Widespread bone lesions cannot find primary - 1270537

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nikkie76
Widespread bone lesions cannot find primary - 1270537

Hello I am hoping to find someone who is going through what I am. My son was born in 2012 About a yr And half before he was born I started getting a real bad pain in my back at the bottom right side. I went to doctors who eventually sent me for a ultrasound which to them seemed normal even though they found a dermoid cyst on my ovary the pain never stopped just got worse but then I fell pregnant and tried to forget about the pain as I was severely sick they told me this was hyperemesis well after my son was born I continued to be sick I went to the doctors telling them how tired I am even though I had a baby this was different. Anyway last year after another hospital admission I went private through the nhs and started to have varied tests coloncoscopy endoscopy barium meal etc which all was normal, until dec when I had a ct scan of pelvis and abdomen which showed bone lesions so then I had a MRI spine which also showed numerous lesions. I have A lump in my breast so they went with a mammogram and ultrasound and said that was ok I had inconclusive test for fna lymph nodes and MRI breast inconclusive but still I was told I had secondary cancer and was going to die then they changed it to myeloma and then poems syndrome but my bloods or scan wasn't showing cancer I am extremely ill fatigued lost movement in my right leg hot sweats etc. they then said it could be benign but I am in a lot of pain and in a lot of painkillers including morphine. I was sent to a metabolic bone centre and he hasn't seen original MRI or ct scans but made me have a dexa scan which he said lesions are everywhere I just can't cope anymore I have 5 children and have been bed bound most of the time I have just spent 2 weeks in hospital because of the sickness has anyone had anything similar to me and what was the outcome?

catdander
HI Nikkie,

HI Nikkie,

I'm so sorry you're having such difficult problems. It sounds so complicated that it's probable there aren't many if any others like you. However there are issues that baffle and diagnosis is sometimes incredibly hard. Through my years here there have been more than one who had a diagnosis of lung cancer without a primary tumor being found. Being seen by specialists who have all the accumulated info may be your best bet to find out what's going on and more specifically how to treat it. Sometimes it's a matter of keeping up the hunt yourself to push those who can help. I'm sorry but I don't think we'll be able to help without a diagnosis. Our specialist practice on people with a specific cancer diagnosis.

If you find you have a diagnosis on which we have a specialty please let us know if we can help.

I hope you find a reason for these issues and all best to you and your family.

Janine

nikkie76
Hi there's loads I have

Hi there's loads I have forgot to mention sorry they done a ct scan of my chest which showed multiple emphysema bullae in my lungs hopefully will get some answer soon so will update on my wall

nikkie76
My last blood tests there was

My last blood tests there was loads below limit & others with high range can't remember wich ones exactly but my white cells were above range so we're the ones that are to do with lymph nodes I have a few swollen ones and some I didn't even know we're there under my right arm wish I copied the results of blood now because there were a few not right. The MRI and ct are consistent with Mets and every doctor has said so but after most tests the oncologist before said they were just out of range but last blood test was everywhere and then my doctor said before I went to the bone metabolic unit it could be osteopoikilosis but the bone doctor said no so it can't be any bone disorders that they have seen before and I reckon if he had seen my original MRI and ct results he would have agreed it is a rare cancer sorry for the poor updates but I am not very good now at typing and remembering certain things he has referred me to a neurologist in meantime for my sickness because he doesn't think that it is related so I will have to wait until he has seen original scans he has now requested. I would of thought if someone has been referees they should have sent results straight to him

JimC
Hi nikkie,

Hi nikkie,

As Janine said, I hope you can find an answer to what is causing these issues, but until you have a specific diagnosis there's not much we can suggest, especially since the GRACE faculty don't have all your information or an opportunity to examine you. Ultimately, a cancer diagnosis would be made based on a biopsy or specific testing (such as for myeloma). Certainly we hope that's not the case, but if you are diagnosed with cancer we will try to answer whatever questions you have. In the meantime, though I know how difficult the waiting can be, the workup will continue until an answer is found.

Good luck, and best wishes.

JimC
Forum moderator

<p>I began visiting GRACE in July, 2008 when my wife Liz was diagnosed with lung cancer, and became a forum moderator in January, 2010. My beloved wife of 30 years passed away Nov. 4, 2011 after battling stage IV lung cancer for 3 years and 4 months</p>