42 year old Mum that needs help

[joanna1975]

Hello All,

My name is Joanna and although I don't have a final diagnosis yet, I'm awaiting for my MRI scan results and scared to death that a diagnosis will confirm what I'm afraid of most- PC.

I have most of the symptoms of tail/body cancer and falling into depression. Unfortunately my GP thinks that I'm neurotic and if ultrasound didn't show anything and I don't fall into criteria ( age, jaundice, history of a pancreatic cancer in the family etc.) it must be IBS, even though my symptoms are typical for PC and very similar to some of you. I decided to do MRI scan ( with contrast) privately and waiting for the results, which I should get this week.I'll be very grateful for any help and any advice, I'm already in touch with some of you and hope to be in contact throughout my journey...

Thank you,

Joanna

[Dandygal76]

Hey Joanna

I dearly hope that you do not have PC and I am not being dismissive at all of the distress you feel but I thought 2 threads may be useful for you to read...

http://forum.pancreaticcancer.org.uk/viewtopic.php?f=28&t=1854

http://forum.pancreaticcancer.org.uk/viewtopic.php?f=28&t=1687

These 2 people also thought they had PC when the doctors were trying to convince them otherwise. This does not mean of course you should not be looking for answers as to your own condition but I thought they bring you some comfort whilst you wait on your results. For today, enjoy the sunshine and try not to fret too much (I know that is easier said than done).

xxx

[joanna1975]

Hi Dandygal,

thank you for your reply, I appreciate that.

I've read those two threads before writing my post and my symptoms are different to those 2 stories. About 3 months ago I've started to have a little discomfort under my left ribs, which now is getting painful and spreads to my back, just under my bra strap. The pain is not very strong, but every time I eat something ( I have to almost force myself to eat) I feel that pain, especially in the evenings and when lie down and sitting . For the last 2-3 weeks I also feel the a pain and fullness under my right side ribs...I also started to get morning sweats and diarrhoea. The other thing is a lack of appetite and I've lost a stone in less than 3 months, neuropathy pain in my right calf and fingers and nausea. And as I mentioned I have bouts of depression that makes my life miserable...

I really wish I was wrong, but as you can see my symptoms are typical for PC and I can't imagine how am I going to say that to my 10 year old daughter, she loves me so much and I love her to bits. Fortunately she's got loving dad, but she is more close to me. My husband doesn't want to talk to me about it, he doesn't accept that it may happen to me- just no way I can have a cancer, full stop. We don't have any family here, just few close friends. I'm so scared how to organise everything if I'm diagnosed, I don't want my daughter to see me suffering, I'd like to protect her from that... I'd really appreciate if anyone could give me any advice how can I resolve that?

Thanks a lot and hope to hear from you soon xx

[Veema]

My daughter was 8 when her dad was diagnosed and we were honest with her from the start. She felt like she could ask any questions and knew she'd get an honest answer. She once asked me if her dad was going to die and I just told her that I couldn't promise her that he wouldn't, but he was going to do his best to get better...we had almost 2 years before I had to tell her that he was going to die soon. She had a cry, told him she loved him, then went out to play. She is 10 now and he died last September. She's been amazing. Kids are resilient and they need to be told the truth...if you try to hide it from her, she'll pick up on it, she'll overhear things as you talk to others about it, she will not be able to trust you. Macmillan have a leaflet on dealing with children that you can download or get from the hospital. I don't know if PCUK have something similar.

I hope that you don't have this particular cancer as it is ruthless and relentless. But if it turns out that you do, we will be here to support you and our lovely nurses will be able to help with any medical things.

Lots of luck with the scan results

Vx

[Dandygal76]

Hey Julie,

When do yo get your results from the MRI?

L

[Elaine123]

Hi Joanna I have read your post and been thinking of the worry you are going through....wishing you the best of outcomes. Please keep us all updated.

Elaine

X

[Guest]

I am very sorry to read your post Joanna and I can understand that you are worried by symptoms that are not being resolved. One of the difficulties of diagnosing PC is that many of the symptoms mirror those of other conditions which means that it can be easily missed by some and in other cases the patient cannot accept that they have IBS or another condition which causes pain, bowel disturbance and weight loss. I really hope that your MRI proves negative for PC, it's a journey no one could ever want. The only suggestion I cam make while you are waiting is not to increase anxiety by surfing the web looking for explanations. The web is not complete, anyone can put stuff on it not just those who actually have the qualifications and peer group review of their work and none of those commenting know you or your history. Waiting is always horrible and I feel for you.

Marmalade

[joanna1975]

Dear Veema, Dandygal, Elaine and Marmalade,

thank you all of you for your support, it really makes a difference knowing you're not alone and that you're so helpful.

Veema, I'm so sorry for loss of your Husband and Dad to your child...

Thank you for your advice, once I know the diagnosis will have to pass that as gentle as I can to my beloved daughter, although I can't imagine that. My daughter is also 10 and I hope she would be so brave like daughter. It gives me a hope that my daughter will be like her. Actually my all worries are around my child and husband. I don't worry as much about myself, just worry about them- how would they cope and etc.

I've received an email with the attachment of the results, but decided to wait with the opening as I don't want to see it when my daughter is home. She's going to have 2 days of sleepover at our friend's house ( I drop her off on Wednesday evening and pick her up on Friday) so my husband and I can go through the results and if bad- just cry and cry and cry... And then we will have to to find a strength to get our daughter home and talk to her...

On Tuesday going to get some antidepressants as it's getting difficult for me sometimes...

Once again- thank you Veema, Dandygal, Elaine and Marmalade,you all have been going through so much but still have time to help others. Your words are for me like a healing ( do you say like that in English? )

Will keep you posted, unless I'm totally broken with news for a while,

Love,

Joanna

[raun cesar]

Hi Joanna, hope the outcome are favorable. Keep us updated….

Good Luck.

[joanna1975]

Hello All,

I opened my results yesterday evening and even though I should feel a deep relief I'm still worrying, although not as much as before. It says :

"Standard MRI sequences of the abdomen with MRCP reconstructions and dynamic post contrast images were performed. The liver parenchyma demonstartes uniform signal intesity without evidence of steaotsis or chronic diffuse liver disease. Two small subm cysts are seen in the right lobe. No other focal pathology is seen. The gall bladder unremarkable without evidence of stones.The biliary tree is normal without features of cholangiopathy or choledochal anomaly.The portal and hepaticveins are patent. The spleen is normal size.The kidneys and adrenal glands bilaterally are normal. No evidence of stones or hydronephrosis. The pancreas is unremarkable without features of inflammatory pancreatic disease. No evidence of junctional indicative of sphincter of oddi disfunction . No enlarged nodes are seen in upper abdomen. No free fluid or collections.

Conclusion.

No hepatobiliary or pancreatic pathology seen.

No renal or retroperitoneal pathology identified. "- I've copied with original spelling.

I'm really surprised ( but also glad) that everything looks perfect apart from those 2 cysts. Where all those symptoms are coming from then? The pain under the ribs that radiates to my back ( sometimes on both sides), pins and needles in my fingers and right calf, lack of appetite... What else can cause such pain? Is it possible that MRI could miss a tumour? What is your opinion about MRI in diagnosis?

Please share your experience or let me know what do you think about it. I'm not sure what to do to find out what is wrong with me.

Thank you for every suggestion and opinion about that,

Joanna

[Veema]

I am so very relieved for you. I think it highly unlikely that a pancreatic tumour would be missed on a scan, particularly as that's what they were looking specifically for. There are many other abdominal conditions that can cause similar symptoms. Please don't worry that something has been missed, I think that report sounds very thorough.

Now to find out what it is that's causing you the pain and discomfort...

Vx

[Justamo]

Hello Joanna. I'm sorry that you've had such a worrying time but delighted to hear the good news of your results.

You ask what you should do to find out what is wrong with you. The answer is simple - ask your doctor and be guided by him or her. Even a highly qualified doctor would not attempt to diagnose his own illness, and certainly nobody on this forum would offer medical advice. You shouldn't be trying to find out what - if anything - is wrong with you. That's a job for a qualified professional.

If you are not confident with your doctor's advice, ask for another opinion. I'm sorry if this sounds blunt, but you are tormenting yourself with "what ifs" and that mindset can develop into a cyclone of negative thoughts. Add internet search engines to the mix and you have a real nightmare situation.

You have been through a very worrying time. Hand those worries over to your doctor and listen to what he says. I really hope that you get reassurance and trust that you will be able to move forward very soon.

Kindest regards

Mo

[joanna1975]

Hello again,

thank you Veema and Mo for your reassurance and kind words, I really appreciate that.

It looks like I need to talk to my GP and ask her for further investigation into my symptoms as I'm still suffering and don't know the cause of it. I hope that she'll help me eventually as I can't suffer with that increasing pain and need to know what is wrong with me and start a treatment for whatever it is.

I just can't understand why do I have those pains when sitting or laying down? Isn't that typical for pancreatic pain?

Kind Regards and have a peaceful weekend,

Joanna

[Veema]

It's hard for me to comment on the pain side of things because my husband didn't have any pain at all. But, the body is a complex thing with nerves all over the place...it really could be any number if things causing that pain. Why don't you give the nurses on here a ring on Monday and see if they can help...I'm sure they will have some ideas of conditions that can cause similar symptoms. I would imagine if you were getting pins and needles in your fingers it may be more if a circulatory problem or some other nerve issue.

I hope you can get to the bottom of it, I appreciate pain from an unknown source would be worrying.

Vx

[joanna1975]

Hello,

thank you Veema for your advice, I've emailed the nurses with my concerns and waiting for a reply. They're really fantastic!

I was doing some research yesterday as what else can cause similar symptoms and I think I should suggest to my GP to check if I don't suffer from hyperparathyroidism: http://www.parathyroid.com/parathyroid-symptoms.htm . There's lots of symptoms apart from abdominal pain I'm experiencing and I didn't think of much, like: heart palpitations, bone pain , thinning hair, problems with concentration etc. . I think it's worth to check that option.

Thank you so much again,

Kind Regards,

Joanna

[Guest]

Hi Joanna,

Good news about your MRI results. You don't seem to be happy with allowing your GP to investigate your symptoms or with his/her view of IBS which has all your symthoms. It is most unlikely that you as an amateur, however gifted, could do a better job that a good doctor who has been trained to investigate, diagnose and treat. Many conditions have the same or similar symptoms and if you keep surfing and looking for diseases you will find loads of them but also run the risk of feeding your anxieties and make yourself more unwell. If you don't feel you are getting good care then you should change doctors or ask for a second opinion. Have you thought about the possibility that it is IBS? Taking steps to minimise the impact of this condition may help and it is something you can do while waiting for any other investigations.

Good luck, Marmalade xx

[MARKSEANTAYLOR]

Hi joanna, I have exactly the same symptoms as you and the same experience with clean scans. I’m very keen to know what ended up happening with you? I’m almost convinced I’ve got pc but finding it complex to deal with the clean scan? Thanks mark

[Veema]

MARKSEANTAYLOR wrote:

> Hi joanna, I have exactly the same symptoms as you and the same experience

> with clean scans. I’m very keen to know what ended up happening with you?

> I’m almost convinced I’ve got pc but finding it complex to deal with the

> clean scan? Thanks mark

I thought it was your friend who has been diagnosed with pancreatic cancer?

MARKSEANTAYLOR wrote:

> my friend a UK resident and citizen is currently on business overseas and

> has just being diagnosed, Im trying to find out how we contact the NHS from

> overseas to arrange a consultation and potentially organise surgery?