Pancreatic cancer but no tumour in the pancreas

[northfield91]

Hi I am new on this forum. My husband was diagnosed with pancreatic cancer that had spread to his bowel and caused a blockage. This was in march this year. On his scan in february no tumour was seen in the pancreas but after his operation for his ruptured bowel they found pancreatic cancer cells in the post op history. His CN 19-9 count was very high in his blood samples. This all seems so strange to me. Has anyone else had a similar experience? He is now having chemo but they are calling it advanced pancreatic cancer and have given a prognosis of between 6-12 months although depending on how he responds to the chemo. I have heard though that some people with inoperable pancreatic cancer do live 2 years and beyond. A the moment he is quite well still working although on reduced hours and eating ok. I find it hard to believe he is as seriously ill as they say although he has lost a lot of weight but most of that was after his bowel op as he couln't eat properly for while after.His weight has stablised now though. Just dosen't make any sense.

[LilyG]

Hi,

We are / were in a very similar position.

3 years ago, my husband was diagnosed with Kidney Cancer and had his kidney removed. Last March would have been his 2 years all clear but they found tumours on his pancreas. He had an aborted operation to remove his spleen and his pancreas because the tumour had spread to an artery. He was diagnosed with Locally Advanced Pancreatic Cancer and given less than 1 year.

He was prescribed with GemCap and went through 6 cycles finishing in February. After 6 cycles, in March, we were told that the tumours were stable but that his remaining kidney had been irreversibly damaged by the chemo and that they no longer believed it to be PC. The opinions of 2 histopathologists (looking at the existing tissue samples from last August) and 2 radiologists diagnosed metastatic kidney cancer and said that the samples showed only normal pancreatic tissue, i.e. he had been misdiagnosed, prescribed the wrong chemo, damaged a vital organ and left the remaining cancer untreated for over a year. Since then we have been told that the tumours have grown. He has just had another scan and an ECG as he suffers hypertension due to the kidney damage to ascertain whether he can have any further treatment.

My recommendation would be to GET A 2ND OPINION. The medical profession are not infallible. I do have one reservation though and that is that Trevor's CA-19 was never high but this alone is not enough to diagnose. It is worth asking.

Good luck.

[northfield91]

Hi yes was thinking about getting a second opinion. His consultant did say that his own immune system may have destroyed the primary tumour in his pancreas thats why it did'nt show in the scans he had. He had bowel problems for about 18 months before this was discovered and had an operation last november to remove a damaged piece of bowel but no cancer was found at that time.When his bowel ruptured in february this year they intially thought it may have been adhesions from the previous op that had blocked it. It was such a shock to discover it was pancreatic cancer that had caused the blockage. We assumed when they broke the news it was bowel cancer they had found. They are treating him with Gemcitabine He has just started his 3rd cycle so three more to go. Must admit apart from feeling a bit tired and a rash on his body he has had no other side effects from the chemo. He does get a pain in his hip at nightime which we are a bit concerned about but has had no abdominal pain or any other symptoms of pancreatic cancer apart from this raised CN19 marker.

Does anyone know if there is a secondary treatment they can try if gemcitabine dosen't work ?

Also don't understand why this particular cancer hasen't had the research into a cure that it greatly needs.

[Nardobd]

Hi Northfield91 - I did try and respond earlier in the week but IT problems got in the way.

Around 3% of cancer is found as a secondary with no primary tumour found, it's called "cancer, unknown primary" or CUP. The doctors know that it is a spread from an unknown primary because they look at the individual cells to identify the type of cancer (a breast cancer cell will look different under the microscope to a pancreatic cancer call).

My husband had Gemcitabine chemo (6 cycles in all) and, like your husband, didn't suffer any dreadful side-effects. The fact that your husband looks and feels so well generally is a good sign because it is one of the overall factors which the oncologists take into consideration.

Should the gemcitabline fail, there are other chemotherapies which can be tried but it may be an uphill struggle to persuade the consultant. Ted's consultant is very much of the opinion that the platinium based chemotherapies are much more toxic (ie they have greater side-effects) and that the additional benefits are insufficient to warrant their use.

After chemotherapy your husband may be offered radio-chemotherapy where a much smaller dose of chemotherapy is given in conjunction with daily radiotherapy. It is a sort of back-up to the chemo. Ted decided that he didn't want to have this because he isn't comfortable in hospital and daily attendance for six weeks was too much for him, but every individual feels differently.

Pancreatic cancer is a bit of a "poor relation" as far as research goes. I think that's partly because it's not something that everyone can identify with, partly because it's so very difficult to diagnose in the early stages at the moment and partly because many trials fail in the third (last) stage, either being found to have unacceptable side-effects or to be no more effective than treatment already available. Nevertheless, there are exciting new trials and research being carried out, particularly in the field of early diagnosis.

You are entitled to a second opinion and it shouldn't affect your husband's treatment. However, in the interests of good relationships with your consultant, if possible, speak to him first and explain that it's not a lack of confidence in his expertise but merely that you are confused and anxious. He will respect that and it will make things easier and smoother in the long run.

Finally for the moment, keep fighting and do let us know how you and your husband are getting on from time to time.

Kind regards

Nicki x

[northfield91]

Hi pennyb

Thanks for your posts. The website you suggested was very useful with facts about CUP. My husband has had all his treatment so far at our local hospital. When he was first diagnosed it was suggested he may have to attend xx but when he saw his oncologist she just said 6 months chemotherapy was the treatment they give for advanced pancreatic cancer as a pallative measure, He is now on his third cycle and does seem to be feeling quite well in fact much better than i was expecting him to be. He dosen't want to give up work completely yet as it keeps him positive at the moment although he does get quite tired.

The problem is once a terminal diagnosis is given it easy to give up but he is quite determined he isn't ready to leave this world yet!

Must admit do feel our whole life is in limbo and just cannot make any plans for the future. How do others cope with this dreadful illness?

Hello Nardobd yes will keep fighting.

xx

[northfield91]

Bit concerned about my husbands latest CN19-9 marker it went down from 8900 to 8100 after 3 cycles of chemotherapy.Seems very high has anybody else had a high reading like this? Did expect it to drop more than that.

[northfield91]

Hi all.

Been bit of a emotional rollercoaster these past three weeks. Hubby was taken into hospital with a raised temperature three weeks ago was treated with intravenous antibiotics which interfered with his kidney function so ended up staying in there a week having his kidneys flushed out. Anyway they have now postponed his chemotherapy for the past two weeks as his kidney function still not right. He had his CN19-9 marker checked last week and it has jumped from 8100 to 13300. The last few days he has very painful legs ankles are puffy and stomach pains. They are doubting if the gemcitabine is working as the marker has leap up with this break in treatment. They did say they may change him to a tablet chemotherapy if his kidneys can tolerate it. He has also dropped half a stone in weight up to now his weight remained steady. just praying this isn't the beginning of the end he has kept so well these last few months and now says he feels he is going down hill fast.

Teresa

[Nardobd]

Hi Teresa and I'm sorry to hear you're having a rough time at the moment. I, too, have been frightened by Ted seeming to go downhill in the past and I think it is a carer's lot to worry every time that "it could be the beginning of the end". Let's hope not and do let us know how your husband is doing when you get a chance.

Love

Nicki x

[northfield91]

Well Alan hasen't had any chemotherapy for six weeks now. He had an infection then had a partial bowel obstuction both lead to hospital stays. His oncologist seems to think the cancer is lurking around his remaining bowel and was responsible for this obstuction. She also said this may happen again in the future. He has lost more more weight and seems to suffer from bad acid indigestion that makes him sick. He is supposed to be starting 5FU next wednesday by injection if he keeps well enough to start it. He also has very bad fatigue seems to be fairly until lunch but after that has no energy at all. Not sure where he is in the scheme of things just don't know what to do. Feel so helpless.

Teresa

[Nardobd]

Hi Teresa

Fatigue is one of the problems Ted has. Like your Alan, he is ok until early afternoon but then really needs to rest. I send him up to bed for an hour or two and then he's ok for the rest of the day, so your husband might need a siesta too!

So sorry to hear about the bowel obstructions - nasty both to suffer and to watch. There are things they can do for the acid indigestion though - and there's no point in your husband being a martyr. As I say to Ted, whatever little things he can avoid dealing with gives him more strength and time to fight the real problem.

I do hope Alan gets to start his 5FU Wednesday. Hopefully that will make him feel a little better.

As for you, you're doing the only thing you can - being there to support him. That's not being helpless! Alan will appreciate your support and concern more than you he can ever express (and certainly more than he'll ever admit to you). I suspect, like me, you've always been a "do-er" and it's really hard to learn to sit back and play a supporting role but it's the most important thing you'll ever do. We don't have all the answers and we can't change anything physically but we can make sure that we're there to support our men (and kick them up the backside when they need it!)

Keep in touch and let us know how you're doing.

Love

Nicki x

[northfield91]

Hi Nicki

Well Alan in hospital again spent the last week being sick not keeping any solid foods down and not even liquid over the weekend.Went into hospital sunday very dehydrated very low sodium levels and very weak. Oncologist told us today that cancer has spread round his remaining bowel and into his stomach which has caused ileus in both.No more chemotherapy just keeping him comfortable . I pushed her for how long he has got and she said its a matter of weeks.Always knew the prognosis was poor but was hoping he would make his 60th birthday in December and just so devastated he has gone downhill so quick. He is still being very positive and making plans for xmas etc breaks my heart to listen to him.

Hope all okay with Ted.

Teresa x

[Ellie]

Hi Teresa

Just wanted to say I am sorry to read that your husband is back in hospital and not doing so well. Things seem to have happened very quickly for you and you must be in shock and so scared and upset.

I know how you feel about not being able to plan and look ahead. My husband will also be 60 in December and I try to be positive and think he will be here to celebrate, but there are times when I don't really know if he will be. Life is so damn unfair, isn't it?

My heart goes out to you at this time and I hope you will find the strength to support Alan through this awful time and that he is kept comfortable and pain free.

Sending you love and a hug from someone who knows how it feels to watch their beloved husband suffer from PC.

Ellie

xx

[northfield91]

Hi My dear husband lost his battle to this dreadful cancer this afternoon at the age of 59.

[volmod]

Dear Teresa - So very sorry to hear the news about Alan. He seems to have gone downhill very quickly in the last few weeks as a result of this dreadful disease - and this must have been so hard for you to hard to cope with on all levels. I hope you have family/friends close by who can ‘be there’ for you right now. My thoughts are with you xxVee