So, the CT scan has confirmed the large mass (at least 28cm x 28cm x 20cm) which they now believe appears to arise out of my left ovary (they couldn't see them at all on the ultrasound). Unfortunately, they still can't say definitively if it is, or is not cancerous. It definitely isn't a simple, but extra large cyst as it has chambers throughout its structure. Apparently this means that it could be, or could not be malignant and they will not know until they perform surgery. They can't see that there has been any spread, which is good, but I do have fluid around my liver and they aren't sure what significance that has. Great, I thought, well at least now they will give me a quick date for surgery to get me out of the constant pain and discomfort...NO! Not that simple!
The consultant is going to discuss my CT scan in depth at this Friday's Multi Disciplinary Team meeting. She imagines that at that point the recommendation will be that everything is forwarded to St James' to the centre of excellence: They will then discuss it at their MDT meeting next Wednesday and I will then find out more from that point about when surgery is to take place. She says that she is going to stress to them that I am in a lot of pain and discomfort so that hopefully they can expedite events, however there is no guarantee. In the meantime I am to speak to my doctors to get some heavier duty pain meds and sleeping aids. It's strange - you imagine that if something like this was ever to be found in your or yours that everything would be dealt with really quickly in this day and age - I am finding out, to my cost, that this is far from the truth. A lesson in patience, I guess.
Additionally - and at this point you can be forgiven for laughing inappropriately as that is what I did when she told me - the CT scan has shown up that I have a suspicious area in my breast! Seriously. I kid you not.
She is now putting a referral in to the breast clinic as urgent and I have to go and have an ultra-sound and mammogram to check that this isn't something sinister!!!!
Please excuse the excess of exclamation marks, however I feel that if there was ever an excuse for overuse of punctuation for effect, I am allowed it now!!!!!!!!!!!!
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marthasperson
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I am so sorry you find yourself in this situation, it sounds exactly like the experience I had in 2013, my Ca125 was raised, I was told by GP highly likely to be ovarian cancer, I didn't even know they tested me for that! I was then sent for an urgent ultrasound, where I was told 90% sure not cancer, but would have CT just to be sure. Had the CT scan, didn't hear anything for over three weeks, in the end, I chased it up. I was then sent to see Gyne Onc; I didn't even know that until I seen his title on his desk. He said they didn't know if it was cancer, they couldn't say until after the Op; he did say there was no spread. He then said he was going on holiday, so couldn't fit me in for another four weeks! It was May when first suspected, and I didn't have Op until August! Those were the worst three months of this whole experience, not knowing what is going on is torture.
Unfortunately, mine was cancer the surgeon knew as soon as he operated and told me when I woke up. It was 2C, so it was early stage but on the move, I often wonder if the three-month delay made a difference to the stage. I had 18 weekly chemos and all fine so far.
I'm really hoping that yours is not cancer, I'm sure there is some timescale in place if they suspect cancer so hopefully they won't keep you waiting too long. Mine was also very large and painful, I don't think the size makes so much difference, it's whether it has spread that is the key. It's good that they can't see anything anywhere else. My sister also had a similar experience and hers was benign
Everything crossed that you get your op soon and feel more comfortable, and the cyst is benign, and that the breast clinic does'nt find any cause for concern. You have got a lot to deal with at the moment your head must be in a spin...
Oh dear, frustrating to still not know anything at this point after waiting.
It was the same for me. Until they know 100% that it is or isn't cancer they will not say.
I had a biopsy of the tumours after my ct scan to say one way or the other so it is quite a lot of waiting about before you know for definite.
It took about 4 weeks or so to confirm it was cancer and about 5 weeks after diagnosis before my chemo started and I was like why?? Get this treated asap. 2 months of nothing. Was like a lifetime of waiting.
You do know now though that you have to have an operation to have it removed so you are moving in the right direction. Even at this stage if they told you it was cancer the outcome would still probably be the same, to operate, so at least you have been put to have this done.
I am waiting for my surgery approx 6 weeks but it is ultra radical not standard so I would have thought you would not be waiting nearly as long.
This disease unfortunately takes you one step at a time and is a roller coaster of emotions.
When they told me about my tumours I decided it was cancer and prepared myself for the worst, in the hope that if it wasn't what a bonus that would be. It wasn't such a shock when they then confirmed it. I guess I already knew.
You just have to think nothing you can do about any of this now, the tumour is there and the professionals need to deal with it.
One day at a time. Try not to worry.
It's also positive that they are checking your breast for any signs of anything. If it helps I too had a lump under my armpit, but it turned out to be nothing. Probably to do with hormones from your ovaries?? Best to get it checked though. Another worry I know, but the roller coaster continues.
I'm sorry I can't give you any answers, but if any of it does turn out to be cancer, you will deal with it. Look at all the inspirational women on this site who have been through it and come out the other side even stronger.
I know this feels like slow torture of the worst kind. Your team are on it though and what they are doing is going through a process to get you the best possible treatment for you... And when you think about it you wouldn't want them to gaily start doing something which turns out to be the wrong approach ..potentially making things worse.
i know it's really hard...you just want to get things sorted. Xxxx Lyndall
Thank you for your kind words, Lyndall. I know you are right, I have just been getting really frustrated with myself as, like many of the other ladies, I am usually in a very busy work environment with long days and a lot of people relying on me. To go from that one day to suddenly being in a great deal of pain and discomfort and unable to even function properly in life, let alone being able to work the next has been hard to adjust to. I am feeling a little more upbeat today and have felt quite good having got much better rest since the pain meds were changed to tramadol. Because of this I have been able to do some planning and e-mailing to do with work in the last couple of hours as I could focus for once; Therefore I am feeling a little less useless
It's an interesting journey this, isn't it!
marthaperson, stop feeling useless, you are beating yourself up already. This is a huge worry on your shoulders and it is okay to be upset. It is a wait and a half but the MDT decide what the best options are for you. So its just wait and see. I am glad the tramadol are working for you so at least your pain is gone and hopefully you will get some sleep. Try and do something nice in the next week for yourself, you are worth it and it takes your mind off the unbearable. Is there a Cancer Support Centre near you and if so, do go and speak to someone. Sometimes its harder to speak to a family member and easier to speak on the forum or to a stranger. Ruth the Ovacome nurse is also here to help. Another idea would be to see if there is a gynae liason nurse you can meet in the meantime to have a chat about things. Be kind to yourself and sending you a gentle hug
Sorry to hear what you've been going through and that you do not have a definite diagnosis. At least they may have found the breast problem earlier than would have been the case without the CT scan. Inhofe you get some answers, and treatment, soon.
Hi, it is good practice for our results to be discussed at an MDT. I would also suggest that referral to St James' is better for you, as treatment at a Centre of Excellence is much more reassuring then at a local hospital. Don't worry though a few weeks will not make any difference to your outcome.
I do hope everything is OK with your breast. Hopefully it will just be a simple cyst.
Find something nice to do while you wait, a few trips out for coffee and cake, a trip to the movies, go to the beach and have a walk along the shore, the sound of the waves can be very relaxing.
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