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newly diagnosed mRCC

amandac2018's picture
amandac2018
Posts: 26
Joined: Feb 2018

Hi there I am new to your forum and have been reading all your positive posts and kind words. My 2nd cat scan results came back today (1 year since radical nephrectomy) I have 9 nodules between both lungs and also have a pleural mestatasis. Not the best news I could have got, but looking forward to an appointment with an oncologist in the near future to get my treatment options on track. Thanks for listening

Manufred's picture
Manufred
Posts: 241
Joined: May 2017

A diagnosis like that is tough, however there are a range of options for you so be positive.

Ask your oncologist about the latest trends for treating mRCC.  I personally am a poster boy for immunotherapy (Ipi/Nivo combination, Checkmate 214 trial) and full details are on my "About me" page.

Best wishes.

 

amandac2018's picture
amandac2018
Posts: 26
Joined: Feb 2018

Thanks so much for the information. I am learning so much from this site. 

MFoster
Posts: 17
Joined: Sep 2017

I'm sorry you are fighting RCC. I'm praying for a solid plan and healing. What stage were you originally diagnosed with?

amandac2018's picture
amandac2018
Posts: 26
Joined: Feb 2018

Originally I was told after the radical nephrectomy 'we got it all', of course cancer can be so sneaky. I waited for 6 months for my first cat scan and unfortunately during that time my tumor grew to 10 cm. I think that means I was Stage 2. I tried not to look at my reports in that first year...will revisit that now. Thanks so much for your kind words

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

Hi. I hope you get the best care possible and that your treatment is successful. All the best for you!

amandac2018's picture
amandac2018
Posts: 26
Joined: Feb 2018

Thank you AnnisaP, big hugs.

 

ImNotDeadYet's picture
ImNotDeadYet
Posts: 244
Joined: Apr 2017

Hi Amanda. Your story sounds a bit similar to mine. I'm just over one year out and will soon be starting Votrient for my lung nodules. There are definitely a number of options, and I'm sure your oncologist will go over them all with you. Sorry you have to deal with this too. Keep us posted on your progress and what treatment you end up pursuing. From a purley selfish perspective, I am eager to hear stories and results from people with similar situations to mine. Hang in there - it will get better.

Gary

amandac2018's picture
amandac2018
Posts: 26
Joined: Feb 2018

hi Gary, I have read a number of your posts. I sure hope you get good results from Votrient! I still have not heard when my oncologist appointment is...the waiting AGAIN is tough! I understand the 'selfish perspective', although it is so hard to read about others that have to go through this ****, it also makes me realize I  don't have to go through this alone! My dad had a radical nephrectomy almost 7 years ago and 18 months later he was stage 4 mRCC. He is living proof the meds can help!! He is on Sutinib, and has been since 18 months after his nephrectomy. I look forward to hearing positive things from your treatment too!

foxhd's picture
foxhd
Posts: 3183
Joined: Oct 2011

 You will prepared to have a future of close health monitoring. So learn to recognize that you are fortunate to be given a chance to fullfill your commitment to not squandering your life. Better outlook, better nutrition, better appreciation of all that really matters. Just be ready for surprises. Mostly, believe in yourself. You can do it.

amandac2018's picture
amandac2018
Posts: 26
Joined: Feb 2018

Thanks for the positive words. most days i am a pretty positive person, the nasty thoughts niggle into my brain every now and then, once I get into to see the oncologist and have a plan. My dad will be 5 years on Sutinib in June of this year, and he was stage 4 mRCC! I know it is possible to have the outcome we all hope for.

 

amandac2018's picture
amandac2018
Posts: 26
Joined: Feb 2018

Happy to report i have an oncologist appointment now on March 6 2018. few blood tests next week and a muga scan. I was happy with all this until i got a call from my family doctor today telling me they want to do a lung biopsy!! i am such a wimp when it comes to needles. i dealt with all this news in the past 3 weeks along with the radical nephrectomy last year better than the thought of the needle biopsy. Blech!!!! but knowledge is power!! so anything they do will keep me on the path of healing. thanks for listening..

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

The lung biopsy is a piece of cake, takes about 15 minutes and it really doesnt hurt, good luck

amandac2018's picture
amandac2018
Posts: 26
Joined: Feb 2018

 this week. I saw my oncologist on March 6th,.he is awesome. He trained under Dr Heng in Calgary and is a medical oncologist who treats kidney cancer patients. He is young, super easy to talk to and I am feeling very confident being in his care. I had another cat scan for abdomen and pelvis, they look good. I got through my lung biopsy, unfortunately the tissue sample was too small, but I don't have to do another one. I have a bone scan on the 14th. As I mentioned in another post, I am definitely more worried about the possible SE than the cancer at this point, I work full time, look after my 120 lb dog and generally feel fine. We shall see. At least thanks to all the posters here I am armed with knowledge to help combat SE. I do have 10 mets bi-laterally and one is quite large at almost 6cm, my dad has been on Sutent everyday for almost 4.5 years and is doing fine, I am hoping to follow in his footsteps. Wishing you all positive thoughts and good scans :)

amandac2018's picture
amandac2018
Posts: 26
Joined: Feb 2018

 

Muga Scan - normal

Abdominal and pelvi cat scan- no signs of lesions

lung biopsy - inconclusive

Bone Scan - one small spot at T3 they will scan again in 3 months.

All in all good news, that means we are just treating the lesions on my lungs and I am just waiting to hear from the pharmacist that I can pick up my prescription for Sutinib. 

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