We got the scan results today. The Oncologist said, "the results were difficult to interpret as usual - we say this every time you come don't we?" Well, yes, I suppose she does! The results showed miniscule growth on all three tumours. We have been thinking that there were two tumours, but my daughter reminded me that when they left the (benign) tumours behind, they did say it was three, but two of them had practically joined together, to make it look like one. I do vaguely remember this. The last few times the concern has been for the tumour on the bowel because that is the biggest of the three and the other one (or two) was not mentioned. Now it seems there is a tiny bit of growth there too. The dr is talking millimetres - about 1millimetre on the two tiny tumours and a maximum of 2 millimetres on the biggest tumour.
Apparently my daughter slipped through the net and wasn't discussed at the MDT meeting last Tuesday,so she will be discussed at next Tuesday's meeting, with the team at RM Chelsea. Her blood results were all normal.
Shehad been feeling horribly unwell and extremely tired and experiencing a fair amount of pain. This we mentioned to the Oncologist who gave her a thorough examination. She isn't too concerned because although her symptoms are associated with ov ca (bad low back pain and bad constipation), they are not uncommon for other reasons and so they are being treated with a prescribed medicine. The Oncologist says she is not too concerned in the light of the scan showing nothing new and not enough growth on the tumours to cause the pain and discomfort my daughter is experiencing. If things do not improve within a couple of weeks, she has been told she must go and see our GP.
We are not expecting any change in the current treatment and the next MRI is in three months time, with a follow up appointment the next week.
Thank you to those who prayed and thought about my daughter and sent good wishes, much appreciated.
With love, Honey xxxxxxxxxxxx
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Honey3
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I am so so sorry that your daughter is in so much pain, I am getting madder by the minute that they hadn't discussed her, and it must be so frustrating for you all, I think even though there isn't much change, it is a very worrying situation for you... I do feel for you and my thoughts and prayers are with you.
Adding to what Gwen has just said - my thoughts too honey, sending you one massive hug xxx
Dear Honey
How frustrating for you, you want clearer information. Maybe the MDT meeting will help the oncologist interpret the scan with fresh eyes. Not a satifactory situation. And it doesn't really sort out what your daughter is suffering now. I think I would be inclined to see your GP earlier and even ask for a 2nd opinion.
On the whole the NHS is great but there are some who let us down when we are vulnerable.
This might sound really stupid Gwyn, but it didn't occur to me to feel angry that my daughter had not been discussed, until late last night! I think you just sit there and try to take in everything that is being said and the full impact doesn't hit you until later! I am angry and we WILL be seeing our wonderful GP if the symptoms haven't improved big time in a few DAYS, not two weeks. He is the one who recognised that she had a cyst on her ovary when it had been missed by A & E who said it was all too vague because my daughter was complaining of pain all over her abdomen (Cyst was the size of a melon, or a 20 week pregnancy. I'm not jolly surprised she hurt all over, it was pressing on just about every organ - the surgeon said, "Think Marks and Spencer's Melon"!!). Then another dr dismissed the pain as "a virus"!!!! The A & E trip still makes me cross, just thinking about it, because it was implied that she was making a fuss about nothing and I felt like saying "oh, well of course, and I had nothing better to do than to let my daughter wake me up just before midnight and drag me here on her idea of a jolly, to wait until 5am until we had been seen and then go home again!!!!" PAH!
We have had excellent care from The Royal Marsden, though they haven't always got it right in terms of organisation and co-ordinating things so that ALL of the information is there when we get there and we did have a couple of treks up there when a phone call would have done and we said so. Their response was that they prefer face to face and I can understand that.
Don't worry ladies, I feel fight like a tiger on my daughter's behalf, if need be!
Thank you for the kind words, advice and hugs. Honey XXXXXXXXX <3 <3
I do know what you mean about A&E I went once with very bad pain in the middle of the night.. it turned out at the time that I had a very large gall stone.. my husband couldn't stand me being awake every night in terrible pain...so insisted in taking me to the hospital... they treated me as though I was having them on... sent me away and said "if you feel a little pain take a tablet" LITTLE !!... I was climbing the walls in pain... they didn't even give me a diagnosis as if we would go to the A&E in the middle of the night for nothing..Doink!! ..another occasion my son had swallowed his brace.. we searched in his bed.. not there....they treated him really offhand and after they gave him an X-Ray they realised he had swallowed it...haha!.. we laugh about it now... but we didn't then lol
I am thinking of you and your daughter and hoping that the MDT meeting comes up with a way of sorting out the pain.They surely can't leave things as they are.
So sorry to read that you have had to wait again before the MDT meeting will discuss your daughters case. My daughter always gets a similar response from the doctors in as much as they always say 'you are such an unusual case, we don't have a clear picture for you'. This is really not what we want to hear!
I would be inclined to give the hospital a call soon after Tuesday and ask if the MDT panel discussed your daughter. Maybe you have a nurse specialist assigned who can help with this. I know that MDT is a good thing and I am reassured that a group of specialists discussing treatment will be the best thing for us. But again, so sorry that they didn't do this last week. So frustrating. I know that you will keep on to them and make sure they help your daughter.
Thank you bluebee. I think the Oncologist will ring us. If we don't hear by the end of the week, I will ring her.
Both my daughter and I are wondering how long she can continue on treatment that isn't actually working? It's played down with the comment, "we're only talking a millimetre, so miniscule growth." But the point is, the tumours ARE growing. We assume they would be growing bigger and much faster if my daughter wasn't on the treatment, but we'd value some honest opinions from the Oncologist AND the gynaey team about how long she can continue on treatment that isn't working and has unpleasant side effects. Chemo is not an option as the tumours are benign, though it was mentioned that it might be tried as a last resort. All I can think is that by slowing down the growth they are buying her some time before the perhaps, inevitable hysterectomy and bowel re-section which will result in a permanent colostomy bag. Trying not to get too disheartened, but it ain't easy!!! xxxx
That's good to know that the oncologist is intending to ring you, and that your back up plan is to ring if you don't hear by the end of the week. (Hopefully you won't have to). I'm hoping that you will have some answers after the MDT meeting and will be able to move forward with whatever they plan to do.
Please don't be disheartened - just positive and determined! The way forward is just around the corner.
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