Calling all TNs
Comments
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This summer at my annual preventative well visit my urinalysis had blood in it, i did a 30 day repeat and it was still there. I was referred to a urologist and finally got an appt end of September. I meet this young doctor, give him my history. No clear reason why it's there, he wants to do a cystoscopy. It scheduled for this Monday November 24. I'm not looking forward to it - I get to be awake and watch this little camera go up my urethra and explore my bladder. CRAP! I am hopeful it's nothing since I had an abdominal scan in the summer and I believe it would have shown if something was going on with my bladder or kidneys. At the same time I keep thinking here we go. The doctor in a round about way said with me bring brca1+ and TN he's not "messing around". Ugh. This sucks. Any feedback or experiences?
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jen, did they culture your urine for infection? Do you drink very much water? I used to not and I always had a trace of blood in my urine and my doctor said it was common in folks who didn't drink enough water. What would BRCA 1 have to do with blood in the urine?! Vaginal bleeding can show traces of blood in a urinalysis but it seems like you would know if that was happening. My doctor told me I'd be a case study if TN went to the bladder. I'll pray for you. Keep us posted! HUGS!!!
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jenjen,
Brca1' s are prone to bladder cancer and we all know the tn story so my comment to you is...you found a doc who knows what he's talking about!
Hopefully it's lack of water or a bladder infection, but it's great that your doc knows how important to check out!
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Radical, do you mean BRACA 1 can make you more prone to bladder cancer as a primary, or mets from breast cancer? My doctor told me it's extremely rare for BC to spread to the bladder. I have off and on burning urination but tested negative for an infection so I was worried it was bladder mets and the TN scares me, but like I said the Onc said I would be a case study it if was mets. I was told to drink a lot of water. I'm not BRCA positive but still... Thanks for any info!
I'm not trying to take jenjen's post. Sorry if this is taken wrong.
Jenjen, keep us posted. Prayers for you on Monday!!
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Eileen, Sorry you are having a down day. We all have them from time to time. Hang in there. You mentioned an MO in Baltimore. Do you go to Johns Hopkins? I know 3D mammograms are good for dense breasts, but I'm still interested in hearing if anyone else here has a breast surgeon who will prescribe an MRI at least every other year for TN & dense breasts.Jenjeni, Sending good thoughts your way that all will be fine.
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Rad - I don't believe that to be a true statement (brca1 prone to bladder cancer).
I know it's not a UTI or stone or water related. There are not too many other options and I have the same feeling I had when i had my biopsy. Not sure how i'm going to make it to Monday afternoon....seems like forever from now. Now I regret not being more aggresive in the root cause and hanging my hope on the scan. Shit.
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Rad - I don't believe that to be a true statement (brca1 prone to bladder cancer).
I know it's not a UTI or stone or water related. There are not too many other options and I have the same feeling I had when i had my biopsy. Not sure how i'm going to make it to Monday afternoon....seems like forever from now. Now I regret not being more aggresive in the root cause and hanging my hope on the scan. Shit.
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I'm jumping ahead to respond before I read everything because I have had my 3rd followup Mammo and this last time was the first time that I received a letter from the radiologist saying that I needed a six month follow up due to dense tissue??? I questioned my surgeon, who insists that I do NOT need a six month follow up, only in a year and my MO, who also said he didn't think it necessary but would order it for my "peace of mind"! WTH??? And now I'm wondering why they haven't ordered an US for me?? As it seems to be that most on here, with dense tissue are getting that??0 -
Jeni, - Try to take a deep breath and not jump to conclusions! You may simply have an irritation from something! (a tiny stone, or even intercourse, can cause a urinary irritation.)
MomMom, - My first bs wanted me to have an mri every year, alternating with mammo every 6 months. Unfortunately, my insurance company denied my mri requests after 2 years. Several years later, my onc FINALLY got approval for one, and it was then that my 2nd BC was discovered. I had been going for yearly mammo/sono, but did not have 3D mammo. Perhaps that would have picked it up sooner.
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My genetic counsler told me Braca + are linked to pancreatic,ovarian,mylenoma,and breast. Nothing was mentioned about the bladder. There now is a new genetic test for breast to pancreatic. It is supposed to be approved shortly.
Mommom=Yes,Hopkins. I live 10 minutes away. Went for my pet scan today. Tech took me in the back to show me my results 100% clear. I can breath again.
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Eileen, congrats on the clear PET!!!!
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Eileen, Yes! Huge congrats for a clean PET Scan!!! Doing the happy dance for you.
That makes me feel better that you are going to Hopkins and they aren't insisting on an MRI. I do think they are more definitive, but I think the docs really have to advocate for one to be approved by insurance, ie, supporting letter.
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Nettie, I'm 67 and still, and always will, have very dense breast tissue. However, until the bc diagnosis, I never got the go ahead for an ultrasound pre-emptivelly. I would just get one from time to time if they found something on the mammo and needed to see if the mass was fluid filled or not. This first time post treatment mammo, my BS added the ultrasound. Now my radiology center is proudly touting the ABUS Ultrasound for dense breast tissue - it's supposed to pick areas out better for dense tissue. I read the brochure prior to my ultrasound on Friday and asked the tech about it. She referred to it as ultrasound "light" and said the one she was doing was much more thorough. Who knows!
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congrats on clear PET!
Jen, I take cranberry tablets also. Am on lasix for heart, but ever since I started tx I feel like I don't urinate as much as I should at all. I have a really good gut feeling on this. Will keep yiu in my prayers
I got approved today for free cleaning, once a month for 4 months! Check out cleaningforareason .....can't wait!
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Toby, yay for you for free cleaning! That's awesome!!
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Toby, that is cool about the cleaning. I am okay right now and don't need it, but I want to check out the site for a friend of mine that just started chemo. Thanks for the info!
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I saw my Onc yesterday. She has released me! I am done. Said to come back to see her anytime I felt the need or if a new concern should pop up. Reminded me to get a colonoscopy every 5 years, keep going to the gym, work at keeping stress levels at a minimum and continue with my PCP for stuff like high blood pressure, high cholesterol, diabetes and heart disease. Yep, I got all 4 of those biggies.
We talked about recurrence for a few minutes and she told me that she has only had 2 TN recur after the 5 year mark.
I know I will never totally be "done" with cancer. But I really want to put it on the back burner. Just be happy and grateful for getting this far out and appreciate all the good things in my life.
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NavyMom - may I say that is wonderful news! Well done for getting through this, all the best to you and your family for the future!
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Navymom, Wonderful news! That's the message we all want to get!
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NavyMom, Congratluations! This is such great news for all of us to hear, thank you! Hope you go celebrate ;-)
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So happy for you navymom. xo
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Hooray NavyMom!! You are where I want to be four years from now!
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Congrats Navymom!!!!
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NavyMom Happy dancing....
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navymom - fabulous news - exactly what we are all hoping to hear one day. Thanks for sharing with us. Celebrate, celebrate, celebrate!!!!
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NavyMom, Fantastic news! Congratulations! Doing the happy dance for you!
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congratulations navy mom!! I think we all want to be where you are right now. Cannot wait!!!!
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So happy for you Navymom! 5 years is indeed supposed to be the tn goal...it's all the other ladies on high alert for 10 years I suppose....
Regardless, you're alert level has gone from red to yellow to green. I can't wait for mote of us to join you!
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navymom, congratulations and I second everyone above!
so nice to hear!!!!!!!0 -
Navymom - Congrats to you! That is great news and makes me smile. Talk about a good Thanksgiving
One more year for me to get to the 5-year mark. However, I can honestly say, it's not on my mind nearly like it used to be. Time heals!Kathy
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