Second Timers - Please talk to me

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 

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.

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.

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.

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.

How did you go with the hot flushes etc? No issue there either? They terrify me!

Excuse me being so niave...but if you have had an ooph does that mean no tamoxofen?

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!

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. 

Excellent.  So we can expect a massive research donation then?

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.

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!

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