Cancer Survival Stories

[livingwith]

I was diagnosed with this particular cancer in 2002 grade, 3 they told me. They, being the surgeons, decided it would be beneficial if I was to have radiotherapy. It turned out that I had six weeks of radiotherapy. Backwards and forward the taxis use to come. I should not moan. It is true to say that I have been left in pain all the time because of the evasive surgery. Nine years of suffering and none of the doctors taking me seriously. I’ve survived through sheer bloodiness and being stub...Read the full article

[feelinghelpless]

I am kind of new to this forum talk but I searching out to others to understand what my mother has been living with for the past 20 years. She had exploritory surgery on her spine to find out what was causing her legs to go numb. They found the cancer and proceeded with radiation. She is now 64 years old and is in severe pain every day. The doctors just tell her that she is a walking miracle and offer no help (as you have experience - no one takes her seriously). I can't help but wonder why there are not more studies on survivors. She refuses pain medication that will make her drowsy and incapable of daily activities. She too is a fighter and is not wheel chair bound yet but should be. Her feet and legs are numb to the touch but are in constant pain. One leg is practically of no use. She does use a cane but does not wear shoes no more than necessary. I am hoping to find something that can ease her pain or some research on survivors. Maybe to confirm if what she is suffering with is typical but if nothing else to know we are not alone in this. She refuses to go the the doctors anymore and I just do not know what to do.

[shazpb]

Hello everyone I am new to this forum. After reading the post by feelinghelpless I would like to share my husband’s experience with astrocytoma because he has experienced a similar situation to your mother’s.
My husband (age 47) was diagnosed with astrocytoma Grade II of the spine 36 years ago (1972) at the age of 11. He had an extensive lesion from T2-T6 that was partially resected, followed by radiation and chemotherapy. All was well until 1978 when a tumour in his brain (cerebellum) was found. It was classed as inoperable as it was inseparable from the 4th ventricle floor and once again he was treated by radiation and chemotherapy.
For the next 20 years he lived a relatively “normal” and symptom free life. Or at least that is what he led us to believe. I might add he is pretty good at hiding any discomfort. He went on to marry, have 3 children and worked, as all things as a furniture removalist. This used to horrify his neurosurgeon.
In 1998 his left leg started to feel numb, he had no hot or cold sensation, very wide swinging gait and lost of balance. He started experiencing tremors and also found that that leg would periodically just lock out in the straight position. I could go on with different symptoms but I think you can get an idea of physically how he had progressed. He also threw his shoes to the wind and has never worn shoes again. The main reason for this was that he developed footdrop and as a result found himself tripping over his own toes.
Further MRI’s over the last 15 years have revealed that he has now developed a continuous thoracic syrinx (C1 to T8) in his spine and also lumbar deposits (L5/S1).
Up until 6 months ago the only treatment he has had was the radiation and chemo back in 1972 and 1978 and an annual MRI. He refuses to take painkillers or medication. Not that they have ever been offered to him. The consensus was always to treat him conservatively as his level of functioning was good. My consensus is that they just don’t know how to treat him.
In June this year, he suffered a stroke which overnight robbed him of the use of all of his limbs. At the time the doctors thought the symptoms were due to the cancer and syrinx in the thoracic spine and they wanted to operate and insert a shunt. My husband refused as within a couple of days the movement in his arms and movement in his right leg slowly improved and the risk of inserting a shunt could leave him a permanent quadriplegic. It was November when they finally diagnosed that he had suffered a stroke that they believe was a rare complication of the radiation he had in 1978.
It is now 6 months since that stroke occurred and he has regained full use of his arms and partial use of his legs. He is wheelchair bound still but as he has never had any physiotherapy up until last week this isn’t surprising.
I also I can't help but wonder why there are not more studies on survivors. If I were a neurosurgeon I would want to learn as much as I could from a 36 y/o survivor. It is so disheartening just to be left on your own to deal with this disease and just expect to manage.
If we can help anyone please feel free to ask. No one deserves to feel isolated.

Regards Shaz