any information or advise please..

barbara_oz · New User Joined: 10 Apr 2006 Posts: 2

Hi everyone,
I am really hoping someone will be able to give me a clearer picture of what my family can expect in the coming months. My (very young) 76year old mother is a chronic asthmatic and was seeing her regular doctor for 12months complaining of breathing difficulties. Her doctor kept telling her it was asthma related even though she insisted it wasn't (small country town only one doctor) eventually she was admitted to hospital where they found a bacterial infection.

After treatment did not clear the infection up a CT was done which revealed a mass on her left lung. She was then admitted to hospital for a biopsy (not sure what type) involving a tube down her throat. Two days later (without anyone with her) the registrar doctor told her to go home, see her GP and prepare for the worst. When she asked if it was cancer he said "yes".

My sister and I went to her local doctor with her to offer support, when we arrived he hadn't received any report back and rang the specialist at the hospital who told him the test results came back negative..we were overjoyed thinking there had been some sort of mix up. It was short lived though as the hospital again contacted mum to organise a PET scan and told her the test was only negative because they couldn't get a good sample (the tumor is wrapped around her aorta and pressing on her windpipe, we've been told it is growing very rapidly).

The specialist told us the PET scan was inconclusive and to get a positive result (which he was 99% sure of) mum would need to see a Thoracic surgeon for a more invasive biopsy. By the time mum got to see the surgeon she was a mess, shaking uncontrollably and her asthma had gone haywire. The surgeon took one look at her and said he would not attempt a biopsy unless a radiologist said he would treat her as she was too frail. He told mum his nickname is the "hammer" because unlike his colleagues he was not afraid to give bad news. He was 100% sure it was cancer and if he did attempt a biopsy and it came back negative he wouldn't believe it and would continue to take samples till a positive result came back.

He made an appointment with a radiologist and then asked mum if she wanted to talk about facts and figures and a time frame. Mum just shook her head and left, but my sister went back in and he told her 2 months.

My mum was in a lot better shape when she saw the oncology radiologist, who showed a lot more empathy and actually listened to what mum was saying (mum was still convinced it wasn't cancer but the infection which hadn't cleared up). He told her he was also 99% sure it was cancer by the PET scan and was happy to commence radiation treatment without a biopsy but he could not cure her, only offer her a 'quality of life'. There is also suspicious activity in her bowel and left groin.

We have no idea what type of cancer it is or how long we will have mum with us. Although the thoracic surgeon said 2 months that was without treatment. Mum is still clinging to the hope that it isn't cancer because her blood tests are normal, she hasn't lost weight or coughed up blood and is yet to get a positive result. This has made it really difficult to ask any of the doctors more in depth questions about a prognosis.

Poor mum had her first bout of radiotherapy on the weekend and although she felt fine straight afterwards, was in agony by the drive home, the pain lasted for a few hours before subsiding. Mum has four more sessions to go and we have no idea what happens then..it is all very scary.
Can anyone give me any information at all on what to expect or what we can do to help her? Also does anyone know how long it will be before mum feels any benefit from the radiotherapy? She is having a lot of trouble breathing at the moment and we're hoping to see some improvement with it, but dont know when..
Barbara

deba · Regular Joined: 28 Feb 2006 Posts: 28

Barbara,
Goodness, but my heart goes out to you and your family! Your mom went through a terrible time with that rude, horrible doctor and the inconclusive tests and everything!

I wish I could help you, but please just know that someone on here will help you. My Dad is not having radiotherapy on his tumor, so I have no information to give you.

My Dad has extensive small cell lung cancer with mets to the brain (several brain tumors). He is in his second bout of chemo - the first lasted 3 months and now we are on a different type. Dad's tumors have all shrunk, but not gone and he is comfortable.

My best to you!

Deb

bkerber1

Barbara,
Wow, your post sounds very similar to my Dad. They have never been able to biopsy his tumor but he went for 32 treatments of radiation. His radiologist said that the PET scan was very accurate for diagnosing cancer. He had no trouble with the radiation other than swallowing. My mom on the other hand was diagnosed with a biopsy. She only had a few radiation treatments to try and shrink her tumor. It is closing her esophagus and she had a lot of pain from the treatment. It swells the tissues and causes pain but then it should shrink back down and hopefully help some. My dad still doesnt know what kind of cancer he has but this past weekend he had to have a permenent drain put in around his heart sack due to fluid build up and they were going to try and biopsy that. I hope you have a support system. It has made all this so much easier to bear. Keeping you in my prayers.

Becky

barbara_oz · New User Joined: 10 Apr 2006 Posts: 2

Thank you so much Deb and Becky for answering my post, I dont think there is anything that can make these situations less tragic but when you know you're not the only person in the world going through this, and that although it's painful and hard going people cope and manage to be there to support their loved ones, it makes the fear of the unknown less frightening.

Mum went for her last radiotherapy treatment on Friday. She only had five in total and from what we can gather there will be no more treatment available to her. Although she has some pain, her breathing is heaps better. It's so hard to know what to do. at present she is staying with my sister and is moving around very little.

I suggested that she go home to her own place with my stepfather for a week or two now she's feeling a bit better so she can be as independent for as long as possible, but we (mum, myself and two sisters) all live so far apart (in a 350k radius), I'm worried I may be pushing her to something she can't handle (although we're all only a phone call away).

I just don't think it is good for her to lay in bed 24/7 when she can still manage to be independent, my sister is doing absolutely everything for her (she is incredible and we are so blessed to have her in the family).
Although, I keep thinking that if the purpose of the radiotherapy was to give her some quality of life, then what's the point if she doesn't make the most of that quality.

I think if mum accepted that this $#@!+* disease will eventually take her life she would have been thinking along those lines herself, but she still feels she is only staying with my sister till she is better (cured) then she can go home and life will get back to normal.

Thanks once again for letting me share my fears and uncertainty, when you both also have your own path to travel. I want you to know that you will both be in my thoughts and prayers.
take care
Barbara

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