off topic-I may have prostate cancer |
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SagePatientAdvocates 
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 Topic: off topic-I may have prostate cancerPosted: May 23 2013 at 4:38pm |
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Dear TNBC family,
I have agonized over whether I should post this or not but as this is a place for support for all of us, I would greatly appreciate your good wishes, prayers etc. I am leaving for UCLA for a biopsy of my prostate in 30 minutes and it has been messing with my head, big-time. I should have my results next week and I will advise. Some background. I recently had a DRE (Digital Rectal exam) and the urologist at UCLA found that my prostate was asymmetrical with one lobe 2x the size of the other and he recommended I have an MRI of my prostate which is a non-invasive procedure. That was done last week and the results are "mildly suspicious" for prostate cancer. 3 out of 5 where 5 out of 5 is the worst. Interestingly it seems that prostate tissue is similar to breast tissue, from what I have been told, and just as there are many false positives with Breast MRIs there are false positives with Prostate MRIs as well. Maybe as much as 35% of the time the results are inaccurate. If I am in that group, I will be truly amazed and delighted. I have been called Steve for 69 years but I may change my name to False Positive.  The urologist felt the MRI and biopsy were advisable because both my father and his brother had prostate cancer and family history is the number one risk. Also I am BRCA1+ which confers additional risk. Yesterday, I told the last of my six children about the test and the biopsy. I almost waited to do so until I have the results of the biopsy but felt that since they are open about their health issues with me, especially my daughter who was diagnosed with TNBC in 2004 (August will be 9 years NED!!!) and is still doing surveillance and talks to me about it, I felt it was not fair to just tell her (she elicited a promise from me to tell her if I ever have health issues) so I told everyone and I am glad I did. I feel better that they know. And I have told several women, from the TNBC forum, verbally, this morning and I found their positive words very comforting, but I am running out of time and have to get to the hospital so my apologies to those who I didn't call personally. I would much rather have spoken to you on the phone but I still feel it is better to post now than to post that I have cancer. And hopefully, that will not be the case. By the way, I had a biopsy in 2007 and it was negative and at the time the MRI technology was not as advanced and they blindly took 12 core samples. It was like trying to find a needle in a haystack and another reason for me posting today is to let you know, so you can share the information with loved ones that there is something called a FUSION biopsy which I am told is state-of-the-art. I think it is available in only a handful of centers around the country. I know Yale Cancer Center has one in addition to UCLA. Those MR images then help guide the urologist to the suspicious areas and the biopsy is done more intelligently. Here is some info- My physician at UCLA is a Dr. Leonard Marks. Super guy. I asked him about what he thought about getting a second opinion on the pathology and he felt it was a good idea and is ordering one at Johns Hopkins. I think that is very important to do regarding breast cancer, as well. My former urologist at UCLA, Dr. Peter Schulam is the one who told me about the new technology. He is now Chief, Urology at Yale Cancer Center in New Haven. He is one of the leading kidney transplant surgeons in the country. I treasure our friendship. Thanks in advance for your support. with my love to all here, Steve
Edited by steve - May 23 2013 at 11:15pm |
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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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kirby
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Joined: Oct 09 2007 Location: bay area,california Status: Offline Points: 1088 |
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Posted: May 23 2013 at 5:50pm |
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Steve, my thoughts and heart go out to you. It is so tricky...divulge now...wait till I really know something. Your point has been made with your comment on telling your children and being open. A good lesson for me! No need to be stoic, you know we are all here for you. Thank you for sharing. I'll be waiting for the results with you.
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kirby
dx Feb. 2001. Age 44 Lumpectomy 2cm. no nodes stage 1 grade 3 4 rnds AC, 35 rads |
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dmwolf
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Joined: Jan 22 2009 Location: Berkeley, CA Status: Offline Points: 3619 |
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Posted: May 23 2013 at 6:55pm |
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Fingers and toes crossed.
Love you, d |
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DX 2/08@43 stg II IDC; gr2,0 nodes. Neoadj chemo, first ACx2 (fail) then CarboTaxotereX6(better). Lump, Rads done 11/08; Clodronate. False alarm queen: PetCT lung & TM marker. NED. PBM w/recon 9/10.
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Silver cloud
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Joined: Mar 06 2013 Location: Ontario Status: Offline Points: 48 |
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Posted: May 23 2013 at 7:43pm |
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Steve, I SO admire how helpful, constructive and giving of time and effort you are to so many women on this board, I just want you to know that you are in my prayers and sending as much positive thoughts as you can handle! I agree with telling your children. When my Mother went through breast cancer, she told no one. Her best friend only found out a couple of weeks before she passed. When I was diagnosed, although hard, I knew I had to include my children. This affects them as well as me and they have the right to experience the range of emotions associated with this - without being rushed. I have found that their support is immeasurable for me and that they have grown in many ways. We are closer in many ways because of this. I know your children will be there for you 110%, because the apples don't fall far from the tree! ;)
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mainsailset
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Joined: Jul 27 2008 Location: Washington State Status: Offline Points: 5004 |
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Posted: May 23 2013 at 8:00pm |
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Not that it should be necesssary, but please remember that there will be a gang of us suspended over your shoulder as you go through the testing and then the damn waiting period to hear the results. We all have become good hover'ers here over the years. I'm glad you felt comfortable about including family here, it's one thing to help another but no matter how well experienced one is in holding everyone else together, when it's your own story the news is pretzel-like to bring to the page.
It's gonna be fine Steve. Love Mainy
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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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Annie
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Joined: Dec 19 2008 Location: Canada Status: Offline Points: 887 |
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Posted: May 23 2013 at 8:17pm |
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Steve, Praying that all will be well...Take care now...Love, Annie ps very glad you included us, as Mainy said |
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Annie TNBC Stage IIA Gr 3 1cm lesion 2/5 lymph nodes+ lumpectomy,FEC & D 30Rads finished(08/2009) BRCA- Chronic Cellulitis due to Radiation-- L.Mastectomy Jan 2012
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SagePatientAdvocates
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Posted: May 23 2013 at 8:37pm |
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Well, I am in a good deal of pain...
I was anesthetized (local) and then something went wrong with the equipment and there was a fairly long delay and I guess the anesthesia wore off. Not a fun procedure. Doc saw more blood than usual. Maybe off the coumadin (I have AFIB) and even with Lovenox bridge I guess his advice is for me to take it easy for a few days is prudent. In analyzing my decision to share the news with my family and loved ones I think the thing that helped me survive and cope with my Mother"s passing when I was 20 was the fact that I was intimately involved from the very beginning, when I was 16. I was an only child and she was a single Mother after their divorce when I was six. I did not see my Father for 25 years...a story best left unsaid. My Mom was my best friend and she told me everything about her illness and that helped me be prepared for the end. Please understand I was still totally devastated and actually a part of me is till devastated but her honesty and openness helped enable me to get through the ordeal. Similarly, when my daughter was diagnosed with TNBC she told me that she had a lump that she had walked around with for four months and had not told me because she felt it would be too painful for me to know..so the first call I got was "Daddy, I have breast cancer." We discussed how devastatingly shocking that was to me and she promised to be honest from that moment on and she has and I have with her. Every family dynamic/relationship is different and of course things need to be handled in an age appropriate manner. Kirby, Denise, Silverclous, Mainy and Annie thank you. The women and men who populate this marvelous resource are truly my second family. Telling you just felt 'right' to me. I want to get one post out now regarding Harbin...Other than that I think I am going to call it a night. with my love, Steve
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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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Boo
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Joined: Feb 05 2012 Location: canada Status: Offline Points: 171 |
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Posted: May 23 2013 at 8:44pm |
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Steve, glad to be in this family so I can tell you that we care and are praying for only the best for you. You have given so much of yourself for us. I think we should hover quite nicely as a group. Love and Prayers Anne
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dx 12/2010 age 50 TNBC 12 X 9 cm tumor 1 node, 3 X FEC 9 X Doxitaxol with concurrent rads - 2X3 cm residual tumor 20/1/12 mets in lungs METMAB trial May 7 to Oct. 21, CHK1 /Gem trial 26/12/12 fails
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puakai
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Joined: Mar 23 2013 Location: Colorado Status: Offline Points: 53 |
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Posted: May 23 2013 at 9:10pm |
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Steve, I am new to this sight, having just been diagnosed in March. You are truly an amazing person! You touched me deeply with your thoughtful responses, you even gave me you cell phone number, and although I haven't called you yet, you have made a difference in my life as I KNOW you have made a difference in so many others here!
For what it's worth, I believe you made the right decision to tell your kids. I have had 4 immediate family members die and they were not always truthful to everyone about what was going on. Although it is water under the bridge, a part of all of us will be forever deeply hurt that we were not trusted with the knowledge that we felt we deserved. Does that make sense? Please know, you made the right decision. Honestly and openness is always the best route! Please know that we are here for you, in any capacity. Reaching out can be the hardest part. . . |
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Natalie
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Joined: Nov 11 2011 Location: Bay Shore NY Status: Offline Points: 473 |
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Posted: May 23 2013 at 9:31pm |
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Steve,
As others stated above, you will have all of us with you. I am so grateful for all you do for us and so many others. Although we are hear on this site, most of us having never met in person. But some how we are all very important to each other in everything that goes on for us. Thank you for sharing your news, I will be sending positive thoughts for negative results & little stress. A bit of humor here : Sooooo if it is similar to breast tissue, can you have a prostectomy to rebuild if needed?? Hey we might be breaking on new ground here hahahaha. It only takes one idea right?? Much love to you Steve, you are in our prayers. Natalie
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TNBC stage1 size 1.8, grade3 no nodes 4/11 Lumpectomy 5/11 4cycles DD A/C 4cycles DD Taxol. Double Mastectomy 12/11 BRCA all neg
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turtle
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Joined: Feb 05 2012 Location: Durham, NC Status: Offline Points: 161 |
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Posted: May 23 2013 at 9:36pm |
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Dear Steve,
Thinking about you tonite, and hoping the biopsy shows no evidence of cancer. It is absolutely appropriate for you to come to this forum and share with us...we are a loving family, and you are a treasured advocate... Hugs to you, and you know, we hold you in our hearts...
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DX IDC TNBC 1/15/12 @ 46; MRI 2.4cm gr3 BRCA2+ 6174delT; LMX 1/31/12 2.5cm, pT2pNO(i)pMX, lymphovascular invasion present; 2/20/12 TAC X 6; 7/2/12 Rad X 25; 9/27/2012 2nd mastectomy & BSO surgery
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dldlogan
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Joined: Sep 02 2012 Location: Phoenix, OR Status: Offline Points: 83 |
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Posted: May 23 2013 at 9:55pm |
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Steve,
I'm so sorry to hear of your recent health issues. I sincerely hope all goes well for you. We are all praying and sending positive ++++++++ thoughts your way.
Lots of Love and Prayers, And a big ---
 Diana
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Diagnosis 6/25/12
Biopsy 7/20/12 Mastectomy 8/15/12 IDC 1.9 cm TN Gr 3 Stage I Chemo Start 9/27/12 ACT Done 3/7/13 BRCA Neg Reoccurence-Lung 12/3/13-Biopsy 12/16/13 Brain MRI 2/20/14 Stage IV |
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debB
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Joined: Sep 14 2011 Location: Central Illinoi Status: Offline Points: 692 |
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Posted: May 23 2013 at 10:14pm |
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Dear Steve,
I am shocked reading this after getting home late from, appropriately enough, a cancer survivor dinner. Thank you for making the choice to share it with 'the rest of the family'. As we all know too well, you can never tell those close to us enough how much they mean to us. Our dear Steve, you mean the world to all of us whose lives you have touched and journeys you have helped. I hope your family realizes what an angel you are to countless women. Thank you for sharing your life, your stories, and your talents with us. We will all be anxiously awaiting the news with you and holding you close in our prayers. Take it easy the next few days and be gentle with yourself. Deb |
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Dx 4/29/11, 46 yrs old, 3.9 cm tumor, Stg 2 Grade 3 chemo 4 rounds DD AC, 12 weekly taxol, finish. Lumpectomy, 2mm residual tumor. 37 rounds rads completed. Cisplatin/PARP trial
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denise07
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Joined: Jun 26 2010 Location: pa Status: Offline Points: 997 |
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Posted: May 23 2013 at 11:58pm |
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Dear Steve,
So sorry to hear about your health issues,please don't hesitate to ask one thing from us you have been with so many here through the thick and thin of things and you are so helpful with advice you are one true blessing sent from above,yes I am so sadden to hear what you are going through but at the same time very thankful that you included us, you are always in my prayers and you always will remain in my prayers for good health and happiness we are one great connected team here so you have alot of back up!Like you said mri's have alot of false positives believe me I know and you have probably the best medical team behind you so between all of our prayers and your wonderful doctors you will get through this I promise..
Prayers sent to you...
Denise
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DX Idc 10/07,st2,gr3,2/6 lymphnodes
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TriplePositiveGirl
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Joined: Oct 07 2010 Location: Los Angeles, CA Status: Offline Points: 667 |
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Posted: May 23 2013 at 11:59pm |
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Dear Steve,
I so wish for you a clean bill of health. We all know the worry you are experiencing, as we have lived it, and continue to live it. I will be thinking of you and praying for your continued good health. I know this community loves you dearly and you have helped so many people that I believe you have earned many good karma points and that counts for a lot with the big man upstairs! Bless you, Lisas
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Diagnosed Jan 2010; Stage IIa, grade 2, 3.2cm in rt. breast, no nodes and BRCA-. 4 cycles Carbo/Gemzar 3/10; Lump 6/10; 2 cycles carbo/gem after surgery 8/10; 35 Rads finished 12/1/10. NED.
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Grateful for today
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Joined: Sep 21 2011 Location: U.S.A. Status: Offline Points: 1835 |
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Posted: May 24 2013 at 12:06am |
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Steve,
Thank you for sharing. Be assured of many good and positive thoughts and prayers. Hoping the stressful waiting time for results is less than expected. Repeating Deb's above......Take it easy the next few days and be gentle with yourself. Grateful for today...........Judy |
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Lee21
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Joined: Dec 22 2011 Location: Michigan Status: Offline Points: 752 |
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Posted: May 24 2013 at 12:28am |
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Dear Steve
Just got on the site and saw your posting. My fervent wish for everything to turn out OK for you. Biopsies are no fun at all - the discomfort and then the wait. Looking forward to good news. All the best, Lee |
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12/9/11 @59,IDC,grade3, TNBC,3cm(MRI),SLNB0,stage IIA, BRCA1 variant
1/30/12 DD AC-T, 6/7/12 Lumpectomy, ypT1b(0.8 cm), 7/9/12 Rads x 30 11/9/12, clinical trial cisplatin/rucaparib, cisplatin-only arm |
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harbin
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Joined: May 25 2008 Location: United States Status: Offline Points: 180 |
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Posted: May 24 2013 at 12:37am |
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Dear Steve, I have been constantly thinking of you today while I was in the operating waiting room and hoped your procedure went smoothly. Sorry to know that you are under pain and I know the waiting time for the result is the worst. You have done so much for us and it’s time to take care of yourself. Best wishes to you and pray for the good results. |
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4/08 dx IDC,stg2,neg. nodes,4xAC,8xTexol& Avastin,BRCA-
3/10 Recurr Chestwall,surgery 6/10 Lung mets 10/10 Parp 05/11 Surgery on 2 lung nodules 08/11 Parp failed 10/11 Cyberknife 1 lung nodule |
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TNinTN
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Joined: Apr 25 2011 Location: Knoxville, TN Status: Offline Points: 311 |
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Posted: May 24 2013 at 6:52am |
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Dear Steve,
Please know that Susan and I will be praying for you and are grateful that you have allowed us the opportunity to return the love and support you have given us.
Martin
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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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Genie
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Joined: Apr 30 2008 Location: San Antonio Status: Offline Points: 390 |
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Posted: May 24 2013 at 8:51am |
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Dear Steve,
Praying for negative results! Hugs, Genie |
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DX 3/10/08 at age 67, IDC. Stage 1, Grade 3, 1.5 cm.
KI-67 99% at MX . Bilateral mastectomy 4/1/08 Node-, BRCA 1/2-,BARD1+, TX:Cytoxan/Taxotere x4,3 in family with TNBC |
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