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    Posted: Aug 18 2012 at 9:18am
Dear all,

I am hoping that those who don't want to read about my kidney stone don't open this thread. My journey with this stone (actually stones) is infinitely, infinitely less important than TNBC but, preliminarily, because I am having surgery Monday I wanted to let you know that I may be off the board, or much less active for the next month and I wanted to give you a heads-up, instead of just being silent, with some folks wondering what happened to me.

I feel comfortable sharing my experiences regarding the stone/s because I am so comfortable with my TNBC family, and as this is a place to share, about whatever, here goes-

I urinated a large amount of brown blood about a month ago. Based on some pain and past experience (I passed a stone five years ago and I have other ones that we have been monitoring) I went to a urologist to get his opinion. The problem is that my urologist moved to the east coast...the guy replacing him also left the hospital so I went to a urologist I had never seen. 

As background, because of my BRCA1+ mutation I try my best to avoid X-ray exposure because, I have been told, that the ionizing rays damage DNA repair and my DNA repair function is already compromised due to the BRCA mutation. So when I called to get an appt. with this urologist it was requested that I get a abdominal/pelvic X-ray first. I told the appointments person that I wanted an u/s instead of an X-ray
and was told that "the doctor doesn't order ultrasounds for stones" and I was given no choice to have an u/s. So reluctantly I had the X-ray and I went to the urologist with my X-ray and he informed me "you have no stones." I told him that I have had stones for five years and that on a u/s that I had at his hospital (with my original doc) I had a couple of stones and why doesn't he look at my chart. He does and says "oh, you have uric stones...they don't show up well on X-rays...you need an u/s." I told him about my experience with his appointments person and he just gave me a "so, what?" shrug. Anyhow, next day I had the u/s and they found a 2.7 CM stone that basically is taking up the lower lobe of my right kidney and also found a 6 MM stone in one of my ureters. 

Doc tells me I need surgery and that "I do all the small stone surgery since your doc left." "well this is a very large stone so what should I do?" "well we have a new "stone guy" coming in  October...you can wait till then." If any of you have ever had a kidney stone, I think you would agree that that is not a viable plan.

In any event I go see another urologist at another hospital and he recommends I get a CT scan w/o contrast of KUB (Kidneys, Ureters, Bladder). He understands my concern about getting such a scan but convinces me that it has to be done. So I do it and my large stone and other two stones are reconfirmed.

I shall not go into details regarding the opinions of different procedures I have received. All I can say is that as agonizing as it has been to get those different opinions and assimilate all the information I am glad that I have made a decision and glad I consulted different urologists.

I am always suggesting that women with TNBC try to get second opinions, if possible, on their pathology reports and treatment plans. I know this, at times, creates stress and decisions become quite difficult. That is exactly what I experienced in my journey. I realize that there is no clear-cut perfect path for me and I have chosen a plan that has risks and may have to be re-done, within the next 2-3 weeks, because of the size/composition of the stone. I have also been told that there is a good chance that the stent that will be put in for maybe a month to six weeks may make me very uncomfortable.

I also realize that for many reasons some folks are unable to get a second opinion, nor do they want one, even if it is feasible. 

In any event, thanks for letting me share. For those of you who I am helping, as an advocate, please rest assured that I will continue to try my best to be responsive to your needs. Please call me, email me or for anyone who is new to the board please send me a PM. 

I know this may be a strange thread to some but as I love this place with all my heart and have experienced much love, in return. I wanted to share what is going on in my life.

I wish you all as good a rest of the summer as possible. I have been following my advice of trying to find the beauty in each day. That generally involves watching my grandson through pictures and u-tube videos that my daughter takes, almost daily. He will be a year next Sunday and is just starting to walk. He continues to make my heart sing. I miss him more than words can say. When he looks at me, the way he does, I simply melt. He especially likes it when I read to him and kiss his adored stuffed animal, a small black and white puppy.


with my love to all of you,

Steve




Edited by steve - Aug 18 2012 at 10:28pm
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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123Donna View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Aug 18 2012 at 12:03pm
Steve,

Thanks for sharing with us.  We love you and all the support and help you give to us.  I totally agree with you about getting second or multiple opinions.  Sometimes it gives us different advice and makes it harder to make a decision, but ultimately and hopefully a better decision.

My father suffered from painful kidney stones and watching him go through it when I was a teenager was quite frightening to see this strong man being humbled by kidney stones.  You will be in my prayers for successful surgery and quick recovery and healing.

Love to you,
Donna
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Post Options Post Options   Thanks (0) Thanks(0)   Quote sue Quote  Post ReplyReply Direct Link To This Post Posted: Aug 18 2012 at 1:54pm
Steve, 

Thank you for sharing with all of us here.  I will be thinking of you and hoping all goes well, and that the kidney stone issue will soon be a thing of the past.  

Thanks for sharing such sweet and endearing grandfather memories too!

Love and Peace, 
Sue 
Dx 7/10, age 53. TNBC left breast, stage I, grade 3, IDC 0.5 cm, DCI 2.5 cm, 0/8 lymph nodes neg. BRCA-. T/C x4 finished 2/09/11, rads x34 finished 4/21/11.          
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lillie Quote  Post ReplyReply Direct Link To This Post Posted: Aug 18 2012 at 3:11pm
Dear Steve,
I am so glad that you know "You Are Among Friends Here."  Thank you for sharing about your 'stone' situation.  I am sorry you are having to go through this. 
 
I've never had a stone.  But, I saw a friend of mine in such pain that she was crawling on the floor in her hospital room.   We told her later how 'un-lady like' she looked; she was wearing an open down the back hospital gown and threatening the doctor.  It was a sight.
 
Anyhow, it gave me an appreciation of what people can and do go through when they have stones.
 
Sweet Steve, May everything turn out well for you...
 
God Bless,
Lillie
 
 
Dx 6/06 age 65,IDC-TNBC
Stage IIb,Gr3,2cm,BRCA-
6/06 L/Mast/w/SNB,1of3 Nodes+
6/06 Axl. 9 nodes-
8/8 thru 11/15 Chemo (Clin-Trial) DD A/Cx4 -- DD taxol+gemzar x4
No Rads.
No RECON - 11/2015-9 yrs NED
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Post Options Post Options   Thanks (0) Thanks(0)   Quote krisa Quote  Post ReplyReply Direct Link To This Post Posted: Aug 18 2012 at 4:52pm
Steve,
My husband has had the lithotriptor twice. In his case, no surgery required. A friend did have surgery to remove kidney stones and still sings the praises of her surgeon-- no more kidney stone pain.
I am glad you have a plan.
Take care!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote TNinTN Quote  Post ReplyReply Direct Link To This Post Posted: Aug 18 2012 at 9:40pm
Dear Steve,
 
You have been, and will remain, in my prayers. Thank you for all that you do for us.
 
Martin 
Wife age 53@dx TN IDC Stage IIA 7/10; BRCA1&2 Neg; BROCA Neg; LN Neg; taxol+cisplatin+/-RAD001x12(clinical trial); lumpectomy 12/10;ACx4; 33 Rads complete 4/11; NED 5/5/11
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Post Options Post Options   Thanks (0) Thanks(0)   Quote BevC Quote  Post ReplyReply Direct Link To This Post Posted: Aug 18 2012 at 11:57pm
Steve, good luck with your surgery!  I'll be sending good thoughts and prayers your way.
Bev
Dx 12/2011, age 48, stage 2a, 2.5 cm, grade 3, 2 nodes +, BRAC1+ A/C x4, taxotere x2 (bad reaction) abraxane x2, bmx 4/30/12, 33 rads 6/13-7/30. Hysterectomy/Recon. 10/2012.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote denise07 Quote  Post ReplyReply Direct Link To This Post Posted: Aug 19 2012 at 1:33am
Steve,
Thank You for sharing this with us. I am so sorry you are dealing with all of this. I have two very close friends who suffered with stones it is an awful time which I am sure you know, they both had surgery and are doing wonderful nowthey both went through many scans and tests to find out what the problem was but soon after it was resolved after countless tests and doc visits. I pray that you get through this in no time at all, which I know you will you are one very strong individual you watch over each and every one of us now it is our time to take watch over you, once this is over and done with you will feel better then ever I know you will! I will be praying for you during this difficult time and pray that you have a super speedy recovery, Ethan will have it no other way. Please take it one day at a time and get a lot of rest. I am looking forward to hearing from you when you are all well.
God Bless,
Denise
DX Idc 10/07,st2,gr3,2/6 lymphnodes
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Post Options Post Options   Thanks (0) Thanks(0)   Quote trip2 Quote  Post ReplyReply Direct Link To This Post Posted: Aug 19 2012 at 3:41pm
Oh my goodness but you've been thru a hard and difficult time!  I certainly wish you
did not have to deal with this health issue and all of the stress but soon, hopefully very soon, you will be pain
free and this will be history!!  You know, everytime I look out at my Palm Tree I will be telling the fronds to send extra strength your way for a speedy recovery.Heart


Edited by trip2 - Aug 19 2012 at 3:42pm
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Aug 19 2012 at 3:53pm
Dear all,

thank you for your warm wishes...They are VERY much appreciated...

Pam, a special thanks to you regarding letting people know that rural OK is actually a destination, especially in the dead of winter, because the palm trees are so comforting, as are the mint juleps. Smile

with my love to all of you,

Steve
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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Post Options Post Options   Thanks (0) Thanks(0)   Quote trip2 Quote  Post ReplyReply Direct Link To This Post Posted: Aug 19 2012 at 4:23pm
Yep rural OK is really a destination, or atleast a location...for what well I'm still working on that one but I am lucky in that I found the one and only Palm Tree so there ya go!
Because you remind us to find the beauty in each day and that a sense of humor is significant
I have changed my "location" under my avatar to "under Palm Tree" just because....Smile
Stage 2 2003
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Post Options Post Options   Thanks (0) Thanks(0)   Quote DianeEE Quote  Post ReplyReply Direct Link To This Post Posted: Aug 19 2012 at 5:29pm
Thank you for sharing, Steve.  When you mentioned your kidney stones on the phone the other day, I wanted to ask about your condition.  But, since you are always SO respectful of our privacy, I wanted to extend the same courtesy and thought that you would share when you were ready.  I am sorry that you've had to deal with some of the same issues that we have--shuffling around to different doctors for different opinions.  Please know that you are in my thoughts and prayers for a speedy recovery and a relief from your pain and discomfort.  

I can't say enough about how much I appreciate what help & support you've given me and our entire community.  

Wishing you all the best--
Hugs, 
Diane
DX 11/2010 age 43,BRCA2+,6 rounds TAC,bx mast/ovary removal 5/2011,TNBC tumor 5.1 cm,02/14 nodes positive,37 rads,Cisplatin&PARP trial.Recurrence 2/2012,TN IBC,Abraxane didn't work, Ixempra & Xeloda
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Aug 20 2012 at 12:51am
Dear TNBC Family,

well, this doesn't get more raw than what I am going to write but I feel totally comfortable here.

Really tough day thinking about the surgery...what if this, what if that? Finally thought my head would pop off so I wrote some stuff down for my wife to make sure if something happened that she knew who to call etc. She said "I knew you were going to do this...you have been so serious all day...please stop worrying about me..." and then the dam broke and we hugged a beautiful, beautiful hug as she wept on my chest. She is a foot shorter than me. Yet, she is a giant to me and our children.

I cannot properly express the love I have had for this woman for the last 32 years. G-d has blessed me and our children..and I wrote a poem to our grandson and sent it to our daughter.

I wish my head was not screwed on the way it is or perhaps screwed up the way it is. Smile My surgery is minor in the scheme of things and I think back to my daughter as I looked at her right before they took her in for her BMX. She had an elegance about her, despite what was going on inside her. 

So my head will be held high tomorrow and I am counting my blessings. My family and my TNBC family.
Thank you all for the many calls, emails and text messages I have received today in addition to the lovely words on this thread.

I guess, at the end of the day, the two most important things are your health and being loved. In some cases I marvel at women who are going through some tough, tough days without a partner and yet they love themselves and still give of themselves to others and that love helps carry them through. There is an inner strength, an intelligence, and a positive feeling about who they are and a comfortable feeling with their essence. Getting to see people in times of adversity and seeing how, often, they rise above the circumstances is one of the best things to me about being an advocate. And seeing the love in families, when it is there, at times, just makes me weep. It is so very, very beautiful. So powerful. So pristine.

Thank you all again for making a home away from home for me and so many others. This is really a lovely place. A place of respect, of kindness, of gentleness, a willingness to share knowledge and especially of caring and love. What we have is very special. That's strive to keep it that way. 

with my love,

Steve




Edited by steve - Aug 20 2012 at 12:54am
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Grateful for today Quote  Post ReplyReply Direct Link To This Post Posted: Aug 20 2012 at 12:57am
Steve,

Sending lots of caring, healing and good wishes to you.
Would guess Ethan's pictures and You Tube Videos would help any one feel better..........
especially the grandfather.

With caring thoughts,
Grateful for today..........Judy
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Aug 20 2012 at 1:01am
Oh Steve, you have such an eloquent way with words that speak straight from your heart.  Your post brought tears to my eyes.  I will send a special prayer your way for a successful surgery tomorrow.

Love,
Donna
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Post Options Post Options   Thanks (0) Thanks(0)   Quote Miriam Quote  Post ReplyReply Direct Link To This Post Posted: Aug 20 2012 at 10:02am
Steve,
Everyone here at TNBCF is thinking of you as you face surgery today. We hope the surgery goes very well and you heal quickly & completely very soon.
As a new member of the staff, it is so beautiful to read the devotion the members of the forum feel for you, and how they appreciate all you've done for them.
Thanks for being such a very important part of this forum,
Miriam
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Post Options Post Options   Thanks (0) Thanks(0)   Quote youngmommy Quote  Post ReplyReply Direct Link To This Post Posted: Aug 20 2012 at 10:47am
Hello Steve,

We will be praying for a very fast and healthy recovery from the surgery. It almost feels so strange to write such words for a person who has been the source of strength and tireless caring attitude for so many of us and many more and that such a person should endure this hardship. But I am sure it would be very quick and easy for you given that you have been through and see, on a daily basis, such hardships in many lives. 

It would be over before it would start. Our prayers are and shall always be with you. 


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Post Options Post Options   Thanks (0) Thanks(0)   Quote mainsailset Quote  Post ReplyReply Direct Link To This Post Posted: Aug 20 2012 at 11:04am
All is right with your world, love is in play, the fixers got a good night's sleep and soon you will be waking up to just the right amount of after surgery growliness to get you up and going again. I looked around to see if I could find a surrogate for you to take your surgery, everybody seemed to be booked to go see a palm tree in OK....
 
You'll do fine.
Mainy
 
dx 7/08 TN 14x6.5x5.5 cm tumor

3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Grateful for today Quote  Post ReplyReply Direct Link To This Post Posted: Aug 20 2012 at 9:27pm
Steve,

Just wanted to leave a message for you for after your surgery.

Hope your recovery is speedy and hope you feel better every day.


With caring and healing thoughts,
Grateful for today..........Judy
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Aug 21 2012 at 12:19am
Dear all,

I am home...bunch of pain but I am here...Smile

Just got a call from the resident-

surgery took longer than expected, according to what the surgeon told me, because of an access problem they ran into in that my ureter was "tight." 

so it was about 3 hours instead of 1.5-2 as originally indicated. They only got 60% of the stone so they will go in at least one more time. Dead

Should be easier time and the next procedure is scheduled for next Thursday, August 30th. They are hopeful they will get the rest of the stone next time. Very relieved Stage I is done.
 
My grand-daughter age 12, is my dear, dear soulmate and she wrote me an incredibly beautiful poem today. That was the beauty in today, as well as the beautiful wishes from both my famiiy and my TNBC family and many friends. All of these wishes gave me the strength to post. Thank you. To be honest many, many words I just wrote were totally screwed up...not like psot instead of post but pult or pmyr..mind is a strange instrument...but I wanted to get this out tonight as I know some of you guys have been concerned..

Your support meant/means so very, very much to me. I actually felt surrounded by you guys in pre-op. My wife came in to wish me luck, in pre-op and I talked to the nurses about her and how lucky I am and than I was quiet for a moment. They wheeled me into the OR and wouldn't you know it you guys came there, too. Smile and I had a nice chat with the head nurse and broke into a huge smile.  "What are you thinking about, sir, if I may ask?" I told her "I am surrounded by some marvelous men and women, most of whom I have never in person, rather from a message board on a  marvelous website Triple Negative Breast Cancer Foundation. She smiled back at me and told me that "you are blessed" and indeed, I am. Thank you to the folks who created and and continue to nurture this organization (and who unifomly take zero salary). Thanks to Lori, who is working hard on our behalf as TNBC's Executive Director and thanks to everyone else involved from our outstanding Medical Advisory Board to Miriam, our new office manager (please write to her regarding spam problems and other administrative issues...she kindly posted on this thread above..Thank you, Miriam).

going to try to crash...but I am pleasantly surprised that I was able to get my thoughts out to you as well as my children and granddaughter.

love and cyber hugs to all,

Steve

p.s. one of the fringe benefits of being a patient advocate has been the marvelous medical professionals I have met. One is a pain management specialist at a NCI Cancer Center and she has been one of my advisors on palliative care, which includes pain management. We have become friends and she just gave me very good guidance re: pain meds. and their interaction, or not, with other meds I have to take. She also confirmed that the small one-time does of Zofran was a good supplement. My nausea has only been mild.


Edited by steve - Aug 22 2012 at 11:34pm
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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