Hi everyone

I have just had 3 monthly MRI and CT scan....have an appointment at RF next Thursday to see if any tumours have regrown following liver and lung resection...I find the time between scans and results really tough...how does everyone else cope with these horrible waiting time? I guess there are no magic answers but would be comforting to hear I am not alone...

katherinelennard
Hi Katherine,
It certainly doesn't seem 3 months since your last check. Time flies by. I hope everything goes well next Thursday. Please let us know.
You're ahead of me again I'm afraid so no insights as to how to cope best with the waiting. I'm still recovering well. Back in Leeds on the 19th January for a discussion following my bowel/liver/gall-bladder op. I guess they will have all the biopsy results. Said they would discuss whether any more treatment would be needed. I'll let you know what they say about possible future treatment. I guess you aren't on any further treatment.....just the regular follow-ups?
Does anyone have sandostatin just as a precaution after ops or isn't it used for that?
Another 6 weeks after the initial discussion I have the first of my 3 month scans. Not sure what tests and scans they will do every 3 months at Leeds. Again I'll let you know.
All best wishes, Mike.

Hi Katherine

No your not alone but that doesn't make it any easier for you to bear does it. I was diagnosed 11 years ago and like everyone else have had every test under the sun. There isn't any magical answer or way to deal with it, the waiting time is horrendous, the only thing I can say is that the older I get the more acceptable I am and I feel that no news is good news, with me, if there's a problem then my Consultant usually phones me about 2 days after my tests, so as much as that's a shock to the system and I go slightly into panick mode at least I haven't waited to long.

I do feel for you very much and wish I could wave a magic wand for everyone but then the world isn't a perfect place, but take comfort in the fact that there are an awful lot of us out there suffering the same thing and as one lady put it, it's one of those cancers that's "going to the grave with me and not putting me there".

Love

Maggs

Ha, I like that last bit Maggie, made me laugh...
Yes, I know that there is no way round the waiting, just got to get on with living. What a kind consultant to call you after tests, I have to wait about 10 days. Actually I find the day of the appointment the hardest, feel a bit demented.

Mike so good to hear from you. They have kept me on the Sando monthly but will reconsider after the results of these 2nd lot of scans. Actually I think they are making me a bit constipated as there are no tumours secreting hormones...well that is my theory so not sure if that can be the case.

I forgot that you also had bowel op,wow a triple whammy. So happy to hear that you are recovering well. I still feel my liver enlarged and slightly protruding. I was wondering if anyone else felt this 9 months after liver resection. When I sneeze I have to hold my liver and the scar on my back from the lung op...so woe betide anyone sitting in front me!

Keep in touch Mike and I will also post results next Thursday.

Lobe to all

Katherine

Hi Katherine

You are definitely not along! I am also on my three monthly tests starting next week with bloods - the dreaded chromagranin A etc on the 10th followed by gallium pet scan on the 19th and results with Dr Wasan on the 22nd. I have been on three monthly since radical hysterectomy December last year (preceded by bowel resection and liver resection). I find I can put it to the back of my mind until a week or so before it starts and then it is hard. Feeling particularly tired at the moment - could just be overdid it over the xmas period. Have been having some paid in my back but had a liver ablation in November so could be from that.

Mike glad to hear you are doing so well - bloody hard some days!

My best to you all it is so good to have this forum to keep in touch with others in the same boat.

Many thanks

Bonny

Hi Bomny
yes it is the same for me, I am OK until a week before the results...and then I feel physical symptoms, probably psychosomatic, and convince myself that tumors have sprung up.

I am still tired much of the time, we glibly mention our many complicated treatments and operations, when others would curl up and in horror at the very thought. They take their toll on our bodies and tiredness is so much part and parcel of what we all live with. having said that I now appreciate everything that my life has on offer so much more that before. There is a radiance and pleasure in the simplest of things. I know it sounds corny but that is, for me, the silver lining.

Best wishes to everyone

Katheriene

Hi Katherine,

Waiting equals stress to me since I've been diagnosed with PNETS. I am 3 and half months post op and now I will require hernia repair surgery. My surgeon scheduled a CT scan for Friday the 13th and will not meet with the surgeon for the results until the 17th. My cancer counselor advised me to listen to anything that will take my thoughts to a happy relaxed place but I find it so very hard to do. Please know that you and everyone that struggles with this chronic condition are in my nightly prayers. I have also been watching my favorite comedies.... I am having sharp pains on both sides of my incision along with nausea on a daily basis....however I think to myself it could be worse....

Nancy*

Hi all, I don't have to go back until May to see Dr Wasan, with my CT scan and bloods done the week before. They haven't said about doing another chromagranin A test and it will be a year since the last one. I don't find it too bad waiting until the day but I find it more stressful to wait the extra 2+ hours in the waiting room to see him. As I work full time I do find that I can put the cancer to the back of my mind when I'm busy here which helps. I'm still having the monthly lanreotide injections 120 and I still seem to have diarrhoea which did clear up a while back but is now back and I do bruise easily.
Take care, Mandy

I, fortunately, still do not have a carcinoid diagnosis. I see 3 different doctors who all do their thing - but now the pulmonologist said they would be foolish to not feel the tumors are related. I had my 3 month CT Scan w/contrast last week. Wonderful report is - no change to lung tumor. It said it is a hemartoma or vascular carcinoid. Tomorrow I go for an MRI w/contrast of the liver. The count is 4 or 5 tumors. Gastro says this MRI will rule in or out hemangioma. Because the Chromagranin A was high, he says "if it walks like a duck...." If this test cannot call them hemangiomas, I will have liver biopsy. Today I go to have a solid cyst removed from my chin. One is also starting in my nose. The skin dr/plastics dr said it is nothing, but I am anxious that this is related to the other tumors in lung, liver and spine. Yes, I'm a bit anxious. I also just tested low for Creatinine Clearance and low for 24 hr. Creatinine. And very low for VIP. Does anyone have any experience with this? Thank you and good thoughts for all. Barbara

Hi Nancie 1958

Just read you are awaiting hernia repair op. Having had lower bowel pain since October and needing emergency C.T. scan on 23rd December 2011 when I could no longer tolerate the pain, retching and nausea they realised maybe something not right going on here!! Told me today I am being referred to surgeon re hernia op.Do you suffer similar symptoms? As well as the above, if I stand it hurts and draws and when I bend to pick anything up off the floor. I cant iron or hoover now as that causes pain.
Had half large bowel removed in 2008 and had Y90 2010-2011 which made me sick for months so I suppose the constant retching put lot of strain on bowel.

wishing you well
lin x

Hi Lin,

Complication from my PNETS surgery last Sept was my incision opened up after the staples were removed. My incision has finally healed after 3 months of weekly home health care and during one of my debridement appointments with my surgeon she informed me at that time (mid October) that I would be having hernia surgery. In the last 2 weeks I have been experiencing daily pain around my incision, nausea/retching/vomiting, and cannot take a deep breath w/o pain. Like you I cannot do any of my daily activities w/o great discomfort and I also agree that the retching/vomiting are making the issue worse. The nurse practitioner told me to wear my abdominal belt which has not helped. She stated that the build up of scar tissue along with fluid could be causing the pain & pressure. I will be having a contrast CT scan this Friday and the results appointment with my surgeon next Tuesday. I also wish you the best of care Lin and please keep us posted with your progress. I will do the same .....

Nancy*









Nancy*

Sorry for all the spaces .... Can you tell I am not having the best day. (weak grin)

Hi Katherine,

I feel since finding out my Husband "Morris" has Liver Mets, all we seem to do is wait....
We last went to RF on 2/12/11, given the good news that it hadn't spread anywhere else (other than the liver, which we knew about).
I was so happy when Morris started treatment on the twice daily Octreotide injections and other meds changed (various tablets), but didn't realise how sad it would be seeing Morris doing these injections everyday and how poorly he still feels most days. (I hate needles and I'm squeamish at just a normal blood test) but sometimes I have to inject him in his tummy as he's run out of room in his legs and they get so sore & lumpy. (He said it hurts so much in his tummy that he can't inject himself there, only in his legs)
The funding was rejected for the LAR monthly injection at our GP's, so we are now waiting for the PCT to get the LAR through RF.
In addition we found out the week before Xmas, the team had their MTD meeting and they are 99% sure they will go ahead & operate on Morris' liver to remove the tumours which are both inside & on the surface, we thought this was good news (apart from the fact neither of us are looking forward to this big Op, but guess better out than in), but Nurse said they would re-scan in March - MRI liver with contrast & Ct Chest as well as 24hr urine & bloods, we're back in clinic mid April. It was bugging me, if they can operate then why wait 3 months to have the scans done again? I spoke to the nurse last week, she said they have to check the tumour growth before a final decision is made to operate or not. It has to be a minimal growth rate otherwise no point in operating if they are to grow back. Now it's on my mind everyday and gets us both down, as we're playing the waiting game again to see if they will operate for sure or not? then I keep thinking the Octreotide suppresses the tumours, so they shouldn't be growing - right?
Also just received copy of letter that's sent to our GP from RF, no-one has told us they found a tiny indeterminate 4mm nodule in the lung but from what I can make out means it's so small that they can't tell at this stage whether it is also cancer or not? I haven't discussed this with anyone yet. I suppose the scans in March will show if any difference in growth of this? I still don't understand why no-one told us about this, cause surely any growth in the lung can't be a good sign, small or not?
Sorry this has turned into another essay, guess it's a few things I wanted to share with you and get off my chest...
Wishing you the best of luck for Thursday, will be thinking of you and know how you must be feeling. I hope it's good news! It's always in my mind & not to forget that carcinoids as we know are slow growing but as you know, we can't help but wonder & worry.
Please let us know how you get on?
Love & Best Wishes
Claire xxx

Hi, Claire , i also was told no change at my clinic appointment ,then recieved a copy of the letter to my GP from the RF which stated that there was a new uptake found on my last Galliun scan which i was not told about , i think when they are not sure about things they like to get other tests done before they worry us unnessesary, they forget that we get a copy of every letter they send to our GP which is more worrying to find out in a letter. I have had all the tests and scans done again before christmas and i see my local consultant the 23rd Jan for results and go to the RF in Feb ,try not to worry to much as it always takes time and many tests and scans before they decide what is the best treatment .


All The Best

Julie

Hi Katherine,
Sorry to hear you are going through this what I call Living in Hell time... between scans and results. You are perfectly normal and although it doesn't help we know how you feel.I always think the disease is bad enough without these constant tests, scans and waiting.
Be thinking about you Thursday and sending a HUGE hug.
Lets know how you get on and in meantime take care.

Love lin x