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Kidney Cancer - possible nodules in lungs.

Dinaken
Posts: 10
Joined: Dec 2019

Hello All,

My father had kidney removed due to a renal mass of size 11cm × 8.2cm, and waiting for biopsy report. Also found multiple lung nodules with small one being 3mm and bigger one to be 7mm. We have a query metastasis, but worrying about the report outcome. As if now doctor have prescribed for immunosuprresant,

and not biopsy for lungs nodules. I'm looking for positive vibes, any information will be helpful. Thanks!! 

 

eug91's picture
eug91
Posts: 255
Joined: Jan 2019

Sorry you had to join us, but this is a great forum here. We know what you and your father are going through. We made it through, so we know you'll be okay, too. 

My experience with lung nodules is probably not helpful, but my nodules were identified as not being mets - they were listed on a Chest CT scan as calcified and non-calcified sub-centimeter nodules. Did your x-ray/CT scan say anything specific about your father's lung nodules? 

There are some folks on this board who did have lung nodules that were biopsied as mets and were treated. Hopefully one of them will be able to chime in. 

Sending you positive thoughts!

Dinaken
Posts: 10
Joined: Dec 2019

Thank you so much for the kind words. The impressions in the report says, mulitple small nodules in both lungs. Doctors said no need to to biopsy, its a mets only. They said there is no life threatening situation now, will be given medication( after consulting with oncologist) and have to do a follow-up. 

Allochka's picture
Allochka
Posts: 922
Joined: Nov 2014

Hello,

even if these are mets - this is faaaar from the end of journey. Many people here had therapy, some are living full lives, some are NED!

Dinaken
Posts: 10
Joined: Dec 2019

The report came as papillary rcc. Doctors have confirmed it's Mets in lungs, but said only kidney and tumor was removed. All margins were clear around kidney are negative for maligancy. I'm getting panic attacks very often, I'm trying to be normal. Have a follow up with oncologist in a week. Firstly I need to get strong to make my feel dad better. My father expressed his discomfortable for making him worrier whenever I talked to him. 

eug91's picture
eug91
Posts: 255
Joined: Jan 2019

I assume you've already googled about RCC. Keep in mind that most of the information out there on Google is REALLY OUTDATED. With so many modern treatments available, your dad could have complete remission, your dad could have years of nothing new/nothing grew. There're members on this forum who were stage 4 and have lived for decades. Your dad's original tumor was caught and removed, the margins were clear, and the lung nodules are small - all good news. So you have reason to hope! 

Two bits of advice-

1. Consider signing up at smartpatients.com. It's another terrific forum and depending on what your oncologist says, it might be good to get more opinions as your father moves forward. While the medications can be really effective, you'll want to get ahead of any possible side-effects - and possible other treatments that could be considered (ablation and such). 

2. You should consider seeing a therapist or doctor about your panic attacks. Especially if your dad has already expressed his concern for your worry. Years before I was even diagnosed with RCC, I learned to better handle panic attacks with the help of a therapist and doctor. Do it for yourself, do it for your dad. 

Good luck! Let us know how how it goes - we're here for ya.

 

Dinaken
Posts: 10
Joined: Dec 2019

Hello Eug91,

 

Thanks for the detailed insights. Really appreciate the help. You are right, googling the prognosis of stage 4 are literally scary. So the doctors said, dad can make 10+ or beyond that depends on how his body takes it and respond. I have few queries, probably you can help me in,

 

1. How long will the Mets in lungs take to move to other organs. 

2. Do I need to tell my dad about stage 4 facts and statistics, as I have read all these I'm anxious, I don't want to scare him meanwhile I want him to be aware, so I'm confused.

 

Between I have seen your profile and happy about your recovery. I will be checking the smartpatients.com as well.

a_oaklee
Posts: 523
Joined: Nov 2013

Sorry, I just had to jump in here.  Please dont offer up information to your father about survival stats or his prognosis.  If he wants to know, he should be the one to ask, and that information should come from the doctor and not you.   As a loved one, just be a good listener, be supportive, give encouragement.  

Besides all of the above, just make sure he understands treatment options.  There might be multiple choices, including radiation therapy to the lung mets.  Perhaps you can attend his dr appointment and take notes....but dont takeover.  Second opinions may be a good choice also.  

Re mets creating mets.....With Stage 4 it means that cancer cells have traveled through the blood stream from the primary tumor.  Your dads traveled to the lungs.  It is the most common site.  My husbands traveled to his bones and lymph nodes.  We get frequent scans to just catch anything that pops up at a new location early.  

As previously stated above, plenty of people are living years as a stage 4 person.  My husband was diagnosed 8 years ago.

Take care of yourself.  Go to see your doctor if you need help coping with all of this.  I certainly needed help, as do many other loved ones.

Dinaken
Posts: 10
Joined: Dec 2019

You are absolutely correct, qualified doctors should be the one communicate the problem. But my concerns are my father is easy going person, which to me has both pro's and cons. Because for past two years he had anemia and haeomoglobin level is less than 6, but he ignored that went to a traditional medicine where they didn't even bother to do a scan. Else,he could have been stopped at stage 1 or stage 2, ie why I felt a need to inform him about these, but again I m thinking of asking the doctor to convey him the necessary precautions. I'm praying for your husband, for complete recovery. May I ask are there any food and lifestyle choices that you guys are following for the past 8 years. Thanks !!

Apaugh's picture
Apaugh
Posts: 856
Joined: Aug 2016

prayers going up for better days and woderful outcomes.  fight fight fight.

 

eug91's picture
eug91
Posts: 255
Joined: Jan 2019

1. Just because you have mets in the lungs does not necessarily mean the cancer will spread. It might spread, it might not. You have reasons to be optimistic - the lung mets are small, the kidney tumor is gone, and the margins were good. Depending on what your oncologist says, your dad might be put on treatment, then they'll check back in a few months and scan again and compare to the previous scan to see how the treatment is doing. Ie, are the mets growing? Have they stopped growing? Are there new ones? Have they gone away? Etc. 

If you haven't already, jot down your questions for the oncologist on paper or on your phone and bring them so you can ask. 

2. What a_oaklee said. As for your worries, I can say I was terrified by what I googled when I first got diagnosed. But as people point out, the statistics online are years old, and medical advances in kidney cancer are happening really quickly. Case in point, the five-year survival rate for stage 4 was 8%, then it was 12%, and just this month the UTSW announced they'd gotten stage 4 survival rates to 25%. 

Since it sounds like you're dealing with anxiety/panic about this, you might be best following a_oaklee's advice above.

You've got this! Good luck! 

a_oaklee
Posts: 523
Joined: Nov 2013

Such a lovely group of people here.  

Dinaken
Posts: 10
Joined: Dec 2019

Thanks again for your insights. The sources I'm reading about mets especially in case papillary rcc is not encouraging one . It is being  stated as aggressive and can reoccur, again I'm just googlng. My father said it could be genetic, since my grandfather had something like that. My father is currently 55, I'm not sure about the age and the treatment responsiveness to go for remission state . 

a_oaklee
Posts: 523
Joined: Nov 2013

Most of my knowledge is about clear cell RCC.  I do think Papillary has 2 types, and the prognosis differs between Type 1 papillary and Type 2 Papillary with re to Stage 4.   

I believe that your dads cancer started well before two years ago.  We think my husbands was growing for 10 years prior to him having any symptoms.  He has clear cell and a 5 cm tumor.  Supposedly, the growth rate was 1/2 a cm a year.

In answer to your question re changes made to lifestyle or nutrition.  He hasnt made any changes.  Hes always been a nonsmoker and nondrinker, and a very healthy person. 

My husband made a choice of not wanting to know prognosis, or anything related to this disease.  No research whatsoever, and he didnt want me to tell him anything.  Its his life and his choice.  He is a very good patient and does do what he is told.  I asked him why he doesnt want to know the prognosis and he said hes afraid he would just give up.   So, we do what works for him.  

I want to share with you why i dont like survival statistics.  In 2012, stage 4 CC RCC had a 5% 5 yr survival rate.  5 people out of 100 could live 5 years.  The thing you dont know with stats is where you are as an individual in that spectrum.

All I wanted you to think about is whether or not your dad will benefit knowing statistics, or would it be detrimental to his ability to be happy, and continue treatment?  

eug91's picture
eug91
Posts: 255
Joined: Jan 2019

I'm trying to eat healthier and exercise more to keep the weight down since my neph. But the big change has been to drink more water to keep my one existing kidney happy and healthy. 

Dinaken
Posts: 10
Joined: Dec 2019

Met the oncologist today, and was asked for PET scan, and one of the oncologist said prognosis will be less than year. We are completely devastated hearing this, main Dean doctor said don't lose hope, drug could work differently for everyone. As if now he had only lung nodules, I don't understand why he gave such prognosis. 

Hd67xlch's picture
Hd67xlch
Posts: 148
Joined: Apr 2016

 I replied to your earlier post thinking your father only had a 3mm and 7mm nodule, but now I see you are saying multiple nodules in both lungs, so my orginal post is not appropriate for your fathers situation, so I edited it. If it had only been the the 3 and 7mm nodules I would have suggested surgery or ablation, but thats not your situation, wishing your Dad the best of luck.

annie4145
Posts: 182
Joined: Jul 2018

Please don't lose hope or accept a comment that was totally inappropriate and shouldn't have been made.  I will tell you a story.  It is not a cancer story, but it shows how wrong doctors can sometimes be. 

My child was extremely delayed in speaking when he was young.  He was eventually diagnosed with apraxia at 3-1/2.   At age 2, he was tested by a pediatric neurologist at Lucile Packard Children's Hospital (stanford) who performed an MRI.  We were told that there might be an issue with his myelin in his brain and that he probably would never speak normally.  ("He won't be doing a job that requires speaking for a living."   Well fast forward 11 years, we have a normal speaking teenager who wants to be a lawyer.   The doctor made a pronouncement that left us devestated at the time and turned out to be totally wrong.  Good luck proving your doctor wrong!! 

Dinaken
Posts: 10
Joined: Dec 2019

Hello Annie,

Thanks a lot for the positive words and giving lot of hope. I'm still in the process of embracing it and moving further. Our family is working on it. Im coming across wonderful persons like you from this forum, which really making a difference to me personally and I'm grateful for that. Between it's really inspiring and glad to hear about your son doing well, despite the doctors words. I wish you and your family a happy Christmas and happy new year.

stub1969's picture
stub1969
Posts: 864
Joined: Jul 2016

I'm sorry to hear about the journey your dad is on and the impact it is having on you and the rest of the family.  I've been reading and following this thread and firmly believe that you have gotten solid advice from our members.  Your last post causes some concern for me.  My question to you is about the qualifications of the doctor you are seeing.  Is he/she an RCC expert?  Ask your doctor for a second opinion.  If he/she becomes upset--too bad.  New drugs, new treatments, clinical trials...don't close the casket yet. 

As eug91 recommended, check out smartpatients.com and post your story.  The majority of the members of that site are stage 4 and they can offer a lot of advice and options.  Build your knowledge from their experiences and use this knowledge with your care team.

Good luck!

Stub  

Dinaken
Posts: 10
Joined: Dec 2019

Hello stub,

From the begining this forum members really gave me hope and more insights. I'm extremely grateful and also have posted the problem in smartpatients.com as many suggested. I'm currently residing in Pennsylvania, and have contacted UTSW for any clinical trials available, waiting to hear back from them. Since I'm completely new, are clinical trails safe to start with, just on a cautious side. Regarding the oncologist not sure whether he is RCC specialist, I couldn't able to meet the oncologist that day, my family only met them. I m trying to find more hope and optimistic. 

 

Regards,

Dinaken

a_oaklee
Posts: 523
Joined: Nov 2013

I dont understand your post re what doctors your dad has seen.  It sounds like you are saying he has seen two.  One was hopeful and the other doctor less hopeful?  What is their specialty?

Your dad should see a urologic oncologist with experience.  We went to a major medical center, teaching hospital for a second opinion, and then to another major hospital for a third opinion.  All the opinions differed.  We had to choose what we wanted to do.  It was one of the hardest things for us to deal with.  Having "choices "  was actually necessary, but difficult.  Our RCC experts had very different ideas.  Gain as much knowledge as you can, and go with the expert that you trust.

Re prognosis.  It is an educated guess.  My husband had 6 months.  Its been 8 years.   Every person responds differently to treatment.  Noone is exactly the same in how their disease process behaves. 

Its very good that a PET scan was ordered.  Dont be surprised if they also do a brain scan.  They want to know exactly what is going on in order to offer the best treatment going forward.

55 is not old.  Actually it is a common age to get diagnosed.  My husband was 65.   

Im very glad that you are also on smart patients.  You will get very good support there and will find other papillary patients.  

Im not very familiar with clinical trials.  I respect and appreciate people who are willing to participate.  Try doing a search on why people choose clinical trials.  In my husbands case, back in 2012, all that was available was targeted therapy.  Pills.  It was fast and convenient to get started immediately.  Our insurance helped.  No travel necessary.   Treatment isnt stagnant.  He does something until it no longer works, and then he tries something else.  

Please take care of yourself too.  I hope your dad can start treatment soon.

Dinaken
Posts: 10
Joined: Dec 2019

Thanks for the reply. The hospital we are seeing is a medium multi-speciality hospital. Only few oncologist are there and not anyone specialized in RCC related. We have made the decision to switch to a bigger medical institute which is 5 hours drive, from our place. I somehow convinced my father to go there and start the initial treatment. We are waiting for the appointment, hopefully we will get soon. Yes, regrading the prognosis, I have seen lot of stage 4 survivors on smartpatients.com and Facebook group, which is really a positive one and gives hopes for us. Somehow my father figured out something has to be done quickly, he is not aware of the stage 4 and prognosis yet. My biggest challenge is embracing all of these, and moving forward. Praying and keeping hope with the upcoming treatment. 

annie4145
Posts: 182
Joined: Jul 2018

If you need any help, American Cancer Society can sometimes help arrange reduced cost hotel stays, or perhaps there is some residences associated with the hospital.  (USCF has a hotel for patients from out of town.). 

lobbyist0724's picture
lobbyist0724
Posts: 418
Joined: Sep 2016

Hi Dinaken, don't lose hope at all. Prognosis given is just statistics based on a large population, but to a single patient, it is simple a yes or no. Take a look at the study below, where albation and systematic treatment being used together and the 5 yrs Overall survival is over 60%!! 

Also, there are numerous cases in this forum who beat the prognosis given, a well k own legend here is Fox, whow were given similar prognosis as your dad but lived over 7 years! Best wishes!

https://www.urotoday.com/recent-abstracts/urologic-oncology/renal-cancer/117840-renal-cell-carcinoma-lung-metastases-treated-by-radiofrequency-ablation-integrated-with-systemic-treatments-over-10-years-of-experience.html

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