Hi hun

i was 44 when diagnosed , my tumour was 9.5 cm and the pathology was t3a grade 3 ! if i can help in anyway please ask away ! i’ve got my 18 month scan coming up on the 8 th May - my daughters birthday x jo

Hi there Keira,

Thanks for your reply. 

Glad you are doing well. 

I have my scan in May and fingers crossed.  I have been trying to eat very healthy and to manage the stress level as much as I can  

Good luck with the scan, hope all goes well.  

Much love,

Monica

Hi Monicabee

Im sorry to hear about your diagnosis.  My husband is T3b N0 M0, Leibovich score 7. He was diagnosed in April, had a nephrectomy and his adrenal gland removed along with a tumor that was about 6 inches on all sides. My husband is a GP and even he doesn’t quite grasp this and he’s up one day, down the next.  He keeps being told he can go back to work, but then they say no.  

I have found that support groups, cancer charities and even the cancer unit at our hospital have been amazingly helpful to both of us.  Magpies does a lot of good support activities, counseling and other work with patients and families. They can talk to your children, help them understand, make things easier to digest. 

My husband was put on a trial called RAMPART.  It’s immunotherapy based on its success with metastatic RCC they’re trialing it for non metastatic RCC from what i understand at least and there’s been so many booklets, papers, it’s overwhelming.  Unfortunately my husband had just got most of his energy back when he began immunotherapy treatment.  The first treatment made him fatigued and he’s discovered he can’t eat spicy food for a while but he’s found it tolerable though it’s different for everyone. 

We are trying to be positive as well, everyone we’ve spoken to believes trying to be positive and getting support for yourself and possibly family members is so helpful.

They say at T3b, he’s got about a 50% chance of five years but then they say necrosis in his tumor makes that less than reliable. But nobody has said prepare for the worst and his oncologist is really good.  We don’t have kids but we do have our families and they worry. 

As the wife of the patient I’m happy that my husband is seeking ways to cope because it helps him, us, and when he’s back at work it’ll help him in seeing patients especially those going through cancers themselves.  Also let others be supportive because it helps them and you as well. 

I don’t know what the future holds but we’re trying to take it one day at a time. 

I wish you and your family the best. 

Cari 

Hi Keira

I was reading your reply and I think I exhaled a bit. My husband was diagnosed this April and as I mentioned to Monicabee, he’s t3b, leibovich 7. His tumor was 13cm all sides mostly and there was necrosis in the tumour and a blood clot in the vein in the kidney so his nephrectomy was complicated.  He’s on an Immunotherapy trial, two drugs and scan every four months but even though he’s a doctor himself he’s scared. Doctors he works with are scared. You said you’re going for scan at 18 months?  Hope that was a good one. We’ve had randomly good or not good scans so I guess I’m wanting to ask, how has this been for you? I worry so much. I moved to the UK from California 10 years ago to be with my husband. I’m scared. 

I just saw your post and your mood seems good. To everyone who can read this I really wish you the best. 

Thank you and I do hope everyone is doing well. 

Cari :)

Dear Cari,

Thanks for your email. I am sorry to hear about your husband diagnosis. I can imagine what is like going through all those emotions and I know is not easy.

At first I almost felt in total denial, later on my way of coping was believing once I have the operation I will be fine. My operation was in December 2018, had few scans since and tomorrow (07.09.2019) is another one. All the scans showed clear apart from a single lymph node, righ in the middle of my chest area. ( 3 month ago it was shy of 1 cm), fingers crossed it hasn't grown anymore. I was offered the trial as well but for some reason I declined until had a much better picture of how my body was coping pos op.

Life indeed turned into a rollercoater of emotions but going back to work after 6 weeks of my operation has helped me to create a sense of normality.

It might sound strange for you as it is hard to explain but now I feel blessed in having to endure what I went through ( or perhaps even what I might have to go through...) I felt an internal and spiritual growth, an appreciation and respect for life and what it throws at us. I took it as an opportunity even though I know it might sound strange.

If I could give you a word of advice I would say don't be scared but I know it is easier said than done.

Acceptance and love works wonder and even performes miracles.

This cancer I had, it was in my body but not on me.

I wish the best for you and your husband and keep the positivity, hope all goes well with the trial.

Thank you and keep in touch.

Much love,

Monicabee

Dear Monicabee,

Thank you so, so much for your email. We've had a tough month. My husband started the RAMPART trial and a week later was admitted for EXTREME collitis. A few doses of steroids and he was out the next day. He had his second  infusions last week and today, a week later, here we go again but not as bad. What is worse is his fatigue and stiffness from the drugs he's receiving for the treatment. As a GP himself, he feels this is a way to help himself and maybe his own patients. He's seen a lot oitf RCC patients not make it, I was surprised to find that out. 

His tumor was also necrotic and contained a blood clot running through it. He is slowly returning to work, 2 hours, 3 days per week. Then he moves up an hour here or there when ready. But he worked a bit Monday and has essentially been asleep and stiff/sore since his treatment a week ago. He can't take anti inflammatory meds because they affect kidney function and creat. clearance, paracetamol isn't helping so much and he refuses to touch his pain medication because it causes constipation and cramping for him. So it sucks. 

I'm sorry to be monopolosing your post, I'm just worried. At 3 litres of fluids a day he still feels dehydrated, he barely touched food yesterday or today and he's been asleep most of his free time. I'll admit, I need to calm down but I am new at this and we don't have kids so we're pretty much all we have besides parents and my dad lives back where I'm from in California, my husband's parents live on an island off the Scottish coast. So we really depend on each other. 

I won't take over this post anymore, again I'm sorry. It's helpful to see that someone with similar staging has developed a positive outlook. Thanks so very much. 

Cari x

Hello and thanks for posting,

I understand your post was intended for the person who started this thread but just wanted to drop you a line as well.

I am sorry to hear about your husbands situation and the unpleasant side effects he is experiencing, this must be such a difficult time for you both.

It is understandable to feel quite helpless in circumstances like this when your loved one is suffering. Do make sure he lets his team know about any new problems he has as there may have suggestions about things that could help him.

If you have any questions you would like to ask the nurses do get in touch, or if you would like to talk to us on the telephone our number is 0808 800 4040, we are here Monday to Friday 9am till 5pm.

Wishing you both all the best.

Take care,

Naomi

Good morning Cari,

Thanks for your reply. sorry about the delay replying. 

i am so sorry to hear that you both are going through such ordeal. Hopefully by now things are getting better. As I wrote  before I was also offered the same trial but I declined as it was far too soon for such rushed decision in my view. 

I know those trials are as the word says  a bit of a hit and miss... 

My next appoint with the consult is in January and I still haven’t heard from my last scan which was on the 7th September. Maybe no news is good news. 

I do hope your husband is feeling much better by now and I wish I could help somehow. I know meditation is a powerful tool to get back in touch with ourselves  

Sending lots of  love to both of you  

There is always hope and if you are going through hell. As they say, just keeping going ...

Wishing all the best  

Much love,

Monicabee