hats and earings etc. The link is lookgoodfeelbetter.co.uk/ but they say they are an international charity.

Warmest wishes for a goood day, Lesley

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Thank you! I will look into the link you mentioned. I hope all is well.

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Oh you poor thing! I had everything removed last September- except they did it all very quickly in one hospital visit (two operations, I was there for 19 days.) The following week, after I got out, I had a port inserted. It's not the nicest thing to look at- but it's a godsend. I wouldn't be without it! My veins are completely non-existent so it's been wonderful to have it. I also lost my hair, eyebrows, eyelashes etc. But, it's all growing back. Don't worry about losing hair. No, it doesn't look great, but the treatment is there to help you and heal you (hopefully), it's a tough thing to go through, but you'll get there. I think many of us are amazed to find out how strong we actually are. You've found the right place to be here with this community- so much wisdom and kindness. Just log in whenever you need a laugh, or a moan. Hugs from Leipzig xxxx

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Thank you!

I've always thought of myself as a strong person but every time I start to think about my hair falling out The tears start flowing. I thought 6 nights in the hospital was bad I couldn't imagine 19. Hope you are doing well. Thanks for the kind words.

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Dear sunshine, I had 2 major surgeries, good thing is now on second surgery hopefully van take out any abnormal lymph nodes. My surgeries were a month apart. Pathology screwed up mine. Doc had to go back in , good news they'll open same incision after 2nd surgery the area was numb. Didn't bother me as much and I wasn't nervous because I knew what to expect. Ask your Drs about stomach wash chemo, IP intraperitinel chemo. It worked great for me. I've been cancer free with no recurrences. I know they don't doit early in the UK, but its done early in the US. It can add 3 yrs onto your life with no reoccurring disease. I just passed my 4 yr mark. I started chemo 4 weeks after surgery. IV one time, then both IV and IP after stomach healed 18 rounds in 14 weeks, very aggressive but worth it in here. I had all my female organs removed, appendix removed, and colon scraped cancer attached. Removed some omentum fort surgery. 2nd took the rest of the omentum and 15 lymph nodes cancer cells in 2. That was my story, its similar to yours I'm also stage 3c clear cell ovarian cancer. I'm doing well. I wish for you the same.❤Liz

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Thank you for sharing your story. I didn't realize they would cut the same incision. I go Thursday and will find out exactly what to expect. So glad to hear all is well after 4 years.

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Sunshine I needed a port attach to my right rib cage for IP chemo. I didn't have port for regular chemo but wish I had because my veins also roll and don't thread. It would have been easier. No pick line too much infection. 🌸Liz

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So sorry you're having such a bad time of it. I can only think that they didn't remove the ovary due to your younger age and didn't see the need. Im sure if they saw a growth they would have removed it. Anxiety over starting chemo is a free for all, to say the least. You feel like youre doing something to get rid of the cancer, because deep down, all you want is the cancer to be gone. Totally get it, been there. In fact, I get 1 dose every 4 weeks so waiting between doses gets me a little anxious by week 3. I had dose 4 out of 6 yesterday and I got my ca125 numbers and the chemo is killing it.... I'm killing it, and you will be too. Feel better and rest, reserve your strength. Remember it's a journey, not a destination.

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Also, sunshine I've had a port put in as I have no veins left from previous chemo, been fighting cancer on and off since 2007.. the port is wonderful. You don't feel it at all and truly, no fuss, no muss. Cancer center is supposed to be wonderful.

I've had blue cross blue shield but now I'm being forced onto Medicare next month since I've been on disability for 2 yrs this May. Medicare sucks with bills and my hospital also asks for up front payments for scans. Don't know how I'm going to pay for my upcoming care myself but my hospital and doctors told me not to worry about it. There are groups that fund care.

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Thanks for sharing. I went to the Doctor yesterday and have to have the 2nd surgery next Wednesday to be opened back up via the same incision. I was told I would be in the hospital a minimum of 3 days. I sure hope it's only 3. I was in 6 the last surgery. They are going to put the port in at the same time as my surgery. I'm really dreading this. I'm trying to stay positive but I feel so conflicted about everything.

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It will be fine. Good luck with your surgery on Wednesday. I myself have a pt scan for tomorrow. The port is not an IP Port, right? Just the regular one to access veins. I hope you have aspeedy recovery.

Check in, ok?

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