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SoCalGal · 05-26-2012, 10:20 PM

I'm an expert on that subject. Well, maybe not an expert but will share what I said to my man about my disease (about a year and a half ago).

I did not talk about it right away, we had gone on a handful of dates, which included physical activity like a hike, we'd gone out dancing, so he saw me as "normal and healthy" because I am.

When the time came to become more intimate, I spoke with him along these lines: "I want to share something with you...I am a 16 year survivor of breast cancer. I am 4+ years stage 4 and I view my illness as chronic - it's something I manage. I am only bringing this up because some of my body parts are re-arranged and I would not want you to be shocked. I am very comfortable with my body and self. I know it's a lot to take in right now, so as you have questions feel free to talk to me about things at any time." He asked me a couple of body part questions (guys are guys) and we continued in our relationship. As time went on, I would share more of cancer world with him, and after several months I asked him to come to treatment with me. I will say that it helps that we are both over 50. I think that a certain maturity sets in for everyone when you reach the big 5-0.

This helped me, too:
A very close friend of mine (male) said to me when I was starting to date, Look, you're going to date a lot of men in your life. Some men will be okay with your illness, some will not. It's not personal. The ones who are not okay with it are not for you. It's the same as with your kids. Some men will feel that your kids are no big deal, others will not be okay with it. THAT put things into perspective for me and allowed me to be very matter of fact in my discussion of cancer. It was something in my life - take it and me or leave it and me! It allowed me to be very matter of fact and straightforward in my approach.

I don't think you have to tell too much at first. DAting is a process. Why share your personal medical info when you are just getting to know someone. It is so nice to be a woman and not a cancer patient. And it is nice for the man to see you for you and not some cancer girl.

If someone asks what your port is, you can say it's a long story and you'll tell them at another time. If they cannot respect that, then they are not the right man for you, wouldn't you say?

Hope this helps you!

05-26-2012, 10:20 PM	#9
SoCalGal Senior Member Join Date: Apr 2007 Location: LA LA Land Posts: 1,607	Re: Dating when Stage IV I'm an expert on that subject. Well, maybe not an expert but will share what I said to my man about my disease (about a year and a half ago). I did not talk about it right away, we had gone on a handful of dates, which included physical activity like a hike, we'd gone out dancing, so he saw me as "normal and healthy" because I am. When the time came to become more intimate, I spoke with him along these lines: "I want to share something with you...I am a 16 year survivor of breast cancer. I am 4+ years stage 4 and I view my illness as chronic - it's something I manage. I am only bringing this up because some of my body parts are re-arranged and I would not want you to be shocked. I am very comfortable with my body and self. I know it's a lot to take in right now, so as you have questions feel free to talk to me about things at any time." He asked me a couple of body part questions (guys are guys) and we continued in our relationship. As time went on, I would share more of cancer world with him, and after several months I asked him to come to treatment with me. I will say that it helps that we are both over 50. I think that a certain maturity sets in for everyone when you reach the big 5-0. This helped me, too: A very close friend of mine (male) said to me when I was starting to date, Look, you're going to date a lot of men in your life. Some men will be okay with your illness, some will not. It's not personal. The ones who are not okay with it are not for you. It's the same as with your kids. Some men will feel that your kids are no big deal, others will not be okay with it. THAT put things into perspective for me and allowed me to be very matter of fact in my discussion of cancer. It was something in my life - take it and me or leave it and me! It allowed me to be very matter of fact and straightforward in my approach. I don't think you have to tell too much at first. DAting is a process. Why share your personal medical info when you are just getting to know someone. It is so nice to be a woman and not a cancer patient. And it is nice for the man to see you for you and not some cancer girl. If someone asks what your port is, you can say it's a long story and you'll tell them at another time. If they cannot respect that, then they are not the right man for you, wouldn't you say? Hope this helps you! __________________ 1996 cancer WTF?! 1.3 cm lumpectomy Er/Pr neg. Her2+ (20nodes NEGATIVE) did CMF + rads. NED. 2002 recurrence. Bilateral mastectomy w/TFL autologous recon. Then ACx2. Skin lymphatic rash. Taxotere w/Herceptin x4. Herceptin/Xeloda. Finally stops spreading. 2003 - Back to surgery, remove skin mets, and will have surgery one week later when pathology can confirm margins. ‘03 latisimus dorsi flap to remove skin mets. CLEAN MARGINS. Continue single agent Herceptin thru 4/04. NED. ‘04 '05 & 06 tiny recurrences - scar line. surgery to cut out. NED each time. 1/2006 Rads again, to scar line. NED. 3/07 Heartbreaking news - mets! lungs.sternum. Try Tykerb/Xeloda. Tykerb/Carbo/Gemzar. Switch Oncs. 12/07 Herceptin.Tykerb. Markers go stable. 2/8/08 gamma knife 13mm stupid brain met. 3/08 Herceptin/tykerb/avastin/zometa. 3/09 brain NED. Lungs STABLE. 4/09 attack sternum (10 daysPHOTONS.5 days ELECTRONS) 9/09 MARKERS normal! 3/10 PET/CT=manubrium intensely metabolically active but stable. NEDhead. Wash out 5/10 for tdm1 but 6/10 CT STABLE, PET improving. Markers normal. Brain NED. Resume just Herceptin plus ZOMETA Dec 2010 Brain NED, lungs/sternum stable. markers normal. MAR 2011 stop Herceptin/allergy! Go back on Tykerb and switch to Xgeva. May-Aug 2011 Tykerb Herceptin Xgeva. Sept 2011 Tykerb, Herceptin, Zometa, Avastin. April 2012 sketchy drug trial in NYC. 6 weeks later I’m NED! OCT 2012 PET/CT shows a bunch of freakin’ progression. Back to LA and Herceptin.avastin.zometa. 12/20/12 add in PERJETA! March 2013 – 5 YEARS POST continue HAPZ APRIL 2013 - 6 yrs stage 4. "FAILED" PETscan on 4/2/13 May 2013: rePetted - improvement in lungs, left adrenal stable, right 6th rib inactive, (must be PERJETA avastin) sternum and L1 fruckin'worsen. Drop zometa. ADD Xgeva. Doc says get rads consultant for L1 and possible biopsy of L1. I say, no thanks, doc. Lets see what xgeva brings to the table first. It's summer. June-August 2013HAPX Herceptin Avastin Perjeta xgeva. Sept - now - on chemo hold for calming tummy we hope. Markers stable for 2 months. Nov 2013 - Herceptin-Perjeta-Avastin-Xgeva (collageneous colitis, which explains tummy probs, added Entocort) December '13 BRAIN MRI ned in da head. Jan 2014: CONTINUING on HAPX… FEB 2014 PetCT clinical “impression”: 1. newbie nodule - SUV 1.5 right apical nodule, mildly hypermetabolic “suggestive” of worsening neoplastic lesion. 2. moderate worsening of the sternum – SUV 5.6 from 3.8 3. increasing sclerosis & decreasing activity of L1 met “suggests” mild healing. (SUV 9.4 v 12.1 in May ‘13) 4. scattered lung nodules, up to 5mm in size = stable, no increased activity 5. other small scattered sclerotic lesions, one in right iliac and one in thoracic vertebral body similar in appearance to L1 without PET activity and not clearly pathologic APRIL 2014 - 6 YRS POST GAMMA ZAP, 7 YRS MBC & 18 YEARS FROM ORIGINAL DX! October 2014: hold avastin, continue HPX Feb 2015 Cancer you lost. NEDHEAD 7 years post gamma zap miracle, 8 years ST4, +19 yrs original diagnosis. Continue HPX. Adding back Avastin Nov 2015 pet/ct is mixed result. L1 SUV is worse. Continue Herceptin/avastin/xgeva. Might revisit Perjeta for L1. Meantime going for rads consult for L1 December 2015 - brain stable. Continue Herceptin, Perjeta, Avastin and xgeva. Jan 2016: 5 days, 20 grays, Rads to L1 and continue on HAPX. I’m trying to "save" TDM1 for next line. Hope the rads work to quiet L1. Sciatic pain extraordinaire :(( Markers drop post rads. 2/24/16 HAP plus X - markers are down SCIATIC PAIN DEAL BREAKER. 3/23/16 Laminectomy w/coflex implant L4/5. NO MORE SCIATIC PAIN!!! Healing. APRIL 2016 - 9 YRS MBC July 2016 - continue HAP plus Xgeva. DEC 2016 - PETCT: mets to sternum, lungs, L1 still about the same in size and PET activity. Markers not bad. Not making changes if I don't need to. Herceptin/Perjeta/Avastin/Xgeva APRIL 2017 10 YEARS MBC December 2017 - Progression - gonna switch it up FEB 2018 - Kadcyla 3 cycles ---->progression :( MAY30th - bronchoscopy, w/foundation1 - her2 enriched Aug 27, 2018 - start clinical trial ZW25 JAN 2019 - ZW25 seems to be keeping me stable APRIL 2019 - ONE DOZEN YEARS LIVING METASTATIC MAY 2019 - progression back on herceptin add xeloda JUNE 2019 - "6 mos average survival" LMD & CNS new single brain met - one zap during 5 days true beam SBRT to cord met 10/30/19 - stable brain and cord. progression lungs and bones. washing out. applying for ds8201a w nivolumab. hope they take me. 12/27/19 - begin ds8401a w nivolumab. after 2nd cycle nodes melt away. after 3rd cycle chest scan shows Improvement, brain MRI shows improvement, resolved areas & nothing new. switch to plain ENHERTU. after 4th cycle, PETscan shows mostly resolved or improved results. Markers near normal. I'm stunned but grateful. 10/26/20 - June 2021 Tucatinib/xeloda/herceptin - stable ish.