Recently diagnosed

Hi Amy

I am sorry that you have not yet had a response to your post but it can sometimes take a few days for someone with similar experiences to reply. 

I am really sorry to hear that your Step dad has had a diagnosis of GBM last week and I can understand how worrying it must feel for you all at the moment. I am glad that you have reached out to us for support. 

If you do feel like talking things through would help, then please do give the Support Line a call. They are there from 8am-8pm everyday. 

I wish your Step dad well for his surgery next week. It sounds like you naturally have questions that you need answers to. Normally when cancer is diagnosed the person is assigned a Cancer Nurse Specialist and they are there to help answer any worries and give support. Also his Consultant would be a good person to talk to. They would be the best people to talk to about the planned wedding. 

It may well be that the consultant will have a clearer picture once his surgery has happened and also to see how he responds to any other treatment (chemo/radiotherapy) 

Supporting someone with cancer can be a difficult time and we do have a forum that may be of help.

+) Family and friends of people with cancer forum | Macmillan Online Community

Hopefully by me responding to your post it will bump it within the forum and someone who has had a similar diagnosis will see it and offer further support.

In the meantime, we are here if you need us.

Jane

Hi Amy,

I’m not sure that I can contribute very helpfully to your query as my husband’s situation was different from your Stepdad’s in that his first tumour (right frontal lobe) was removed entirely (ie all that was visible to eye and scans at the time) but he had an inoperable one several months later.
This second one was didn’t look terribly distinct initially from the MRI and was only about 11/2 cm in diameter. It was however in the corpus callosum in his left hemisphere, in an area that allowed rapid progression.
My husband was able to have 2 out of 6 scheduled chemo sessions to treat this second tumour before he deteriorated significantly.

I’m sorry, I can’t be of much help. As previously advised, the people to speak to are your Stepdad’s consultant and specialist nurse.

I hope very much you get the answers /advice you need to make decisions going forward.

With warmest wishes and a virtual hug.

Ax

My advice would be pull it forward and don’t waste a minute. These tumours can seem under control and it can all change overnight. It can of course be doormant for a long time. But when my husband was diagnosed we lived life fully for 4 years and did everything and didn’t delay anything and I’m now very grateful we got on and got so much so much done and made so many memories xx 

Hi Amy. My wife of 43 years, and she is 62 years old was diagnosed with two glioblastoma brain tumors. The last real conversation I had with her was just before she went into surgery. The surgery forever changed who she was. The doctors were able to remove 1 of the two tumors to 90%, the other tumor was left alone due to the location and the harm a surgery would do to her. Before you go through surgery contact Dr. Kaseri at St. John’s Hospital. Had I known then what I know now, I am not certain that surgery was needed at that time. Dr. Kaseri might just recommend putting your dad on steroids and chemo that would give you far better quality of life than jumping into surgery and forever see the change in your step dad’s personality, the way he thinks and remembers things. Surgery was the only option I had at the time, they made it sound like an emergency and I seriously question that today now that I found Dr. Kaseri and his care team. St. John’s hospital is located in Santa Monica California. If this is an option for you I would love to hear the outcome. This cancer needs to be treated for best quality of life knowing that by everything I read the average life expectancy is 12 to 18 months. Go for the quality of life enjoying him as the man he is today for as long as you can resist the surgery, because the surgery will change him. I know this through my experience. My wife is still alive today and her struggle is real, and this cancer is brutal. My wife is 10 months into this now and her decline is slow and steady. I am not sure what tomorrow holds, but this hole thing is hard on our family and difficult to navigate. I wish you the best outcome.

Hi Robbie,

It is a really tough call isn’t it as we can’t predict the outcome, instead we make what we hope is the best call based on advice at the time.

All our experiences will be different. In our case it was surgery that (first time round) brought my husband back to me. Admittedly, the road ahead from that was a tough one until a second tumour (in a new area) proved inoperable and decline was from that point rapid.

In our situation, we were very grateful for the extra time that surgery gave to us.

Wishing you and your wife all the best.