Just looking for support. Anxiety level = 1000

monnocco
monnocco Member Posts: 14 Member
edited May 13 in Kidney Cancer #1

I'm a 44 year old male. I was in Argentina (my home country) on vacation and the last day I had a horrible pain on my lower back. I went to the ER d after an all day stay and lots of meds, they told me they found kidney stones. The ER doctor seriously recommended seeing an Urologist when I return to the US because there were two "cysts" on my kidney (one in each 3.7cm on the right, and 2.5cm on the left).

My urologist considered it an "incidental finding". A couple months later (Sept 2023) I had a partial Nephrectomy on my right kidney with a "clear margin" result. I was so happy! No chemo or anything else needed.

But the follow up visit (in two weeks) is to see the left kidney's "cyst". The doctor thinks it has a blood supply and most likely will have to be removed.

I do not have children, but I am married, and I keep thinking I am going to die. I keep having anxiety and I keep finding myself fighting fears all day long. I've been going to therapy for a couple of years for other issues and she is amazing, but I feel like that is not helping me with this. I have the need to talk to other people who have been thru the same thing or similar.

I am actively looking for a cancer support group in person, but it is hard to find. I live in Jersey City, NJ, but they seem to be far from me. Weird.

Reading some of your stories and concerns makes me feel understood.

#F-Cancer!

Comments

  • AliceB1950
    AliceB1950 Member Posts: 244 Member
    #2

    Your first partial went great, why do you think the results would be different this time? That one on your left kudney is also small enough that they may offer you ablation as a way to remove it.

    I'd suggest reading several other posts on the kidney cancer part of this site. You'll find some other people who have had both kidneys involved, and continue to do well.

  • eug91
    eug91 Member Posts: 471 Member
    #3

    Welcome monnocco-

    I'm glad you found us. We've been through what you're going through, so we know you're going to do great. We're here for you.

    First off, congrats on getting through your neph! Hopefully you're healing up well.

    The anxiety is normal. As FoxHD used to say, it's a shock to be diagnosed with cancer. There are no do-overs, but here you are. You have a good prognosis. With more time you'll be okay. Try not to waste time on the negative thoughts. We're all living with the c-word, not dying from it. Live or die, move forward.

    I'm five years past my diagnosis. The fear/anxiety doesn't go away, but I learned to get used to it and find ways to cope with it when it rears its ugly head at me. I'm confident you'll do the same.

    You're gonna do great - you've got this!

  • monnocco
    monnocco Member Posts: 14 Member
    #4
    https://csn.cancer.org/discussion/comment/1712831#Comment_1712831

    Thanks for mentioning ablation. I will definitely discuss it with my doctor on my follow up visit next week. I am currently doing scans and blood work and all that good stuff so we can talk with him about what the next step is. ☺️

  • monnocco
    monnocco Member Posts: 14 Member
    #5
    https://csn.cancer.org/discussion/comment/1712848#Comment_1712848

    Your comments and replies have put a HUGE smile on my face. I feel like I found my tribe and the support is greatly appreciated. Sharing a little bit about your story helps a lot, as well. I appreciate the cheering up!!! ☺️

  • monnocco
    monnocco Member Posts: 14 Member
    #6
    https://csn.cancer.org/discussion/comment/1712831#Comment_1712831

    I forgot to reply to your question about why I think it's going to be different this time. Because the fears I have make me think that it jumped somewhere else, that my other organs are getting affected by it. If I get dizzy, the first thing I think it's "a tumor in my brain", shortness of breath... "a tumor in my lungs".

    I have been really good by not reading Dr. Google's stories or even about kidney cancer... I also understand that each case if different. I am learning more by reading about it on this forum. So, I guess it's just my anxiety placing thoughts and fears in me about my next follow up.

    At the same time, I try to enjoy every get together with my friends, every visit with my family, every walk with my doggie, every dinner with my husband. But this thing (fearful thought) keeps creeping in. It's crazy!

    Again, thanks for "reading" me. 🙌

  • Allochka
    Allochka Member Posts: 1,074 Member
    #7

    Hello Monnocco!

    Sorry for cancer diagnosis :-(

    I totally understand your anxiety - I am hypochondriac :-( It is my husband who had Stage 1 kidney cancer 9 years ago. He was never worried, and is not worried now. But me - everytime he coughs I think “ mets to lung”, his knee hurts - “bone mets”… But it does get easier with time. Having harder moment now because his follow up is approaching. Honestly, anxiety is much worse than curable Stage 1 kidney cancer! Please try to get a grip on this anxiety. The second tumor will be taken out and you will live healthy for many years to come, but anxiety could really mess with you :-(

    This forum is VERY helpful to realize that kidney cancer Stage 1 is not the end! Forum will definitely keep you sane!

    But second tumor has to be removed, and to be honest, I’d vote for surgery, not ablation.

    Surgery will allow you to get pathology and determine the type of tumor. Perhaps it is another subtype of kidney cancer? Or smth benign? Perhaps it is even not a tumor, but cyst? Also, after ablation you won’t be sure if it is eradicated. And surgery will give you clear margins and piece of mind ( an important thing for someone with anxiety).

    You are young and can handle one more surgery with no issues.

    Please hold on, keep us posted and do not dismiss surgery, if possible. Hugs!

    Alla

  • monnocco
    monnocco Member Posts: 14 Member
    #8

    Alla, thanks so much!

    you clearly have been thru it with your husband and I appreciate the feedback and recommendations so much. It does help me.

    I will def keep you all posted. ☺️

  • Allochka
    Allochka Member Posts: 1,074 Member
    #9

    You are welcome! I am sure it is gonna be allright, just look at this discussion board - kidney cancer Stage 1 is the one to have if you are destined to get some kind of cancer.

    Hug your husband, prepare detailed questions for your doc appointment and try to believe us that you will be fine!

  • Deanie0916
    Deanie0916 Member Posts: 628 Member
    #10

    Hi Monnocco, sorry for those stupid cysts, but I pray you get the second one out soon and then go about your life with the occasional follow up scans. The cysts are pretty small so I hope you'll be okay! All the best to you, please let us know how it's going! 🙏 ❤️

  • Mmoses25
    Mmoses25 Member Posts: 326 Member
    #11

    Sorry for your cyst I know it’s scary when I was dx almost four years ago the told me it’s going to be stage one well it wasn’t it was stage 3 and look I’m still here you can do this don’t stop living your life because of the c word live it to the fullest you got this you done it before this time it will be a breeze

  • monnocco
    monnocco Member Posts: 14 Member
    #12

    just a quick update, even though I don't know if you guys are still reading this... but it does help typing about it.

    I had my appt with the scan, x-ray, and lab results and reports, and the Dr. confirmed we need to have a second surgery to take out the other small tumor on my left kidney. I kind of knew this already, and I was just super anxious about the appt, but let me tell you that after having talked to him for not even 20 mins, I felt much much better.

    I am also going to see another oncologist that specializes in kidney cancer in NYC (I live in the area), and that is going to help me feel better. I just need a second opinion even though I basically already made the decision to have the surgery before the summer, BECAUSE I NEED TO ENJOY THIS SUMMER!!! lol! Last summer i just didn't cos I was dealing with the other surgery.

    The surgeon's scheduler already booked April 4 for my surgery, but I am going to give her the OK in a couple days. ( I wanna see the other Dr. first, just in case).

    I'm doing much better because the scans, X-Ray and blood work came out super good. Nothing else is compromised and my other organs are fine.

    Sending LOVE to all of you! and very grateful for this forum.

    Marco (monnocco).

  • Allochka
    Allochka Member Posts: 1,074 Member
    #13

    Good luck with the second surgery and keep us posted!

  • Mmoses25
    Mmoses25 Member Posts: 326 Member
    #14

    Good luck with your surgery your going to do great you got this

  • monnocco
    monnocco Member Posts: 14 Member
    #15

    I actually got to talk to a second professional (a Medical Oncologist) and he said he kind of suggested the cyst on the left kidney is not a bad one because it has grown very slowly in the last few years (I got a scan in 2018 that already showed it, but I never went deeper into that because no one told me it could be cancer). So he is more interested in doing genetic counseling only to confirm other things. He also told me that my current doctor being a urologist surgeon would recommend surgery. That said, the medical oncologist referred me to Dr. Ketan Badani (kidney cancer oncologist) from Mt. Sinai in NYC to see me and so I have the appt coming up on March 8.

    Will keep you posted.


    thanks everyone. it means a lot. you have no idea!

  • Allochka
    Allochka Member Posts: 1,074 Member
    #16

    Hello,

    How are you doing? What is the final decision?

  • monnocco
    monnocco Member Posts: 14 Member
    #17

    Hi! thanks for checking in. I was just about to post an update.

    So a couple weeks ago I had another partial nephrectomy on the left kidney this time and they removed a 3.3cm tumor (cancerous) and a tiny one (less than 1cm). Robotic and super easy to heal since it was performed by Dr. Badani from Mt. Sinai in NYC.

    The pathology report confirmed it was stage 1 kidney cancer (but we knew that), and also that there are no cancer cell left. So both kidneys are clear of cancer. We did genetic testing since there is no cancer history in my family (on either side). The results did not show what they were expecting, but there are a couple of gene mutations that could cause a syndrome in some people that is indirectly related to kidney cancer, so we're going to do genetic counseling now, just to prevent.

    And now the surveillance starts, with scans schedule for 3 months from now, and then 6, and then a year, etc. But I am extremely relieved that they took it all out with two partial nephrectomies. I do have a Nephrologist now to keep my kidneys healthy and functioning properly.

    I am also extremely thankful for this forum. ☺️

  • JasonG
    JasonG Member Posts: 5 Member
    #18
    https://csn.cancer.org/discussion/comment/1715252#Comment_1715252

    Awesome news, my friend. I have a similar story (I posted a previous thread about post). I woud be curious how your post life is. Please keep updating. Congratulateions on the sucessful surgeries and the clean margins. The scans dont get easier, btw :) most post cancer patients I talk to say the same. you always worry every ache and pain is cancer but then you get the scan and you are good until right before the next scan. All that being said, I would much rather have that worry than not knowing. Keep up the monitoring, thats important. If we learned anything its recognixing signs before it gets too bad. Best wishes to you and your family. warriors, bro!

  • monnocco
    monnocco Member Posts: 14 Member
    #19
    https://csn.cancer.org/discussion/comment/1715355#Comment_1715355

    Hi Jason,

    Yeah, I figure I will be super nervous before my next scan, but I am really trying to enjoy every minute of my days now. It is crazy how my perspective of life has changed. It's been a very dark year (since last July when they saw them on the scan for the first time). And even my birthday is coming up and I'm going to make it a super special one. It is A REAL CELEBRATION OF LIFE!

    The post op is actually not bad. I have been very careful following Dr's instructions and the wounds are healing great. I have a Nephrologist now and I will be seeing her next Monday to go over some things to keep my kidneys healthy. I have not had any alcohol or soda since right before the last partial nephrectomy because I feel like both my kidneys have been thru a lot and I really want to be better with my body. I am also losing weight (cos of no soda or alcohol - i was a fan of both), and that makes me feel good. Summer is almost here so there's going to be lots of walking and enjoying being outside.

    I am always grateful for this forum and the amazing people who are also survivors who understand how we feel, the fears, the worries, the small moments, AND BIG MOMENTS of happiness.

    Thanks for checking in. Hug my warrior bro!

  • Deanie0916
    Deanie0916 Member Posts: 628 Member
    #20

    Thanks for keeping us updated, I'm glad you have the surgeries behind you and the tumors gone. Enjoy this summer!

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