Scared newbie : I’m 46 and only Friday found by... - My Ovacome

My Ovacome

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Scared newbie

Beachesinsummer profile image
29 Replies

I’m 46 and only Friday found by ct scan that I have a ovarian tumour with ascites 😢 I have been dealing with a dodgy gallbladder so when I started getting bloated I put it down to that ,so the swelling got steadily worse and went drs who kept giving me IBS tablets ,wasn’t until last Monday that I actually got to see my own dr who felt tummy and then suggested urgent scan!! I’ve had both and the results is as I’ve said ,I’m due to go to the gynaecologist this weds but due to virus on my own - I’m seriously scared about the outcome and the options ,will I be able to get through this ,I’ve two children so not worried about hysterectomy but lost my mum to bowel cancer so know how cruel it can be ! Just after some people in the same boat really to keep me away from the dreaded google ! Which unfortunately I keep gravitating too !!

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Beachesinsummer
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29 Replies
Lyndy profile image
Lyndy

Hello

Well I just wanted to send you a virtual hug because the process you are going through is really tough without the added bonus of Covid 19!

It’s good that your doctor has been proactive about getting you seen. Don’t forget that nothing is certain for now... try to keep calm, I know that isn’t easy.

As for Dr Google... you are so right to avoid him! Most of his stats are out of date and he will just scare you. Ovacome, Target Ovarian Cancer are both reliable sources of information.

If the worst does happen and you are diagnosed, we are here for you and everyone is very generous with tips and experiences. Let’s hope you don’t need us and it is something else! xx

dexta2005 profile image
dexta2005

Hi, so sorry that you find yourself in this situation. My only symptom was ascites and that was back in November. I have had 4 chemo's and have to book the next two as my surgery has been put on hold. But at the moment I feel really well and that it is all a dream, especially with the way life is at the moment. At the beginning, it is frightening and a roller coaster of emotions, but it does settle down and the nursing staff are fantastic, plus you will find a lot of support from the other ladies on here. Any questions, please ask. x.

Beachesinsummer profile image
Beachesinsummer in reply to dexta2005

Thanks so much for the reply ! I’m so overwhelmed and only dark horrible thoughts at the moment ! Any way to make the ascites “bloat” more comfy ?? Xx

dexta2005 profile image
dexta2005 in reply to Beachesinsummer

I had to be drained, which wasn't as bad as it sounds. They do an ultrasound and insert a small drainage tube under local anesthetic. The relief was immediate. But it depends on how much fluid you are carrying. x.

Beachesinsummer profile image
Beachesinsummer in reply to dexta2005

Oh I can imagine how much better it feels ! Mine isn’t so bad the last couple of days ? Not sure why? Xx

Lizchips profile image
Lizchips in reply to Beachesinsummer

I was drained every 2 to 3 months I had developed a lymphocele, after surgery fills with lymphatic fluid. 5 yrs later no more draining it went down mine was a large cyst. In pelvic region from surgeries. They'd drain put iodine back in sack then alcohol slowly after a couple yrs less fluid was shrinking. Now still there but only 20 cc of fluid used to be 300. Hopefully you will see light. Google foods that bloat, try to avoid some. Best wishes Liz

figroll profile image
figroll

Hi Beachesinsummer

Love your name... wouldn't a beach in the sun right now be the perfect antidote to all this worry?

I'm in a similar boat to you. Have had my scans, which they're not sure about but know I need full staging to diagnose properly. I'm waiting to hear back results of CT on Friday past. Have an appointment on Weds, which seems soooo far away. My consultant said I def need surgery, but still don't have a date and super worried I may not get the op because of this covid-19 situation.

It's the waiting and wondering that's getting to me. If they could just get on and get things sorted I'd be less worried.

As for your appointment, if you're going on your own, either take a notebook with you and take notes as you go or use the memo function on your phone and record the conversation - I'm sure your doc won't mind... just ask beforehand.

Good luck with it all. Let us know how you go.

xx

Beachesinsummer profile image
Beachesinsummer in reply to figroll

Wow yes we even have the same days for scans etc ! I read my results online as it was Friday evening ! Not sure that’s helped as obviously I don’t understand it all ....& stupidly went to google to find out 😫not my best move !!! I completely frightened the life out of myself but now found this site and one on fb it’s putting things in a bit more perspective (ish)

I was told on Friday that as the mass is very large and at the moment they are quiet (due to corona ) they should hopefully get me in! Your absolutely right about the not knowing - it’s driving me mad x

Oh yes a day at the beach with not a care in the world right now would be bliss !!

figroll profile image
figroll in reply to Beachesinsummer

Blimey! I got my results sent to me via email on Friday eve too, but the one-time passcode isn't working so can't access them. Driving me nuts that I can't see the scans, but probably a good thing too! I just need to be patient (Lol!) and wait to hear from the doc this week.

Hope all goes well. x

Beachesinsummer profile image
Beachesinsummer in reply to figroll

I almost wish I hadn’t looked now 😢

Lizchips profile image
Lizchips in reply to Beachesinsummer

Internet on ovarian cancer is only a study done years ago on a test group based on those women for 5 years. Chemo and treatment has gotten so much better stay off the internet. I was diagnosed in 2014 it's been 6 + years. I've had no reoccurance and I was diagnosed stage 3c clear cell cancer. Stay positive! I never thought I was going to die from this. Attitude is everything with this disease. We all go to Dr office and you see who's given up. The mind is miraculous. Stay positive you'll win. God only gives us what we can handle but expects us to rise and fight the good fight. Best wishes, Liz

27-359 profile image
27-359 in reply to figroll

Wow. I had my scan eleven days ago and am still waiting to hear. I rang Friday last and left a message. I am going mad waiting!

Jenny

Lizchips profile image
Lizchips in reply to 27-359

Call everyday. Squeeky wheel gets the grease.

fendweller profile image
fendweller

Your post reminded me of my first encounter with oc , the speed of everything ,blood test ,gyne ,scan and biopsy ,then being handed over to the oncologist. All was done with such care and compassion , You'll be allocated a cancer specialist nurse ,make good use of her , phone her as many times as you need to .

We don't know what will happen in these uncertain times ,nothing's quite the same now.

I was diagnosed February 2019 ,had three rounds of chemo , couldn't have surgery due to blood clot ,so had three more chemo cycles, time to recover then surgery ,again time to recover then three more chemo cycles. December 2019 told there was no evidence of disease. I know its not always plain sailing and there will be a lot of heartache and tears ,but you will get the best care,I'm not telling you this to go on about me ,but to tell you there's a lot of success stories on here , I've opened my heart and soul many times and always had a wonderful response ,I don't know how I would have coped without these fantastic women ,whatever happens we're here with you .

Cheryl xx

Beachesinsummer profile image
Beachesinsummer in reply to fendweller

Thankyou for your reply ! Can I ask how you found your chemo? This is really worrying me as much as an operation (never been put under before !) x

fendweller profile image
fendweller in reply to Beachesinsummer

I'm going to be honest ,I found chemo very hard ,no sickness ,but leg pain and weakness , ,I had chemo every three weeks , for me first ten days were worse, then I was able to do a bit more ,but I met people that found it much easier and didn't really have any bad side affects ,everyone is different , you will be given a twenty four hour hot line to ring if you have any worries or problems.I was anxious about surgery ,my first time too ,but it all went well and not as bad as I expected,.

My advice would be one day at a time ,don't over think anything ,push 'what ifs' out of your head ,one thing ,one day at a time ,I know its terribly worrying for you ,but you'll never be on your own with this ,you'll find you're stronger than you think ,keep posting we'll all want to know how its going .xx

Cheryl

triplets profile image
triplets

I really feel for you it’s bad enough without the added stress of this current situation. I know it’s scary in the beginning, very. I was terrified and let it consume me. My husband was my rock, very reassuring, very calm. He had been through stage 4 bowel cancer and has beaten it. Once you get the full diagnosis, once you get a plan and there always is one you will cope. There comes an acceptance and a determination to get through this. I wish we could all give you a hug......xx

Amiieb profile image
Amiieb

Hello

My mum (57) has just been diagnosed in January 2020 with primary peritoneal cancer (PPC) stage 3, which is a type of ovarian cancer but rather than in her ovaries it’s in her stomach lining but the cancer treatment itself is the same as ovarian. She too lost her mum to cancer in April 2019 after a short battle with pancreatic cancer, and her brother to bowel cancer last month who was just 49.

When mum was first diagnosed it was definitely the toughest few weeks for everyone. We couldn’t function, how could this be happening?! There were a lot of tears, and a hell of A LOT of googling, which is the worst thing by far to do but you just can’t help it I spent hours trawling the net for studies and cures.

But honestly this forum has been brilliant, all the data is coming from patients alike and it’s all up to date unlike google. Everyone here really does understand how you feel and can always point you in the right direction for advice. My mum started her chemo at the end of February at The. Christie in Manchester (UK) , 6 rounds of CarboPlatin and Taxol which is the standard treatment for ovarian cancer to begin with from what I understand. She’s 10 days into round 2 and she’s doing really well. They needed to adjust her anti sickness and steroids slightly this time round but she’s pretty normal other than fatigue and achy legs.

I really do hope your results come back the best they can and if you ever need advice no matter how big or small, use us as your new google, we’re all here for you.

Lots of love xx

Artgreen profile image
Artgreen

I’m so sorry your situation coincided with C19. It’s so much to take in. The strange thing is if you keep yourself just thinking no further than one day at a time all you have to do is turn up and slow down.

The wonderful staff do it all and have seen it all before.

The surgery isn’t too painful, painkillers work. The chemo isn’t great but it’s doable. I had taxol every week for 18 weeks and carbo every 3rd week during it.

Pay attention to the warnings about keeping things clean and watching out for infection. Which has now become business as usual with c19.

If there are delays to the chemo, depending on the diagnosis and staging it may not be a bad thing. They know what they are doing.

If you are interested in complementary approaches after the chemo I’ve found Jane McLelland’s book How to Starve Cancer is very interesting and I’m following her protocol as best I can.

So make sure you get some joy every day and write down what you are grateful for. It helps start to get the perspective back.

Wishing you the very best

Alex

dexta2005 profile image
dexta2005 in reply to Artgreen

Hi, I'm also trying to follow Jane's recommendations. I'm currently eating mostly plant based foods, hardly any meat or dairy, plenty of green tea and juices and no sugar. Can I ask what supplements you are taking? Best wishes, Jan.

Artgreen profile image
Artgreen in reply to dexta2005

Yes of course ! Metformin, berberine, fenbendazole, simvastatin, omega 3, Claritin, glucosamine, turmeric, low dose aspirin, vit b, calcium and Vit D, earl grey tea and green tea and quercitin

dexta2005 profile image
dexta2005 in reply to Artgreen

Thank you for replying. The only things I'm not taking at the moment is Metformin and a statin, which needs to be prescribed?, glucosamine, asprin (I'm on blood thinners) calcium and Earl Grey tea (bergamont?) I also take vit c, multi vitamins, milk thistle and sea buck thorn as well as the others you mentioned. I've got Fenbendozle but haven't taken it yet. How much do you take? I know its 3 days on, 4 days off. I've had 4 chemo's was due for surgery last week, but now postponed because of CV, so back to chemo on Friday this week and the final one three weeks after (carbo/taxol) I have high grade and was diagnosed back in November. So anything I can do to help myself is my priority. Many thanks again, Jan. x.

Artgreen profile image
Artgreen in reply to dexta2005

I take 1 gram 3 days on 4 days off for 10!weeks on and 10 weeks off. I went armed with the book to see my GP and Onc and they let they could justify prescribing the statin and Metformin due to my very slightly raised cholesterol and my BMI. They haven’t been persuaded by the doxycycline although you can buy it over the counter if you pretend you have malaria a nurse told me. I think they know I’d go to the Care oncology clinic and get them to prescribe if I couldn’t get it from them. Metformin and low dose aspirin are already being trialled as anti cancer drugs for different cancers in lots of hospitals.

Incidentally I find it interesting that chloroquine( another anti malaria drug) is being trialled for COVID-19. Repurposed drugs seem to suddenly be ok when they are really needed.

I was told to stop all supplements during chemo but I hadn’t started them at that point.

Wishing you all the very best

Alex x

Iwillbeatit profile image
Iwillbeatit

So sorry about your diagnosis the not knowing is frightening and Google makes it terrifying. Don't read when you talk to your consultant you will also be given a clinical nurse specialist. These ladies are your angels who will explain anything answer your questions and be at the end of the phone for you if you msg them they always call you back as they have lots of clinics. I know this must be extra frightening at the moment with what else is going on but with cancer you learn to just take one d a y at a time. We all have good days and bad days. Fatigue is the most common thing that everyone suffers with. This website gives you backup from people who have been thru it or are still going thru it. Not frightening average statistics. Ask a question you will get invaluable support and advice. I am stage 4b inoperable diagnosed in July 2018 had chemo still here and fighting to keep it from spreading further and living everyday . Good luck

Maxjor profile image
Maxjor

So sorry for all the angst, the worry and although so normal, we don't wish it on anyone! You have gotten all the best advice (especially not to google Dr. Google!) and I just want to add that any time I had an appointment I typed out and brought my questions with me (as my questions increased throughout the week I would add to my list). I would surely have forgotten half of them! One day at a time---keep saying you can do this--as we all are in this group--and come here often for advice on coping, what other's have done to make something tolerable you may be having trouble with, and so much more. Having virtual hands to hold of those who understand what you are going through is truly amazing. Hugs to you. Judy

Superkim profile image
Superkim

Hey Beaches,

I was 39 when I was diagnosed with stage 3 ovarian cancer and now I'm 51. No, it's not been easy, but it's a battle worth fighting.

Focus on what you can control and try not to pay too much attention to the horror stories...they seem to get the most visibility. Like so many other things in life, how you approach and deal with your situation will have an affect on the outcome. Become educated, ask lots of questions to the right people, be honest with your oncologist, trust your intuition, and seek emotional support when you need it.

You're not alone and you're stronger than you know. :)

Hugs,

Kim

Beachesinsummer profile image
Beachesinsummer in reply to Superkim

Thanks for that advice , am trying to remain positive and at least I’ve only got till weds to wait and find out exactly what’s going on ! X

Superkim profile image
Superkim in reply to Beachesinsummer

Hang in there. Whatever it is, you'll deal with it like a champ because that's what awesome, strong women like us do.

I'm keeping you in my thoughts and prayers.

Lizchips profile image
Lizchips

Hi my name's Liz don't be scared. I was nervous about the unknown everyone is. But things get better. You have to drink lots of water during chemo, staying hydrated keeps you from getting sick. Also ask Dr for prescription of lorazepam 1mg. If you wake up in morning and don't feel quite right take it it will keep you from getting sick then hydrate. Also for aches usually in legs joints and neck on day of immune booster shot usually day after chemo take Claritan no D, no D just plain claritan. It helps with bone aches take for 5 days 1 a day. I live in the US I know things are way different but this helps. I had IV chemo and IP chemo, IP is intraperitenil chemotherapy. I had 18 rounds in 14 weeks. You can do this. You might ask about IP, used in US, doesn't seem to be used in UK, guessing cost, but adds 18 months to 3 years before any reoccurance. I've had no reoccurance and have been cancer free 6 yrs + now. I have stage 3c clear cell carcinoma. Best wishes you'll do fine. Also getting up walking every day helps even if only around the house. I had horses to feed so I would go outside daily with my husband I'd make buckets up and he'd serve. It felt nice, the sun on me. Take care, Liz

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