Diagnosis, but awaiting pathology. Just need to... - My Ovacome

My Ovacome

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Diagnosis, but awaiting pathology. Just need to off-load! Advice on preparing for chemo.

GillyN profile image

Hi all

I was admitted to A&E 2 weeks ago with severe abdominal

/pelvic pain. Initial thoughts were diverticulitis but CAT scan showed mass on left ovary and inflamed lymph. Subsequent MRI and blood tests confirmed initial diagnosis of malignant ovarian cancer (CAT 574). CAT biopsy done a week ago.

In complete shock, as I had no symptoms prior to this and whilst in hospital the medics kept saying I was too well and healthy to gave this disease! I am 58 and indeed eat well and exercise 3x a week plus walk loads every day.

Saw top consultant yesterday, but pathology not available yet. Apparently my disease is not presenting itself in the "normal" way because there is no abdominal fluid and there is extensive pelvic and paraaortic lymphadenopathy (I.e. Outside of abdominal cavity).

Trust me to be different! So it's a waiting game for pathology but expectation it's stage 3 or 4 (due to 2 undetermined specks in liver). Treatment plan being determined next week and probably 3 x carboplatin , then debulking, then more chemo

Family are great, as are friends but feel pretty lonely right now. Still haven't really wailed but guess this would help!?

In general I am trying to carry on as normal with treats and lots of cuddling granddaughter (7 weeks old), walking, partaking of wine, as allowed by medic team (goes well with Zomorph lol) a spa day yesterday and a pedicure today. And eating well too. I am finding it hard to relate how as of today I am walking about relatively unaffected but in a few week's time I become this cancer victim on the cancer treatment journey which is scary.

What helped you in these early days of waiting? Should I be doing loads of research? Any suggestions on how to be as well as possible for chemo? Consultant suggested eating lots of protein?

Look forward to hearing back and becoming on of the gang.

Gilly

32 Replies

Little advice but just wanted to acknowledge your post ! My mum was diagnosed after A&E admission with terrible pain. Like you she previously felt well, tho in retrospect she had been more tired and had permanent acid reflux. Unfortunately she deteriorated in hospital and became very weak. Her ascites (fluid) started whilst she was on the ward but she was on a general ward and it was 48 hours before they did CT scan & properly diagnosed. She was on fentanyl pain patches for about 6 months. It was 5 days as an inpatient before she saw a gynae-oncology surgeon who referred her to oncology. The oncology appointment then took 2 weeks and it was a further 2 weeks before chemo started (in total more than 5 weeks from diagnosis ).

That all sounds miserable, and I was a very worrying time. She was extremely poorly & literally felt like she was dying. We googled & before we found this site the prognosis seemed grim. We felt like we (and particularly she) were all in limbo until treatment started.

The good news is that 3 x carbo/taxol, suboptimal debulking (meaning most but not all removed) and a further 3 x carbo/taxol with added added Avastin seemed to do the trick. She is 22 months on from initial diagnosis and currently well !

I think its up to you whether you research. I did! It can be frightening but there are also positive stories out there. We looked at anti-inflammatory diets, the beneficial properties of ginger, gentle exercise etc. In terms of chemo, we were given a 24 hour hotline number for any concerns, raised temp etc. use it !! Also, I think a diary would help. By round 3 or 4 I could predict which day would be a bed day , an anxiety day and, yes, even a hyper day! I think it reduces anxiety to know they are all part of the cycle but will be different from person to person.

Enjoy your family & try to distract yourself in the meantime - easier said than done, I know, but good luck x

So sorry that you have the need to join us, but welcome to our support group. There is some fantastic advice here and everyone really knows just how it feels.

I think the worst part in the early stages is the not knowing and uncertainty. It almost feels like you're in a dream and that all will be well once you wake up. Sadly, that's not so, but I think once you start treatment then you can alter your mind set and focus on fighting the blighter. It's very hard for family and friends because they don't really appreciate what you are going through, especially as you are carrying on much as normal. If you look OK, you must be OK!

I know many people would Google for information, but I think it's better to get information from Consultant or Specialist Nurse which is specific to you rather than reading everyone elses horror stories.

With regards to preparing for chemo, be aware of the possible side effects and make sure you are as fit as possible at the outset. If you can prepare and freeze meals, you may it helpful if you don't feel like cooking (or maybe get hubby or partner if you have one) to improve their cookery skills!!

Overall, I think you just have to go with the flow. You will soon learn how the chemo affects you and how to deal with any side effects. Make sure you have contact numbers for advice if you need it, and don't be afraid to ask questions or admit to how you are feeling. It often helps to off load.

I wish you well for your treatment, and do continue to enjoy baby cuddles.

Ali x

GillyN profile image
GillyN in reply to Alikay

Thank you. I really appreciate your sound advice.

Hi Gilly,

Just wanted to say hello. The early days are certainly a rollercoaster ride of up and downs, for many mastering the skills of living in the moment trying not to think too far ahead and not googling. There are some good support sites Ovacome, Target Ovarian Cancer and Ovarian Cancer Action.

Dealing with chemo is very much an individual experience but more often then not you will find someone here who can share how they dealt with an issue if you have one.

One of the hardest things I found were the amount of well meaning family and friends telling me to be positive. Believe me you cannot be positive 24/7, 365days a year sometimes once in a while a good cry is fine. Let it all out ( for me that meant a few screams as well) then pull it all back and be determined again.

Good luck keep strong Kris Xx

GillyN profile image
GillyN in reply to peanut2

Thank you. Indeed I think it's time for a bit if indulgence and screams. X

Hi Gilly,

Your story sounds exactly the same as my mum back in March this year. Same age and symptoms e.g. no fluid and stage. You may want to read some of my posts, you will see my earlier ones were very scared and unsure and now I am full of knowledge and out the other side with my mum.

The journey is tough for you and everyone around you, however please please do not fear, we were all so scared but they can do so much and is great that they have caught it now.

My mum has now finished treatment 6 months later and we are all back to normal life again and she is back to work and doing our horses. My mum was diagnosed at stage 4 which is as worse as it can get and had spread to lymph nodes she had 3 chemo then surgery then 3 more chemo, she is now on Avastin which is a maintenance drug for a year. They told her that her age and how fit she was gave her the boost to fight it that she needed. They were confident from the start she would do well so honestly that is a massive positive for you being fit and healthy.

My advice is if your on the slimmer side to try and eat as much as you can now and during your treatment as my mum lost so much weight which made her weak. My mum was a size 8 but went down to a tiny 4-6 she has always been a bad eater anyway which didnt help, however if you have a more weight than that it should work in your favor with treatment. :)

Sending you lots of hugs xxxxx

GillyN profile image
GillyN in reply to Be-Positive

Thank you. This was lovely to read. And I'm pleased to hear that your mum is currently well. At the moment my appetite remains huge! So hopefully I shall have some fat stores as I go through treatment.

Thank you so much for your reply. Really appreciated.

Just keep on with the cuddles and definately the wine! my grandaughter was ten weeks when I was diagnosed last January. Mme Pinotage has been a great help!

Very nervious about my three month check on Monday as I have developed backache in the last couple of weeks. May be lifting very well fed grandaughter! All good wishes x

GillyN profile image
GillyN in reply to billieboo

Isn't it wonderful being a grandma! Indeed the cuddles are really uplifting.

Best wishes for your 3 month check. It's so frustrating that every little niggle becomes a concern.

Thank you so much for replying. I shall raise a glass to you tonight!

Please google Penny Brohn cancer care in Bristol. I was diagnosed a year ago and they have helped me live well through chemo and beyond. I have now done 3 residential courses there all completely free and have learnt so much on how to help myself. A truly inspirational place! Good luck and yes protein at all meals is crucial. I put on 2 stone during chemo with the steroids!

GillyN profile image
GillyN in reply to ccccompost

Thank you. This sounds very interesting, so I shall indeed look into this.

ccccompost profile image
ccccompost in reply to GillyN

I am so lucky to live 20 mins away😄 have been this morning😃

Hello. Tonnes of great advice given below. I have had 4 taxol/carbo and debulking. 2 more to go. All signs are good, markers down and classed as optimally debulked. I just need to build up weight and then I will be doing everything in my power to prevent reoccurence. I did and still do lots of research, sometimes scaring myself silly, but I feel much more informed about fighting this cancer head on. I have started juicing, trying to maintain a low gi diet, bad carbs have gone and cutting down on dairy. Everything that can be is organic and processed meats have in the main gone (the last 3 weeks don't count as I am trying to gain calories so have allowed myself to indulge in cheese and pork pies). Everyone is different, some women stick to conventional treatment only. I am looking at a more integrative approach focussing on diet, supplements and your mental wellbeing is so important. I am still working on this. Relaxation, meditation and complimentary therapies. Get down to your local Macmillan centre, my local centre allows you 6 free treatments. I have had reiki so far and am booked on an aromatherapy couse and cranial sacral therapy, they offer hair loss support clinics (my advice shave it as soon as it starts coming out, nothing worse than seeing your hair fallout in large clumps). Also ask about the Look Good,Feel Good Day - this is offered to all women going through treatment as a one off. Techniques for applying makeup and cleansing etc and you receive about £200 worth of freebies, bonus!

Glad you have found this site, it is amazing.

There is some really good info out there, I came across - Energy Grid website- finding your cancer cure- a basic guide for surviving cancer. Lots of good info. Chris woolams book, everything you need to know to beat cancer and the rainbow diet are good sources of info, as is The canceractive website. He has basically done the research for you. Lots of people have recommended Radical Remission to me which will be my next purchase. I feel by doing these things I am taking control and giving myself the best fighting chance. Knowledge is power!

The worst time is the waiting, nothing worse, just keep yourself as busy as possible.

You will find what works for you and will slowly get your head round the fact that you have cancer and as you do so will build up the strength to fight this horrible disease!

GillyN profile image
GillyN in reply to Leeds2015

Wow. A smorgasbord of really good information. I really appreciate you taking the time to send this. I shall look into the recommendations which will keep me busy whilst waiting. I am also filling my days with friends and treats. One day at a time is my dpthinking at the moment

Thanks so much..

Leeds2015 profile image
Leeds2015 in reply to GillyN

I am doing lots of other stuff too so I am a wealth of info, not sure if any of it is of any use or will make a blind bit of difference but lots of tips on all sorts of useful/useless info!

Hi Gilly,

I can't add much to all the wonderful advice above.

Sounds like you are doing just the right things to tide yourself over the uncertainty and waiting game. Keep in treating yourself and enjoying every day. Life is sweet in the present, let tomorrow look after itself.

Keep posting when you need to, even with things that seem trivial. There will always be someone that can can come up with a sage answer or point you in the right direction if needed.

Welcome to the club that none of us wanted to be members of but none of us would now like to be without.

Hope they sort things out quickly for you do that you can get on with it and start the eviction of your unwanted lodgers.

Sandra x

GillyN profile image
GillyN in reply to LittleSan

Thank you for this. Indeed it is one day and one step at a time. I love the idea of unwanted lodgers and shall make mine as temporary as possible!

Hi Gilly and welcome to our club, the one that none of us really wanted to belong to!

I was still working when going through investigations and that helped me as s I had to focus on other people rather than myself. It exhausted me though and I went straight to bed when I got home eazch night so not really recommended. I would stay off Google at present though. The ladies here are helpful and knowledgeable so ask away lol.

Chemotherapy gave me a metallic taste and eating fresh pineapple helped to take it away for a little while anyway. Ensure you keep your bowels moving and drink lots of water. Be kind to yourself, have a little walk each day if you're able to as well. Steer clear of big crowds too.

Good luck.

Ann x

GillyN profile image
GillyN in reply to thesilent1

Thank you Ann. I am self employed but under contract to other organisations so due to the uncertainty of treatment and effects I have pulled out for now. Though seriously thinking of starting the OU course I have always intended to do! Just investigating now. Though thinking that the morphine is probably dimming the little grey cells! And quite agree re keeping bowels moving, as constipation a nightmare.

Keep well yourself and thanks again.

Gilly

thesilent1 profile image
thesilent1 in reply to GillyN

Hi Gilly, I don't know whether others had this but I certainly did, a lapse in concentration span. I would hang fire on s8gning for a course yet until you see what you're like with chemo. Ann

Hi Gilly,

I've skimmed through all the other replies and I echo that this is the 'best club you wouldn't wish to belong to'...but now you are, everyone turns up trumps as always.

Advice given to me on initial diagnosis was "Now just put yourself first" from two close friends and also my daughter who is a doctor (respiratory reg. in London).

On recurrence, GP's advice "You concentrate on growing healthy cells..by trying not to lose weight (like a previous writer, I lost 2 stone in the first chemo of carboplatin + taxol) plus exercise well and rest well; I had to learn to do the latter properly! Meditation and mindfulness help me greatly on this and a dietitian helped me reduce weight loss the second op. & chemo & the regain soundly and steadily.

My daughter's advice as the second chemo finished, "Don't set targets, just notice trends."

And, finally from me, be kind and compassionate to yourself; this also took me sometime to learn but it now really works for me.

Warmest good luck,

Lesley

GillyN profile image
GillyN in reply to lesleysage

A thank you Lesley.

It's very hard when you are naturally a go getting control freak, always putting others first to sit back and just "be" but I have begun to do so and also shall be kind to myself. I have the Headspace App on my phone and it's great.

Keep well and best wishes.

Gilly

lesleysage profile image
lesleysage in reply to GillyN

Hi again, Gilly,

Sorry for the delayed reply but have been away for a couple of days at our daughters. I've had a quick look at Headspace - please can I be cheeky and ask if are you finding it worth the money?

Keep taking care, as well as keep exercising & resting as well as the meditation - all are helping me.

Warm wishes again, Lesley

GillyN profile image
GillyN in reply to lesleysage

Hi Lesley

It's less than £1 a week, so I think it is ....as long as you do use it, of course. However, you can sign up for 10 day's free trial and can keep using these If preferred. Overall it just gives you a directed meditation and there are plenty of other CDs and free downloads available. I also find Glenn Harold's relaxation tapes good and have just seen that he has a Heal Your Body download for a one off £3.99 so will be getting that one.

lesleysage profile image
lesleysage in reply to GillyN

Many thanks, Gilly,

More to explore - every little helps me to try and refine what challenges, what moves me forward and finally what settles into working for me on a daily basis....then a few weeks/months later my mind is drawn to explore other new things...and so it goes on. Until the cancer, I'd never chosen to explore in depth any issues around health, chemotherapy etc but these now emerges in my mind...especially during meditations.

Thanks again and hope today is a good day.

L x

Welcome to the gang, sorry you had to join us, but this is definitely the place to be. The advice and love is second to none. Ovacome helpline, Ruth, is wonderful, so was Leigh who I spoke to.

I found ginger biscuits to nibble helped with queasy feelings and ginger beer. I had Carboplatin as a single agent, admittedly not much of it, but did find the steroids took the edge of it.

It's such a shock having a diagnosis like this, but it is doable, listen to your body and be kind to yourself, plenty of water and rest. Good luck.

LA xx

GillyN profile image
GillyN in reply to Lily-Anne

Thank you Lily-Anne. I love ginger beer! So this is a great tip. As is drinking plenty of water. It has Ben suggested that coconut water is very hydrating so I'm drinking that too. It's very expensive £3.40 a litre) but I'm worth it (sic).

Gilly

Hi Gilly,

I was much like you. I was fairly healthy, always active. I initially thought I had a virus, was feeling a bit under the weather. I was getting winded really easy, couldn't walk across a parking lot with out feeling out of breath. Then I gained 7 pounds in 2 days. My GP's nurse didn't think it was anything concerning, but I decided to go to urgent care. They did chest x rays & EKG. They told me I had an enlarged heart & sent me to ER. There they walked me up & down the hall for more chest x rays. They then determined I had fluid around my heart. I had never spent the night in a hospital. I asked the cardiologist if he could give me diuretics & send me home. He said no. The next day I had the fluid drained; 900 cc's worth. The initial pathology report on the flap of skin came back clear; no cancer. However, a few hours later they came back & said the fluid had cancer cells. I was devastated. No one was with me at the hospital when they told me. Later that day I had a CT scan that found masses in the pelvic region. The following day I had a pelvic ultra sound. I had 3 golf ball size tumors on my right ovary. I started chemo 2/14/14 (Happy Valentines Day). Had surgery 5/13/14 & my final chemo 7/11/14. I was stage IV. I have since been NED. I have my next follow up appointment next Friday 11/13. (I hope that's not bad luck). I get anxious week or 2 before these things. Your friends & family will be there for you. I had/have an amazing support posse! Hang in there, you can do this!!

Hugs & good thoughts!!

Patty

Hi Gilly,

My Granson was 9 months when I was diagnosed and he pulled me through,I have a great family and friends,but no one knows how you feel but like minded people and you have had great advice,

My advice would be not to Google as there are a lot of scary things out there and my way of reasoning is that it is not your cancer and not what is happening to you,but people have been through it can offer practical advice from the front line!

Cut to the chase, I was horrendous August 2014,had my op and Chemo and am all good since April this year.

I live for the moment,do all I can,have my meltdowns,drink wine,go to lots of concerts and go abroad.

Just do all you are told to do and live as healthy as you can and try hard not to dwell, you are doing great and we are all with you xxx

Thank you for your reply. Much appreciated and glad to hear that you have been abroad. I was told to cancel my 2 booked holidays (Northern Lights in December and Antigua Jamuary), so knowing there could be the the opportunity to get away after all the horrid bits is motivational. In the meantime......

Carpe Diem.

You are not alone - I would suggest that you keep focusing in your family - I have had the debulking, hysterectomy and many many bouts of chemo- just be sure to ask for the best anti- nausea meds they have, put yourself first! Getting enough rest and exercise when you can is very helpful, family support or support from friends needs to be accepted - it is ok to depend on others! Ovarian Cancer sucks but it can be managed so hang tuff, be determined to beat it and above all be positive!

You are in my prayers

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