Second Timers - Please talk to me
Hi - I am seeking out sisters who have had breast cancer twice in their life. I have had it in 2000 and then in 2006. I just had a scare, but everything seems to be o.k., saying it is just a cyst. I always feel like I am just waiting for the next time. I got in once, then I got it again, so I feel that the odds for me are that I will get it again. I don't like to feel this way, but it's hard not to. I have BRCA 1. I have had the total hysterectomy, the double mastectomy, reconstruction, all to help my chances of not getting cancer again, so now I feel kind of naked and vonerable(?). I want to try and get back to the old carefree me, but I don't know that I can. Is there anyone in this same position, I would love to hear from you.
Nancy
Comments
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Hi Nancy, moving on and trying to regain what we have lost is very difficult for a lot of people. You have heard the term 'new normal'? well that's what we find. Because you have been through a huge trauma, things have changed so you will naturally look at things differently and it's up to you what descisions you take to enable you to find your new normal. The old care free you can also return and the key to that is to accept, mind, body and spirit, that you have this disease and all that it brings with it. You also need to be able to say and mean that if it comes back you are willing to accept that too and deal with it if that happens. One day at a time and live it to the fullest, enjoy every small detail of your world and the world that surround each and every one of us. All you have to do is look out not in.
Peace, strength, love n hugs. chrissyb
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chrissyb - I was really touched by your reply. Thank you
You have a wonderful way with words. I had a scare, and it freaked me out. The doctor called and said my new lump is a cyst! So, I am relieved. I still will have it taken out, but no bid deal, considering what we have been through. love n hugs, Nancy
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Hi Nancy. I'm also a "2 timer" .... had it in 2004 and then again in 2009. It was easier the first time to move forward. Even though I'm BRCA2+ I really did not expect it to happen again. Since I was TN the first time, I also didn't have to deal with the se's of hormone therapy. The second dx really knocked the s**t out of me......totally shocked me. This time ES+/PR+ so dealing with se's of hormone therapy. Had BMX second time. Had ovaries removed first time. Even though I've done everything possible to prevent a new one or a recurrence ..... I don't think I'll ever feel confident again about my health. I do feel (and know) that I have lost so much now that I will never be the person I was. And I can't say my new self is better - it is not.
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hrf - I know, it was like we had it once and we beat it. But then, five or six years later, we had to hear those awful words again. I was probably in shock for a long time after hearing that news! It's sickening. I am a single mom with two teenage boys. They have been through so much, watching me, wondering whats really happening. It makes me sad for them. The second time totally knocked me for a loop. It was 2006, so I had a lumpectomy, chemo and rads. . .now its 2007, got genetic testing done and found out I have the BRCA 1 gene. December 2007, get a total hysterectomy for fear of getting ovarian cancer; June 2008, opted for a double mastectomy with TRAM reconstruction. Thirteen hours later, I woke up. So I have spent the last 4 to 5 years getting through this last wave of bullsh**. Who knows what will happen? Time will tell.
((((((HUGS)))))) Nancy
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Yes me too. First time in 2008 surgery and rads. Now here I am again. Surgery twice in the last few weeks and now bracing for chemo. I understand your pain looking at your kids. I just feel so guilty. My kids don't deserve this in their childhood. My youngest is 11 and my eldest is 17 and in his final 6 weeks of school. Desperately needs to do well as he wants to study medicine and I am just hoping this doesn't have a negative effect. All the things that were supposed to be so joyous about his final weeks just seem to have been stolen from me. hrf...can you tell me more about the se of having your ovaries removed? I am going off for genetic testing but my onc has advised me against it.
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I am in the same boat, first diagnosed TN Stage 1 Oct 2007 then in August 2010 with a recurrance ( a huge one at that and this time lymph node involvement both sides). I am in shock, I was at the point where I didnt worry about it every day and ws starting to feel normal again. Even had a clean mammo in April and a clean MRI 10 months ago. Im also not even 40 with a preschooler so I am quite discouraged. Start chemo this week and had a double masectomy and auxil node dissection 2 weeks ago. I'm just trying to take it day by day:)
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CCM - I am sorry that you are going through this again. It must be pretty tough with a preschooler. Hopefully, you are healing well from your mastectomy. I am thinking of you as you begin your chemo. Kiss and hug your sweet child all you can. Just focus on getting through this. Are you from the U.S.? Nancy (((((((((((((((HUGS))))))))))))))))
Ivorymom - Glad to hear that you are at the radiation point. You can kind of take a breather. You have a wonderful outlook about the future, I admire you. And yeah, talk about deja vu, my first dx was in May 2000, my second dx was in May 2006. Both surgeries were in June and so on. I, too, wish you peace and happiness. Nancy
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Hi just wanted to say, I had it two times two. I am not BRAC, but this time was invasive, so had chemo , no rads (had those already) and got a new reconned hoot, which frankly, at age 54, wasn't going to look good if I left the natural girl there anyway. She is much prettier than her older sister. I'm going for a prophy too. Maybe it's overkill, but WTH.
The head part is much much harder. At some point you have to decide how to go forward. I realized that 1. life itself is fatal, none of us is getting out alive. 2. I could get hit by a bus or have a stroke leaving after getting a clean mammogram. Heck, I could get anything.
I have taken every precaution (short of zometa, which i will NOT take) that I possibly can to ensure not getting it again, including an oopharectomy/hysterectomoy to lower my estrogen. I am on arimidex. I quit drinking (wellllll, cut it way down to be honest), I exercise for the bones and am considering a biophosphate for bone loss, which has been shown to prevent recurrance of bc.
that is all you can do. You've done your best, let God do the rest.
God bless
annie
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Hi Nancy,
I'm also a 2-timer. First time in 1993 in left breast, I had a lumpectomy, chemo and radiation and then Tamoxifen. (after 16 years I thought I was home free) Last year right breast, this time triple negative so I had mastectomy, chemo and because I had lymph node involvement also had radiation. Did the genetic testing and found out I am brac1+ so I had hysterectomy over the summer and I'm scheduled to have the left breast removed along with reconstruction (diep flap) on both breasts in November. In all these procedures I also ended up with lymphedema in both arms. I agree with anniealso, you've done your best, let God do the rest. I don't try to dwell on it and at any moment something else could happen. My former brother-in-law just died suddenly from a heart attack at 47 so I figure instead of wasting my time worrying about what could happen I just try to enjoy life and take it one day at a time. I do try to eat right and exercise and I'm also taking a biophosphate so hopefully I don't ever have to deal with this disease again but if someday I do I guess I will deal with it just like I did the past 2 times.
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mumorange - I know what it is like having children, no matter what age, it is difficult. I do believe that I acted really strong when speaking to them about my situation. I always say, "Mommy tough", I can beat it. That always gets a smile! I will be thinking of you during your chemo; be strong. Why is your oncologist advising you to be against genetic testing? I just don't understand. I found out that I was BRCA 1+, after going through the lumpectomies, chemos, rads. It then made me make decisions about getting the hysterectomy and dbl mx. If I didn't have the genetic testing, then I would have never had a total hysterectomy. My god, I could have gotten ovarian cancer. Now I have prevented it. I have no regrets at all. Nancy
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What is "biophosphate"? I have never heard of it. My onc has me taking 2000 mg of Vit D3. That's the only thing I am taking to hopefully prevent a recurrence of bc. Thanks
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I'm a two-timer, too. Stage 1 IDC in 2002, then another Stage 1 but ILC in 2007. I was much better prepared for the second cancer than the first. I knew more what to expect, and I knew I'd be able to get through it like I did the first time.
I don't have the BRCA gene.
I'm hoping I'm done with all this. But I don't live in fear of it every day. I refuse to.
Anne
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Nancyluvspink- You are so right. No point letting the kids know anything other than the facts and the facts are "Mum is fine and just has to sort this out..again". In some ways, second time aroudn is easier for them as they know that you can "sort it out". My surgeon has referred me for testing but the onc is questioning the benefits, saying it will make no difference to my treatment. I'm not too sure why he thinks that either. I have an appt for genetic counselling end of the month anyway. I am doing as much research as I possibly can on having ooph and mastectomy/reconstruction. I am quite interested in the skin/nipple sparing option as my issues have always been closer to under my arm both times. Ivorymom- really interested in hearing about the se of the ooph. How old were you when you had it done? I am not yet menopausal but not far off ( 46). Any info you can give me would be great.
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Ivorymom- thanks so much for sharing and I am sorry to hear you suffered some depression...I feel I am fighting that more than the BC. I have read that the SEs from Ooph are quite severe? You obviously didn't find that. Do you take hormones now? Any other SEs I should be aware of? I guess I can't understand why, if the SEs aren't that bad, why a woman with BC history wouldn't have an ooph. Did you still need to take Tamoxofen or is that deleted? Sorry to sound so vague but you are the first person I have found to ask these questions!
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How did you go with the hot flushes etc? No issue there either? They terrify me!
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I had bc twice, 2000 and 2006. My periods returned after treatment the first time. The second time in 2006, it never returned (from the chemo). I had the oophorectomy in 2007 to prevent ovarian cancer. So, I am 45 and I havent had my period since around age 43. I really wasn't aware of any significant changes after the oopho. I am post-menopausal, the hot flashes weren't that bad. Effexor is very helpful with hot flashes, being depressed, etc.
Is anyone else triple negative besides me?
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Excuse me being so niave...but if you have had an ooph does that mean no tamoxofen?
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mumorange - I'm a 2 timer. First in Sep 07, had bilater max (early stage cancer but was spread all over). Was not put on Tamox and did not have rads or chemo. Recurrence in Dec 08 near the incision site, stage 1 invasive. This time had rads to my fake boob and started on Tamox and Lupron. Took Lupron for 9 months then went ahead with the ooph. WIth taking the Lupron, I was one constant hot flash and I was an emotional hormonal mess. Stared on Effexor and made a HUGE difference in both. Some hot flashes, but felt more like myself. After my ooph in Nov 09 I did notice some new SEs. More hot flashes and quite a bit of sexual issues. No libido, dryness, atrophy - no fun!! Trying to find some products or things that will help. Hubby and I had a LONG talk about this, so we'll just have to figure it out and get through it together. I'm thinking of trying testosterone cream if my Onc says it's ok. Supposed to help with libido and shedding a few lbs.
Btw, I'm still on Tamox - not sure when I'll switch to Armidix - Doctor said there is no specific protocol, but I'm assuming he thinks the Tamox is working? Had one hot lymph node under my sternum in a pet scan and after I started on tamox it was gone....I think it could have been a non-cancerous finding but we'll never know.
I think the second time around was a little easier, at least I knew what to expect and it wasn't long after the first. I think it'll be a bigger shock if I get a 3rd years down the road. I really don't think about it. For now, today, I have NED. Just move forward, I know it can be a challenge. Best of luck to you gals! xoxo
Laura
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Interesting thread. I didn't realize there were so many of us who have had it twice. I count myself among the lucky ones; they actually found a very small second primary in my right breast which was ER+, when I was dx with TN in my left breast. Had it not been for a very good radiology Dr., I'm sure my 8mm lump would not have been found til years later. The double dx made it very easy for me to opt for BMX with immediate reconstruction. Of course, I still worry but, not every day anymore. Good luck to all of us!
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I was first dx. in 1997 and had lumpectomy/radiation for DCIS. In 2004, was dx. again on opposite side, lumpectomy and rads again with Tamoxifen. This was much more difficult to deal with than the first time. I think honestly so much is made of the "5 years" that when the beast shows up again after 5 years it comes as a shock. In 2005, I was dx for the third time and had BMX with no recon. (one year to the date from my 2nd dx). This time it was basically- the heck with it- my boobs are trying to kill me and I CAN live without them. I was going thru a divorce during #3 as well so that made it interesting. Had the ooph. and dealt with the hot flashes- living alone I could sleep in my undies which was nice!!! Since then have remarried (to my college sweetheart) and pulled my 5 years with Femara. Do I worry about being dx. a 4th time? Sometimes, but life is too dang short to waste time doing too much worrying over something that might not happen again. I try to take care of myself and do what I am supposed to. If it returns again, I'll deal with it like I've always done- give it to the Lord and then as Bomshel sings- "With style and grace, kick ass and take names".
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Rita, 3x is tough. I'm a 2 timer, first in 1990, had a single mx with chemo and recon, then last year found DCIS in other breast, so now I have double reconstruction. I was pretty angry and upset to say the least. Was so excited to make the 20 year mark, then when dx'd didn't want to tell anyone. I've come a long way in this past year, BCO along with my family has saved me!
This has been an amazing week, at the last minute I was able to join the tata's in Vegas. It was so uplifting and wonderful and yes a lot of fun to meet so many amazing women. Tomorrow I have the last step of recon - tats, yea! Thank you Nancy for starting this thread, I have been searching for other 2 (or 3) timers to chat with.
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MB3-209 | MB3-210 | MB3-214 | MB3-215 -
Excellent. So we can expect a massive research donation then?
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chrissyb, hrf, mumorange, ccm, ivorymom, anniealso, sherrie12, annew, slmdavidson, 2z54, aspen and katey - - - Hi everyone, it's me Nancy, I just want to thank all of you for responding to my topic. Being a two-timer, I didn't feel like I fit in anywhere else but here. But I needed to know that there were others like me. I have heard from women from Australia (2), Ontario, Connecticut, Colorado, Minnesota, Indiana and Pennsylvania (3) including me! We have all been through sooo much, we are a very strong group of women. I have learned so much from everyone's input. I just can't say enough about how good I feel knowing you all can relate to the different feelings we go through and the amazing strength we all have. (((HUGS)))))
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Hi Nancy sorry to hear but I am with you, I had a bi lat mast 2005 ,with full reconstruction with FDA care study implants.. Then a couple months a go I had a lymph spotted on the the opp. breast ( though it was removed also) and 300 cc of fluid all of a sudden around my one implant, I had surgery last week, the implants removed and replaced I am no longer in the study and the lymph was silicone incapsualated and the fluid sent it to be checked, got my drains out a couple days ago. I was a BIG shock to the system having to deal with all of this again.
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hi gals, I'm a two timer. 2001, DCIS, rads, tamoxifen, 5 years and the "5 year party" and then one year after finishing tamoxifen, a primary new cancer in the same boob.
My reaction was "oh for Ch***ts sake, could we not have gotten it all the first time"? As there was some discussion about it's being a new primary or a teeny piece of DCIS That they missed and that was held in check by taking tamoxifen all those years.
I went for the mtxmy, recon, chemo, since I could not do rads again, but I am going to get myself a prophy mtxmy next spring. I've had it with this stuff and I'd like to match, so rather than lift and reduce, I'm getting them both fixed up.
I had an ooph/hyst. as both of my cancer were heavily ER+, and despite tamoxifen, I kept my period and was STILL getting it at 53, no menopause in sight, in fact still fertile. Good grief. So I got both, laparoscopically, as I read up on it, and I thought the factor that was my real issue here was too much estrogen, it even sneaked thru the tamoxifen. I even kept my period all thru chemo and never slowed a bit. so after I healed up, I got the ooph/hyst. which does come with it's own issues, dryness, more UTIs, etc., but hubby and I work together to figure out what works, and so far, so good.
I am scared to wait to even get the prophy, but I have to admit, that with the ooph/hyst and arimidex, I'm actually feeling pretty safe. I think I have the time to wait, or at least I hope so.
be well all, I'm glad to be in such good company!
xoxo
annie
ho ho, I actually think I already posted on here..... arimibrain....
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Hi Ladies. Thanks for this post... My name is Kim, I'm married and I'm the proud Mom of a 3 year old son, Daniel. It was encouraging to find out there are other women out there that have dealt with this disease twice! I thought I was alone in this trial. The first time, I was diagnosed 2 weeks after my 30th birthday with Stage 2, HER2- BC in 2004 (right breast), had bilateral mas. (with reconstruction- implants), and chemo. I was fine for 6 years until this October they found a new primary cancer, 7mm tumor in my right breast again (stage 1, HER2- again). I had surgery last Tuesday and I'll have my drain removed on Wednesday. Both times my nodes have been negative. I'm waiting to meet with my oncologist next week to discuss my treatment plan. I'm assuming I'll have chemo and radiation this time around. This time has been a little easier because I know what to expect. However, I'm greatly concerned about ovarian cancer. My aunt died last year from ovarian, and she had breast cancer 6 years before. My mom passed from ovarian cancer at 42. Why have some people only done oopher. while others chose to have a full hysterectomy? Which is best to avoid ovarian cancer? I'll keep you all in my prayers. I've chosen to walk through this season of my life by faith. This trial is my servant, not my master. I've placed this afflication in God's trustworthy hands, and that gives me great peace in the midst of this storm. Be encouraged!
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I'm sorry Christ4u that you have have to go thru this again. Do I understand correctly that after a bilateral mx you had a 7mm tumor? Have you had BRCA testing yet, that would help in your decision. I can't answer your ooph vs hysterectomy question, perhaps someone else will jump in, or there must be another thread with info on site. Hope you're recovering okay from your surgery.
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ivorymom - Like you I was diagnosed with a second primary in the other boob 1 year after the first. In my case it looks like the second one was missed a year ago - we can see a similar spot on my last year's mammo but they never reported it. I had a lumpectomy last week and will have rads again. No chemo this time as the new/old one is a lower grade and not HER2+ve thank goodness. There is no way this recent one could have grown (based on it's grade and size) in the short time since I finished chemo and apparently lower grade cancers do not respond all that well to chemo anyway so it looks like it just sat there and didn't grow. Last year it was PILC HER2+ve ER+ PR+. This time IDC/DCIS HER2-ve ER+ PR+ and luckily only 6.8mm.
Sue
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my dear moms ibc also reccured just aft a month of mastectomy, she had ac thearpy n taxol than surgery radiation was due but it reccured.we r v worried fr her, she is my best friend and n the most imp pillar of our family like all moms.they r advicing us to go fr taxole again.previously she was treated at uk and now ve want to start her treatment to start in usa.just hopin fr the best result for he r n everyone here.my mom was so happy when she was told aft surgery u r cancer free she planned my bro weddin and fixed the dates but u never know what destiny is holdind fr u but i ve read so much ab stage 4 survivors that i m sure my mom will also be one of them.do remember my mom in ur prayers and i ll rem u all. luv to all
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