Still Confused?

[Lilacsandlavender]

Just updating since I was last here, I'm still very confused about all of this and would be so grateful for any advice or information that you may have for me....

I have now been informed that it is, in fact, the CT scan measurements that are correct, as apparently my cyst is quite high up in my pelvis so that the probe used in the ultrasound wouldn't have seen it as clearly as the CT scan as regards to measurements.

I'm not really understanding what they mean by "high up in the pelvis"?

Going by the CT scan the cyst is over 8cm now.

I have been told that it has a benign appearance both on the CT and ultrasound scan.

I have noticed over the past few months that I seem to be putting on weight and expanding a lot in my lower tummy particularly, the spare tyre that I have had for many years, is much bigger and "sits" on the tops of my legs, I've been told this is just weight gain and nothing to worry about?

My GP is going to write to a gynecologist for some advice re this cyst, she said that I may not need an appointment, they may just advice us? I would really like to get any information straight from the horses mouth, as it were, especially when dealing with this.

I'm no longer anemic now, which counts out any intestinal bleeding and I'm still of the belief that there is nothing wrong with my bowels, apart from the anemia I had no other symptoms at all, especially not of cancer, as second on the list is unexplained weight loss, I'm gaining it, not loosing it, I have none of the other symptoms either and I have never seen any blood loss from my bowels.

My liver is enlarged, is giving high readings for ALP and I have low platelets, only at 80 when they should be at least 140.

I have asked my GP to refer me to a new team at the hospital as I've suffered a few very negative experiences with my current consultant.

He was very rude to me last week when I saw him, he is fixed and obsessed with my bowel and when I explained that I'm not at all concerned about my bowel, but I am concerned about my ovarian cyst and the liver problems, I was shouted down and told "I'm only dealing with one problem at a time and it's your intestines that need investigating"

I have also let the hospital know of my experiences and they have apologised to me, but so far, for me, this has not been a helpful experience and much that I have learned, I've learned by researching myself which I really don't feel is acceptable in this day and age.

Thanking you in advance of any advise you kind ladies may be able to offer me.

[TrishLey]

Hi There,

I am sorry that you feel confused and frustrated. However it is good that you are taking control of the situation by asking to be referred to a new team. Have you done a transvaginal scan? That is what detected my Ovarian Cancer. The medical teams are there to help and treat you, that is their job. If you feel they are not doing this let them know. If you are anxious about your ovaries tell them this is causing you the greatest concern and you would like to rule out 100% a chance of Ovarian Cancer, then if it is your liver that concerns you next get that sorted. In my experience of Medical teams and that includes family and friends and myself, they do tend to treat one thing at a time and this can be infuriating.

Wishing you all the best,

x

Trish

[Lilacsandlavender in reply to TrishLey]

Hello Trish and thank you for your reply.

Yes things got a wee bit complicated really.

My ovarian cyst was found nearly 3 years ago, it was an incidental find whilst I was having a transvaginal ultrasound for post menopausal bleeding, it measured 5.7cm back then and was of a benign appearance, it was described by the consultant as this "The right ovary had a thin-walled 5.7cm bilocular avascular cyst with no suspicious features and no free fluid"

The consultant wasn't at all concerned about it, he checked my CA125, which was normal, and I had a followup transvaginal ultrasound about 3 Months later which showed that it hadn't changed at all and remained the same in size and appearance.

I literally put it to the back of my mind as it had never given me any problems re pain and I felt confident that all was well.

Moving on to the early Autumn of last year and I started to feel very unwell, I had the most awful indigestion, heartburn, gnawing pain upper back. I was investigated quickly as I was also found to be anemic which meant that I was loosing blood from somewhere, however, during an endoscopy nothing was found in my stomach at all and the biopsies taken came back normal.

I then saw a consultant gastroenterologist at the hospital and he ordered a CT scan. During that CT scan my ovarian cyst was picked up along with an enlarged liver. According to the CT scan the cyst now measures over 8cm.

I was absolutely petrified when I learned this.

I was quickly sent for a transvaginal ultrasound to have a look at the cyst. The lady doing the scan told me "this cyst hasn't changed"!? she said if it had got any bigger, it was very minimal.

I was like a dragon spitting fire! as I felt that I had been put through unnecessary fear and worry and because of that and another thing that had happened to me under this particular team, I put in a complaint to the local health trust.

The have now written and apologised to me. But in this letter, whilst they were investigating my complaint, the had a look at my CT scan results and the ultrasound results and have told me that it is the CT scan that is correct as my cyst is high up in my pelvis meaning that the probe used for the ultrasound wouldn't have picked it up as clearly as the CT scan.

So along with my continuing symptoms, apart from the anemia which is now resolved, I was quickly thrown back into fear and worry once again as this now means that my cyst has grown a fair bit.

I don't know what they mean by "high up in my pelvis" how can it be when the ovaries are very low, surely the cyst isn't that big that it would be showing high up?

I'm just finding this whole thing too much for me at the moment as I still don't know, nearly 5 Months down the line, what it is that is wrong with me and I'm petrified that something's not been picked up as I'm aware that time is of the essence with things like this.

It's probably benign, but just knowing that it's there and it's grown is causing me distress and I feel that I need to hear those words said to me in a definite way and not just "I don't think it's anything to worry about" as that's just not doing it for me now.

Best wishes

Mandy. x

[thesilent1]

Hi, I note that you complain of heartburn, indigestion and a gnawing pain in your back. Have you been checked for gallstones? These were my symptoms many many years ago, turned out I had stones and had to have operation. It can be very painful.

I did not lose any weight prior to my diagnosis of ovarian cancer. Not everybody loses weight!

If you are feeling unwell, you need to keep going back to your GP in order to get to the bottom of it.

Ann

[Lilacsandlavender in reply to thesilent1]

Hi there Ann and thank you for your reply.

I had my gallbladder out many years ago now, but I do understand what you're saying about it.

The reason that I mentioned the weight issue is because I'm being constantly asked by doctors whether I've lost any weight, having read a lot of information about cancer now, I'm really not sure why they seem so fixed on that, if I'm correct in what I've read, for some cancers it's a major symptom, but there are others where weight doesn't alter, and there are some where you can actually gain weight, one being ovarian cancer.

Best wishes

Mandy.

[Aemi]

Hi Lilacs,

I too have been back and forth to my GP with health problems and I agree with you that looking at just one thing doesn't tell the whole story. I felt as though they thought I was making it up for attention. Anyway after a crisis with bloating and digestive problems one of the doctors at our practise suddenly clicked what it was and referred me on to have tests with the hospital. I was diagnose with OV and had surgery shortly after. During the surgery cancer was discovered in my bowel so the cancer was removed and my bowel rejoined. So far no other treatment has been necessary but now they think the cancer originated in my bowel.

This may be why they want to look there first. I hope my story hasn't frightened you and wish you well in finding out what's happening.

Kind regards

Aemi x

[Aemi in reply to Aemi]

Ps. I had no weight loss either

[Lilacsandlavender in reply to Aemi]

Hi there Aemi and thank you for your reply.

Your story hasn't frightened me hun, so no worries.

I'm sorry to hear of your diagnoses, but happy for you that no other treatment has been needed and, forever, let that continue hun.

I have had this terrible feeling of "impending doom" and a feeling that I know that something is very wrong for several months now.

Hopefully before long now, I shall get some answers and I will update and let you know what happens.

Best wishes

Mandy. x

[Whippit]

I'm sorry to read you're having so much trouble getting to the crux of what's wrong. I don't think I'd appreciate a cyst in my pelvis that is 8 cm and has grown since a previous scan.

I do think that it's problematic when patients have a lot of seemingly unrelated medical difficulties but it shouldn't result in no action at all by your team. I wonder whether it's a good idea to refer yourself to another centre for a second opinion?

I just hope you can get all this sorted out very soon as it must be playing on your mind and not good for your general wellbeing and you could do without that.

Sending very best wishes, Annie

[Lilacsandlavender in reply to Whippit]

Hello Annie, thank you for your reply.

Yes this is the biggest problem that I seem to have, with having several things going on at once and worse still, being told that they are most likely not linked.

We got off to a really bad start with the current team, I'm under the care of a gastroenterologist. His clinic at my local hospital is appalling! Both times that I have been they have been running over an hour late with resulted, both times, in me feeling like I was being rushed and leaving the hospital none the wiser than I was before I got there!

I have asked my GP to please refer me to someone else but if that doesn't happen quickly enough, I will indeed look at going to other hospitals.

I couldn't believe what happened at my first appointment there, I saw the consultants senior registrar who arranged for me to have an endoscopy to look in my stomach, on examination, she discovered that my liver is enlarged but failed to say anything else about it and her words to me were "if these tests come back clear, we probably wont need to see you again" I looked at her very puzzled, which she picked up on, and she then replied with "we may never find out what the problem is, sometimes we don't"??!!!

So is she seriously telling me that after 2 tests, one being to look into my stomach and the other a full blood count, that they can then determine that they wont ever find out what is wrong??!!

I will keep you updated about what happens.

Best wishes.

Mandy. x

[IrishMollyO]

My heart goes out to you Lilac. It is so difficult to deal with unhelpful doctors or nurses when one is diagnosed with such a devastating disease. It is a time that you need care , compassion and sympathy . I agree it is frustrating trying to persuade the experts how you feel yourself as you know your own body. I have had some experience of this myself and it is very upsetting. Some medics just have a bad bedside manner but of course they are highly trained and we must trust that 99 per cent of them are extremely skilled and know their jobs. It may be just a personality thing and if moving to a new team will be more beneficial then I wish you all the best with that and I hope it brings you peace of mind. There was just one thing you said that I picked up on and I am not sure if it is relevant in your case as I am new on this site and don't know what your diagnosis is. You mentioned unexplained weight loss as a symptom of Ovarian cancer. In fact unexplained weight gain is also a symptom as it was in my case when diagnosed with Primary Peritoneal cancer which is similar but rarer than OC. i hope I have been of some little help and that I haven't confused you more. Meanwhile keep asking questions and stay hopeful

[Lilacsandlavender in reply to IrishMollyO]

Hello Molly and thank you for your reply.

I think that what has upset me the most in all of this is that I did have complete trust in doctors and was very happy with our local hospital for many years.

I think the problem now is that 2 health trusts have now merged into one which means that you never know which hospital you're going to be seen at. They have an all singing and all dancing brand new, state of the art hospital which has been built in the next town to me.

When I looked online at the reviews of patients since the merge and the new hospital, I was taken aback! Very negative experiences from many different departments at both of the hospitals seemed to be the norm. Of course, we do have to bare in mind that, unfortunately, people who have good experiences tend not to leave reviews so it can be a little one sided.

However this experience has shaken me to the core! I broke down sobbing when I was telling my GP what had happened to me and explained to her that I didn't know which doctor I'm supposed to trust now, it really had a major impact on me.

I will keep you updated on what happens with me.

Best wishes.

Mandy. x

[IrishMollyO in reply to Lilacsandlavender]

Hi Mandy

I am so sorry that you are so upset but I cannot compare experiences in many ways as I don't live in the UK. In fact only about 11 women a year are diagnosed with PPC in Ireland so some doctors may never have even come across it . This is why I was so glad to have this website suggested to me as I felt with a larger population in the the UK I could come across more people with my condition.

I think what you said about only people with negative comments posting their comments is probably quite true but there are also good news stories out there I am sure and I have read some of them. Up to now I thought we were the forgotten people and had quite a few angry conversations with my team and anyone who cared to listen about the lack of progress in early diagnosis of certain women's cancers such as OC and PPC etc. We do need to keep shouting from the rooftops and maybe in the future women wont have to wait until they reach stage 3 or 4 before they are confronted with this dreaded diagnosis. Everyone's comments good or bad is helping to promote knowledge of these diseases and this can only be a good thing.

Mandy my wish and prayer for you is that from now on you will only have positive experiences as you progress through your treatment. Take care and let us know how you get on

[Lilacsandlavender]

I just want to say a massive thank you for your support and advice, you are a truly lovely bunch of Ladies. I truly appreciate the time and effort that you give, even when facing your own health problems, to help other people.

Today is one of my really not so good days, I'm feeling extremely bloated and uncomfortable. I attempted to eat my dinner, which I really didn't fancy at all, and now feel more uncomfortable.

May I please ask you all another question please.

Have any of you experienced a feeling that your digestive tract/bowel has just stopped moving? I'm having days when it feels just like that, today being one of them, it's like it's all just downed tools and gone on strike! I can't hear or feel any movements. I have told my GP and the hospital about this symptom, but am none the wiser really?

Many thanks to you all.

Best wishes.

Mandy. x

[naomi88 in reply to Lilacsandlavender]

Yes, stagnant bowels are no surprise as you are very stressed and emotionally involved.

Moving the bowels 2 times a day it is very important for the natural detoxification processes. Otherwise one becomes like a blocked sewerage. Just imagine that, the liver will have an immense work to do as the toxins come back to it again and again. Having such a load won't be able to do other jobs like brake up the hormones (the female hormones and the ones caused by emotions) so it will let them loose in the body. Excess estrogen will make things grow. And voila, tumors/cysts grow. Hope it makes sense to you this very short limited explanation.

What I think you would need in this time of turmoil, if possible, is to disconnect from the miss-happenings of the medical system no matter how much you feel the injustices. At the end of the day it is injurious to you, and first priority now, it is you. All the energies must be directed towards you getting better. The system is in no hurry to change anyway, it will not consider that you have educated yourself and some things you think them out and can't swallow anything put to you.

First you will need to calm your nerves with some nervine tonics herb teas (Motherwort, Skullcap).

Then 30 min before every meal drink some hepato-protective teas for liver and digestion (Dandelion, St.Marys Thistle, Gentian, Ginger, Peppermint and Licorice) to aid the liver in its work load. For the liver to be able to detox it needs easy to assimilate proteins that would come from drinking wheat-grass juice, it exist in powder format as well that is dissolved in water.

At night 2 hours after last meal drink a tea that will help with the bowel elimination (Cascara Sagrada, Buckthorn, Barberry Bark, Fennel, Red raspberry leaf, Turkey Rhubarb, Ginger - any or a combination of them depending of availability).

Red raspberry and Motherwort I would make them a must daily tea for the female organ problems.

I found that drinking the 2 cups of clear carrot juice with celery , green apple and bit of beetroot 2 hours away from the meals will have same effect on the bowels as the teas. Also I found that introducing cayenne with the food works as well towards that end. Other dietary needs would be wheatgerm oil.

Hope this short overview helps you with the self management. I think will lead you to take your mind away from what others do towards what you are doing for yourself. It will reduce the level of frustration and increase your confidence and makes you feel better physically and emotionally.

[ScardyCat40]

I actually gained weight when I was trying to lose weight and I was feeling pretty uncomfortable. The weight gain was caused by a build up of fluid in my abdomen and I looked slightly pregnant.

Lots of things can cause your liver to enlarge such as fatty liver and with some cancers such as liver cancer weight loss is a red flag.

I think going for a second opinion would be a good idea but the difficulty is going to be which specialist do you want to be referred to? As you have had a cyst in your pelvis that has grown and because you are here I assume you are worried about ovarian cancer? If that is the case you might want to be ask to be referred to a gynaecologist oncologist where abouts in the UK do you live? If there a specialist cancer centre near you?