Squamous cell carcinoma in the brain.

HI Jackie12345

a warm welcome to the online community. So sorry to hear about all that has been going on. Life really is too cruel for words at times.

I supported my late husband through the three years of his stage 4 primary brain tumour (Glioblastoma) journey so can empathise with what you are going through. He was 50 when he was diagnosed in Sept 2020 and we'd been together since we were 18.

There are thousands of different brain tumours and each one impacts the person differently. Everyone is unique and the treatment that works for one person may prove ineffective with another. It's beyond hard to get your mind round that. Your husband's medical team are best placed to advise you on why chemo won't work.

There is someone within the online community who went to Germany for treatment. I'm fairly confident that they will offer their words of wisdom shortly.

This is a safe and supportive space so please reach out here anytime. There's always someone about to listen who gets it, someone to hold your hand and to offer a virtual hug when its needed. You're not alone. We've got you.

It’s always good to talk so please remember that you can also call the Macmillan Support Services on 0808 808 00 00 - most services are open 8am to 8pm, 7 days a week Clicking here to see what is available. This service provides lots of cancer information, emotional support, benefit and financial guidance or just a listening ear.

for now though I am sending you a huge virtual hug and lots of strength

love n hugs

Wee Me xx

Hi 

Firstly it’s such a sad situation for you and your husband . 

My father got diagnosed with brain cancer - SCC in the cavernous sinus - moderately differentiated  . Where is your husband’s tumour located and where is he receiving treatment  ? My father has been offered no realistic treatment, no surgery as inoperable due to location in brain. Radiotherapy (if applicable) was too near his main functions to not cause him to deteriorate further or change his quality of life . He is much older 80 years which is a big factor we think, also suffered a mini stroke in the process   . Given 6-8 month before bedridden but that’s because of where it is as the tumour surrounds many of the main functions in the brain . It’s suppose to be rare but you’re the second person in a week that I’ve found on here but only if it’s in the cavernous sinus area  . Our oncologist has never seen it . However as “wee mee “ says there are many tumours . Diagnosis and treatment are specific to the patient, age, fitness, MDT teams it becomes a minefield . The other persons husband has also had immunotherapy in the U.K.  - look in the skin cancer forum . We are trying to enjoy life as much as possible and have  met with the palliative care team last week who are lovely . It all sounds depressing but we have tried to turn it into a positive . We decided to take control of the tumour rather than having treatment and it controlling us  . We have accepted this diagnosis although extremely hard however we are meeting another consultant from the palliative care team ( they offered this )  to talk through the decision that has been made as we are struggling still with the “ do nothing “ option .  Once decision was made to enjoy life it’s still niggling in back of head “ what if “ as it’s not in human nature to just give up . 

I'm so sorry that you’re having to go through this and your husband is far younger it must be a huge shock and disappointment that the radiotherapy has not stopped the growth . We were never offered chemo only radiotherapy but that was high risk. We have faith in the MDT however you could always get a second opinion. The mental side of this disease is just as bad as the physical one  . 

Hi Wee Me,

I'm so sorry to hear about your husband.

Thanks for your reply.

I do need to talk about Howard's cancer more since at the moment when we see friends, i just end up crying.

Nobody minds, of course, but it's also exhausting.

We're going to a friends house today & I'm dreading the emotion.

Thanks,

Jackie

Hi Kk18,

Howard's cancer is in the left frontal lobe but spreading quickly. He's being looked after by The Royal Sussex County Hospital, Brighton.

I totally get your struggle with the “ do nothing “ option & we will have to face that now.

We are even looking at alternatice therapies but that is a minefield. It would be nice to think that Ivermectin & Mebendozole could work but with no real evidence i know we're grasping at straws.

Thanks for your reply,

Jackie

Hi Jackie 

We were originally at Queens in Essex but moved house and now at Southampton, both highly skilled specialist hospitals  . Both had never seen SCC in the brain . How is he in himself as my dad so far doesn’t seem to bad except more tired ? I know it makes it more depressing but are you getting support from pallative care or a hospice . They are experts at dealing with this and we are talking death on a daily basis which I think is more healthy. ,We say to him the doctors aren’t always 100% right especially due to it’s type and location  . We are trying to encourage him to get out and about whilst he can . 

Regarding leaving the house I wonder if you have applied for support. Country Cousins do amazing work. I recommend them if you need a break.