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New Here- Please Help

Jamkelso's picture
Jamkelso
Posts: 7
Joined: Oct 2017

Hi Everyone,

I’ve debated posting and figured it would be easier than scouting through all of the posts on here to see if I can relate to any, which is what I normally do.

My dad is the person who has CCRCC. It was discovered in September, when my 4 year old son jumped on his side while he was laying down. It’s been a bit of a roller coaster. His tumor was only 4.1 cm, so we were told that they could resect it, and there was a 90% cure rate. He did have some nodules on his lungs, but docs weren’t concerned because they thought it was from his line of work. (He does concrete work)

He had a partial nephrectomy in October. Even after the surgery, we were told everything went well, never once thought that things could be worse until we were blindsided with pathology results. It turned out that he had a Stage 3 grade 4 tumor. Because of this, the lung nodules were more alarming. They did a broncoscopy to no avail, so all we could do was wait for another scan. Last week we got the news we were dreading. It was lung mets. 7 small nodules and 2 lymph nodes.  So now his 90% curable tumor has turned into stage 4 grade 4 CCRCC. He started votrient 4 days ago. I guess I’m just looking to see if there is anyone out there that has been living with this at stage 4 grade 4. I’ve read a lot of people doing well with stage 4, but I haven’t really read what the grade of their tumor is. I know that a grade 4 is the worst you can have, but there’s got to be some people out there that have been fighting it?? 

My dad is 56 and healthy (taking the cancer out of the equation). He was doing concrete work up until the day he was diagnosed. I have a 4 year old and a 2 year old that are absolutely obsessed with him, and although I’m a parent myself, I still need my dad around. If anyone has any insight, please share!

Thanks for reading 

stevez
Posts: 51
Joined: Dec 2017

Thinking of you and praying for you.  I hadn't responded earlier as I don't have any information to share that's relative.  I'm very new to this.  But, wanted you to know that someone has read your story and is thinking of you even if I can't help.  God Bless.  Steve

APny's picture
APny
Posts: 1998
Joined: Mar 2014

I'm so sorry. I too am thinking of you and hoping for the best. There are quite a few people on this forum who have been living with stage 4 cancer for a long time now. They will chime in, I'm sure. There are so many drugs out there and more are discovered each day. Hopefully one of them will work for your dad and your children and you will have him around for a long time.

AnnissaP's picture
AnnissaP
Posts: 632
Joined: Sep 2017

Hi. I am so sorry to hear about your dad. APny is right. You will get some good advice from a few people living with this. I cannot be of any help at this time so for that I apologize. I wish you and your family all of the best. People will comment on your post soon!!

Jamkelso's picture
Jamkelso
Posts: 7
Joined: Oct 2017

Thank you all for your thoughts and words- they are very much appreciated! Sorry I didn’t respond sooner; every time I tried, it kept telling me the website was having an Error.  

I guess I’m just looking for some hope as well as some expectations. 

Wehavenotimeatall
Posts: 489
Joined: Aug 2017

well first of all I am so sorry you are here

It is a terrible shock and takes a lot to absorb .. 

You and your Daddy are truly beautiful and we will be here supporting  you any time you want

Right ok

1)It seems to have taken a long time for you to get to this stage...  was there a reason for the delay.

2)the nodules are small so whilst it is terrible there are there ... there is lots of hope that he will respond to one of the many treatments 

how is he coping with votrient?

 

3) have you got a good oncologist and team.

i cant comment on the treatments but I really hope you get a good response...

 

Keep us posted

Annie

Jamkelso's picture
Jamkelso
Posts: 7
Joined: Oct 2017

Hi Annie,

thank you very much!

Originally he was at an absolutely terrible hospital. He obviously had no clue that he was going to be getting the diagnosis that he did, so he just went to the hospital close to his house because he was in a lot of pain. He was admitted after midnight on a Friday, and they discharged him Sunday morning. He headed back to the ER that same day because his pain was terrible (this is coming from a guy that separates his shoulder and goes to work the next day). I’m from st louis, not sure if you’re familiar with any of the hospitals around here, but I told him to go to Barnes because that‘s where siteman doctors work out of. Once he would be admitted he would be being seen by some of the best onc doctors in our area And wouldn’t have to worry about switching over. Unfortunately, there was a 6hr wait in the ER (it’s a huge city hospital). He couldn’t withstand the pain for that long, so they went back to the other hospital. 

So we‘re back at the terrible hospital. He ended up having the surgery there because he just was in so much pain he couldn’t deal with switching and finding a new doc. He was also comfortable with the urologist that did the surgery. We were told about the lung nodules by an out of breath hospitalist. He started by saying that there was one nodule, then one turned into two, by the end of the conversation he had slipped something in there about lymph nodes too. 

So my Dad had a PET scan. I didn’t actually talk to the urologist about the results but my dad is adamant that he said it was all good and nothing glowed. We had never heard back from the pulmonologis, so my mom ended up calling them. We found out the night before his morning surgery, that 2 lymph nodes on his lungs had glowed. The next day the urologist told us that he wasn’t concerned about the PET scan and that it wouldn’t change his course of action. We really felt like we had no choice but to go through with the surgery. Although now I feel like anyone that I hear about having metastasized ccrcc has a total nephrectomy, so I’m worried that him only having a partial could have left some cancerous cells behind?

surgery went well, the doctor said it was tricky because of the location of the tumor, but that everything went “perfectly”. Here we are celebrating thinking everything’s great and they got all of the cancer and he’ll be fine. Fast forward 2 days later, we get path back and it’s now a stage 3 grade 4 tumor. The broncoscopy didn’t get any good samples, so we just waited. It was a long process with a lot of ups and downs, one minute we think it’s good, next it’s bad, then we’re back to good, unfortunately we had to end on the bad.

We are with a good doctor now, but once his insurance changes in January, I still want him to see another doctor that was referred to us, just to make sure we’re doing all that we can.

tomorrow he will have been on votrient for a week, he seems to be handling it pretty well, although he’s pretty good at pretending he’s doing good ;)

His outlook is amazing. He says he’s got at least five years but gonna shoot for 12. 

the size of his nodules are small, I don’t think it’s great that they’re in both lungs, but it could be worse. One lymph node stayed the same after the 3 months and one only got .1 mm bigger- so that’s good!  I’m just really hung up on the grade of the tumor. Does that mean that It won’t respond to the drug as well or for as long? The doctor said its growing at a rate that if he did nothing, it would double in size in 4 months. 

Okay I swear I really tried to keep this short!! I just kept rambling and rambling- sorry!!! 

 

Jamie 

 

Wehavenotimeatall
Posts: 489
Joined: Aug 2017

Oh not the best of starts I agree but

surgery is done.. and   nocules are very small

i am still confused as you are on the option of doing a partial if the stage came back as 3

I cant comment on the efficiency of the drugs as I have no direct experience but there are lots of people with grade 4 still living a normal life.. well as normal as it can be with cancer in your life

 pray someone responses very soon

we are always here 

 

Annie

Jamkelso's picture
Jamkelso
Posts: 7
Joined: Oct 2017

Well they did the partial and said that was the right move. Even the oncologist said that was the right move, but I’m wondering if they are just saying that because it’s already done? I feel like most cases of stage 3 or 4 is a total nephrectomy, am I wrong?

Mandakf's picture
Mandakf
Posts: 11
Joined: Aug 2017

Are they worried about the function of the good kidney? Or cx possibly moving into the good kidney?  That could be why, they spared it.  Am I understanding that they staged it after surgery with pathology results from the surgery?  When I had my surgery they couldn’t even tell me I for sure had cx until after partial nephrectomy pathology results came back.  So they did the sparing surgery and then found out it was Worse than anticipated?  They will keep a close eye on it and won’t want to go back in unless they have too.

kiwi68's picture
kiwi68
Posts: 110
Joined: Oct 2017

Sorry you have to be here.   You sound like you are finding out as much as you can and will be a great support and advocate for your Dad.  Something your Dad will appreciate hugely as he goes on this journey. 

Your Dad has had a rough start because he started off as an emergency case.   Do know that for nearly all of us there is no pathology that can grade the tumour until after surgery.  Size and location can give an indication of if it needs to be be partial, radical, laproscopic or open, but that pathology is the gold standard for what the 'thing' actually was. 

Re your Dad's lung nodules, I would say that different radiologist and Dr's will have differing opinions on a previoulsy unknown and  unexamined case.   Patholgoy from scans, from biopsy are all different for different organs and presentations for mets/tumours/nodules and cysts.  You mention your Dad has worked with concrete, I have a Dad who is a toxicologist who specialises in disease from asbestosiand agricultural chemicals so I grew up around someone who did bladder and lung cancer studies for a living.   Your Dad's profession and the small tumour size might have led some of the medical professionals  to consider if his nodules etc were to do with his profession and not mets from his RCC. 

It seems that you are on the right track now with a dedicated team of specialists and hopefully he won't have to go the ER route for further medical or surgical treatment.  It doesn't delivery very much (if any) continuity or consistency of care.   Fair enough it is for 'emergency medicine' but that isn't much consolatio when you are suffering through treatment there. 

I am sure some of the people here who have the same treatments and diagnosis will be much more informative on the challenges you now both face. 

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