2 Solid tumours

[diamondhearts]

Ive been diagonosed with two solid tumours one where the right ovary was with no evidence of ovary in sight and the second is cystic with a solid component. I have to wait another 10 days for the gynae oncolgist appointment Ive had back pain for 18 months bloating and increase in weight since september 2012, urine frequency, constipation, gas and belching since christmas. I am so frightened x

[Hidden]

I am sorry you have this worry and wait, you should be put on a fast track for more investigation perhaps you should ring your GP and tell her this so she could speed things up,

If you want to ring the Ovacome helpline and speak to Ruth Payne tel [phone] she could advise you on the best way forward.

Meanwhile I welcome you to the club that no one wants to join... best wishes love x G x

[diamondhearts]

Hi I am already on the fast track this was the earliest they could fit me in I keep reading research articles and it appears its not a good sign that the right ovary cannot be seen and is completely solid I know I should not read up on the subject and I am trying to keep busy by continuing with the gym my employment and social events but im not eating or sleeping, the odd glass of wine is not even helping. I am the type of person who copes much better knowing everything there is to know x

[Hidden]

I know its hard but try and not worry too much, they will stage your disease and fingers crossed if its stage 2 and only confined to the ovaries then surgery and some chemo to mop things up may be all that is needed. Stay strong and fingers crossed all goes well with your appt. X

[diamondhearts in reply to Hidden]

Thank you for your kind words I cant help reading and worrying its such a vicious cycle. I have been having an hour or two on average sleep more or less every day since february but on occassion I have slept for a fair few hours and then still slept all night long. I am a former nurse (now a self employed lawyer) who was used to thriving on approxiately 6-7 hours sleep daily, x

[Hidden]

I understand how you feel. Two thoughts: unless you've had a CA125 test done with a high result, you have no way of knowing whether the cysts are cancer. (Even then you would only be guessing - CA125 can be misleading.) Complex cysts that look highly suspicious on a scan can and often do turn out to be benign. Hopefully this will be the case for you, but there is no way of being sure until you've had surgery and the pathology report is done.

Second, most important, please go to your GP and get something to help you sleep. There is nothing wrong at all with floating through this intensely stressful time on a cloud of lorazepam, or whatever works for you. Worrying and fretting over something you read on the internet, at this stage, does no good at all.

Please let us know how you get on. Cx

[diamondhearts]

Thanks. Ca125 was 20 ultrasound (transvaginal) showed no right ovary tumour measuring 9cm left ovary only partially visible with 5 cm tumour cystic appearance with 3xm solid component. I had total hysterectomy in 2000 for fibroids aged 29 this was with complications resulting in peritonitis and septacaemia, no problems until back ache and then other symptoms listed above I can't take any sedative type medication as I'm still trying to go to work

Thank you for the information x

[Hidden]

Hello diamondhearts,

I know full well how you are feeling right now, but it might not be as bad as you are anticipating when you've been seen by your oncologist....just a word of advice, don't do much exercising before you have your op.....this is what I was advised by my oncologist

My thoughts are with you right now

Luanna x

[diamondhearts]

Oh really why is this I train 6 days a week walking on treadmill spinning and rowing then just some crunches and small hand weights for tone????

I would have thought this would enable me to recover better from surgery????

x

[Hidden]

It's just that before you have the surgery they warn against exercising....I believe it's to guard against the cysts from rupturing...after you've recovered from your surgery you'll have loads of time to catch up I'm sure.

Luanna x

[charlie12]

Hi Diamond

Welcome and so sorry that you are going through this.

Please , as the other ladies have said, be aware that imaging is just a guide to what is inside you. Regardless of how many super duper tests you have the only certain way is for the masses to be removed and examined by a pathologist. However the fact that your Ca 125 is so low is a very positive sign .

Also please do check that it is still safe for you to exercise. If your made a are cancerous the very last thing you want is for their contents to swish around your little insides. I have been on these boards for a few years and have heard several cases where cysts have burst and have then been found to be cancerous . You may need chemo if this happens , so do please check. These will be out of you soon you only get one chance to recover. I was also super fit before my operation and can now do all I could do before and more.

Take care

Love

Charlie xxx

[wendydee]

Hi Diamond!

I completely understand the worry of waiting, I can also understand the wish to keep on exercising. I would check, though, if the sort of exercise you're doing is the best way of preparing for an op. check on the blogs page, using the search box, to get some hints on preparing for an op. I know you've been through a previous op, but these may help. The hint about ringing Ruth is also good advice, she will reassure you, she has been there....As others have said, you won't know what's going on until the oncologist gets the histology reports back. The process us all explained on the Ovacome website ovacome.org.uk, there is loads of useful info on there. Try not to let your mind run away with you...you don't know yet. i found tgat when I knew what I was up against, it was easier to cope and get my head around the situation. Whatever happens, we'll be there with you, whenever you need an answer, an opinion, some reassurance. Let us know how you get on.

Love Wendy xx

[diamondhearts]

Ladies thank you so very much. I did take heed of your advise regarding exercise and took thinks very very slowly

xxx

[Hidden]

Dear Diamondhearts

You must be bloody terrified, I know I was too. We all understand and you can be sure that whatever happens and if this turns out to be cancer, there is a group of people here who will support and help you right through. This first bit is terribly hard, but be strong now and it will help you face whatever comes. Thorough investigation is essential and you must must must not terrify yourself with partial knowledge from the net. You cannot diagnose, you cannot guess and you cannot try to second guess what's going on. Please focus on calming yourself and yes, as above, take it very very easy on your body. Later, once you know, then that's the time for self education. After the op is the time for going back to exercise -- but be aware it must be some time after, and focus on getting comfortable with that. I am in better shape now than before I was diagnosed last July -- all is not lost, I promise. Get better first.

Love

Sue

Xxx

[MargaretJ]

Fear is the worst thing!

I had your sort of symptoms for 4 years before I was diagnosed. The discovery of tumours and the diagnosis produced gut wrenching fear but I am nothing if not a bolshie old cow! I dredged up the worst expletives learned while on break duty outside the boys' toilets and said "FU cancer". I have had three lots of chemo, two ops (one resulting in an irreversible colostomy) and developed stroid induced diabetes and, subsequently, an unconnected primary in my left breast which was removed with a lumpectomy and lymph node removal in January and I have just finished radio therapy. I ache all over, have extreme fatigue, had excruciating sciatica last summer (thankfully now bearable) but I will not let this B win! The OC is in remission at the moment (though I am experiencing some symptoms there is nothing palpable at present). I get checked every 3 months and if you want to know how my life is affected!

I am 72, divorced and live alone. I have just got back from a week in Devon with my grandsons, I went to a Jazz concert and 3 operas last week. At the week end I made fruit cake and date and walnut loaf for a committee meeting here on this Thursday, I was out for a meal at a pub with friends last night; at the theatre tonight; meeting here tomorrow; committee meeting on Friday night; driving over to Wallasey (about 2 hours) on Saturday to see my sister, who has just had a tripple by-pass, and coming back on Tuesday for my Slimming World weigh in. I have my weight coming down (2 1/2 stones off in 18 months) my diabetes is under control without drugs and, general aches (which could just be age) excepted I am doing fine. It will be 4 years on 2nd Sept since my GP said those awful words " I think you have a tumour"!

The point of this? Do not give in! See the good things, enjoy every day, do not let this b****r win by taking the joy and pleasure out of the time you have left and do not waste time worrying about how much time there is! Not easy I know but none of us knows how long we have! My younger (by 6 years) sister has just had a massive heart attack, my best friend has Parkinsons, another highly intelligent friend had a stroke five years ago and lost her language and ability to read, her death last year was a blessed release, my father and father in law both had dementia in their latter years! I would not swap places with any of them! I can drive, I do exercises, I plan my days to allow for the exhaustion, I love life and I enjoy it!

This is not intended to be braggadocio but, I hope, meant to encourage you to remember that cancer is just a word and that there are worse things to have. Statistics will tell you nothing about your individual prognosis and thinking positively does, in the opinion of my oncologists, have a positive effect on the quality of our lives and our chances of being in the 5 year plus survivors group!

Personally I am living with cancer not dying from it! Life, after all, is a sexually transmitted terminal condition! Mind you I am a control freak! LOL!

With luck we will get some clear nights and the Northern Lights might even be visible in York! Well I said I think positive! LOL!

Be of good cheer and, if you have faith in another being (which I do not) may it help you. Meanwhile positive thoughts and vibes from me, as a bolshie old cow giving OC the finger! I may have it but it is not going to take away my independence!

Love and good cheer!

Margaret! Xxxxx

[diamondhearts in reply to MargaretJ]

Wow. You are so very inspiring to me. I've a positive outlook and I am a very tough lady. Thank you for your words of wisdom x

[MargaretJ]

Ps!

For exercise after the op try aquarobics! I went back about 3 months after my first op and built up gradually. Gentle cycling and walking are also passed AOK by my gynae surgeon but all after the op. exercise in water is good because it puts less strain on the weak area of the scar. They told me that it takes over a year to recover from major surgery and I am currently waiting to be sure that the colostomy ( done in December 2011) will not misbehave itself before getting back in the pool and, when the weather improves I shall be back on my bike, much better than spinning as there is less strain on my spine and my (double) scar with the risk of hernia that that would pose! I currently do exercises on my arm and on a gym ball every morning!

M

[Madz]

Hi Diamondhearts

I can't surpass the awesome Margaret - heed her words as everything she says above is so true. None of us know what is round the corner and we are all in the same position as everyone else on the planet, until surgery you won't actually have a definitive diagnosis and until then save your worries for another day and take all the positive vibes from all your friends on here and remember to live as if cancer is nothing, with all the hope in the world that for you that is exactly what it is.

Much love Amanda x

[diamondhearts in reply to Madz]

Thank you. I know and understand that even despite the appearance of the tumours they may still be benign it's just the dreaded fear. This time in 7 days I shall know or have more of an indication as to what I am dealing with. I just want them removed. I can't find anything that states whether or not mine are large or small in comparison. Any thoughts very much appreciated x

[diamondhearts]

Thank you to everyone who has taken the time to support and guide me through this highly emotive chapter in my life. I have taken huge notice of all the advice and indeed acted upon it. I am keeping myself very busy for the next 7 days and now steering clear of the medical research papers I feel as though I know all the different benign and malignant tumours out there

I am inspired by you all and I genuinely appreciate the time and comments you have made to reassure me xxx

[charlie12]

Hi again

Great to hear that we are being of some help.

My understanding is that size does not necessarily correlate to degree of danger, treatment required, future prognosis etc. . I had a mucinous borderline tumour which was up to 20 cm ( at the time I was a size 8 !) . This type of tumour tends to get very big with all the "stuff" in it , but I did not need chemo as it was not ( yet) invasive. I am fine now by the way and fingers crossed you will be too.

As a general rule anything greater that 5 cms ish needs to be removed. Do please bear in mind that the size quoted is really just an estimate, other bits, including scar tissue can sit above below or behind the cyst.

You are very young in the scheme of things, extremely fit and removing these should be less of a big deal that a hysterectomy.

As you say just try to stay really busy, have lots of treats and the wek will be over soon.

Love

Charlie xxx

[diamondhearts]

Awwww thank you so very much. I read that the larger the tumour is the more likely it is to be benign xxx

[Langara]

Hi

In january this year, following an ultrasound scan and a CT scan, I was diagnosed with a 10cm complex ovarian tumour. I was warned that in all probability the tumour was cancerous, even though my CA 125 was just 35 (top end of normal). Just as you are doing now I went through a living nightmare, scrawling through every web site I could find and filling my head with an overload of information. Early in March I had a hysterectomy, removing everything that could be removed, including appendix and omentum as the tumour had adhered itself to both. It had also stuck to my bowel, but my surgeon safely removed it without any damage to the bowel. The tumour was also from my fallopian tube not the ovary

When the histology report came back a week later it showed that the tumour was actually 8cm not 10, was solid not complex and thankfully it was benign.

My point it that any scan, as I have since been told, is at best only 80% accurate and as such what they show can be misread.

Let me assure you that you have found the best site here, and a group of ladies who are marvellous beyond words. They helped me through some of the most testing weeks of my life. My admiration for them is beyond bounds as they bravely bear the difficulties cancer has thrust upon them.

I pray that, like mine, your tumours also prove to be benign, .

[wendydee]

Margaret, you are a real treasure We knew that, of course.

As for the wait, Diamondhearts, try to plan a treat a day that you can really concentrate on enjoying. There is a good website freemindfulness.org.uk if you like the idea of mind over matter, it is quite helpful! If, like me,you have a borderline tumour or a low grade, or benign tumour, you may well come through this with a smile at the end of the experience. It's not uncommon to find women on here who have found new delights in life after the initial awfulness of fear, diagnosis and worries about treatment.

We will all be here, willing you on,supporting you and waiting to see what happens

Love Wendy xx

[diamondhearts]

I am appreciative of all the guidance and I thank each and every one of you. Today however I'm not so positive. I just need to know. I'm anxious about the surgery of course I am. My past history demonstrates that surgery and I don't mix. I am a single mum and my youngest is sitting her GCSE's. I'm so worried. I can't eat anything at all xxx

[diamondhearts]

I had a lot of pain in lower abdomen last night and lower abdomen is now feeling numb? Any thoughts on what this could be due to x