Any BRCA2 cancer recurrences out there...

I am BRCA 2+ but I didn't have a recurrence, I had a new primary, 369 days after my first diagnosis and 7 1/2 months after ending dose dense AC and Taxol. I had a mastectomy after my first diagnosis and because it was a triple negative tumor I was given the maximum chemo available. I was node negative so I didn't need radiation. I also chose to have another mastectomy after my second diagnosis. Once I found out I am BRCA 2+ I had a hysterectomy w/bilateral Salpingo oophorectomy, to, hopefully, avoid ovarian cancer.

There's a web site that deals with BRCA 1 & 2, called FORCE at www.facingourrisk.org

Linda

I'm BRCA2. I had primary cancer in 1996 (mastectomy followed by chemo). Several years later, after BRCA2 diagnosis, I had the second breast removed and a hysterectomy, as prophylactic measures. Sadly in Nov 2007, despite these measures, it was discovered that the cancer had spread to the liver, pleura and bones. At this stage it is considered terminal, with all treatment being an attempt to control the spread as far as possible, for as long as possible, and I will need one form or another of chemo for the rest of my life.

From my experience I can tell you that the close monitoring doesn't always work. Despite frequent visits/physical check ups with docs, mammograms and mri... my second bc was missed early on. By the time it was discovered, it had already spread to 4 lymph nodes. Don't put all your faith into the monitoring.  

Kathy, I'm on  PARP inhibitor trial at present, and due to start cyce 6 next week! So far we have had very sllight reduction in the mets to the pleura, and stability elsewhere, so it looks like a promising one. As you can see I live in the U.K, and the trial is at phase 2 for BRCA1, BRCA2 and ovarian cancers. I'm only the 3rd person on the trial, so it's hard to know what to expect-no information to be had here either. We're hoping to get a few months more out of it, and possibily may combine it with a chemo in the future. Before this I had taxotere and herceptin, which worked well-but when we moved on to herceptin on it's own, the tumours quickly regrew. Xeloda nd tykerb achieved nothing whatsoever, which was a huge blow.

It often worries me when I read here that people believe that having prophylactic surgery-or indeed even having a mastectomy for a diagnosed primary-means that the cancer will not recurr again. If only life was so simple! 

Exactly Helen-but so many people really don't seem to grasp that. Not sure if they're not given the correct information, or if they don't fully understand what they are being told. I quite often point this out-and then feel guilty as I feel that I'm causing even more stress and worry. But wrong/mistaken information is as bad as no information at all.

Hi Ladies: When I found out about the BRCA2, my med onc did explain things pretty well. I began worrying about getting a new cancer and he reminded me that we need to focus on the cancer I had, not the one I may never have.  That was a bit of a jolt as he was referring to spread/mets from this one --  I was so in the mode that I beat this one and the recurrence risk was low.   My breast surgeon reinforced that for this cancer, my lumpectomy SNB and rads are as good as mastectomy in terms of long term survival....that is reassuring.    

I sure see why some opt to minimize the risk of a new cancer with PBM.  Tend to think I will do that if there is any question on my mammo/MRI...but I have to fully recover from the year of treatment I have had...I'm getting there.     Have to say I am apprehensive about imaging next week.   

DianeKS:  So sorry you are going through this.   Do your doctor's think this is a recurrence from your initial bc or a new cancer?  How did you discover it?

((((((((Hugs)))))))))

kt57,

I didn't have chemo after my second diagnosis since it was DCIS. My Onc and I decided I didn't need it. Time will tell. I was 47 the first time I was diagnosed and 48 the second time. How do I cope? My options are...hide under the covers and cry or get out of bed each day, be thankful I am alive, love my family and friends and help to find the cause and cure. I've participated in several studies, Two Sister Study, one through Kaiser and one through Stanford on the emotional and cognitive effects of chemo on the brain. I'll volunteer my blood and saliva and answer a million questions if it will help even one person to live a longer life. I've walked miles for Komen, ACS and several smaller walks.

This isn't "my" disease and it doesn't effect only me. I have 4 children and 3 grand-daughters, so far, and I will do everything I can to help them get the correct information they need to make informed decisions about their health.

Yep, I am terrified of a new primary or recurrence, but I can't let the fear envelop me and take away my joys in life. I only have today to live in, so I choose to focus on today. Tomorrow will happen when it's supposed to and I will deal with whatever comes up, when/if it does.

And....I'm off my soap box!

Linda

Good question kt57.  I found it due to the fact that a shirt was snug around the shoulder and was uncomfortable, only on the left side.  I had a check up two weeks prior with oncologist who did not feel the node.  Saw my GP and he told me to have it looked at as it indeed was a swollen lymph node. Since then things have moved quickly.  But it was not found on routine f/u.  I had a neg SNB with first surgery so they think it was just a node deep in the area that they could not detect and the surgeon said nothing was enlarged enough to be concerned on examinatin with the first surgery which is routine with SNB.  The other thing is my PR has changed from +ve to neg, still awaiting HER2 aparently not uncommon with recurrence but with a false neg I'm not sure if that fits.  Will be getting more info tomorrow via phone so maybe some more pieces will fall into place.

Thanks for the hug.  Really incredible how great this site is when, even if you feel like the only one going through something there is a great deal of support coming my way.

Diane

cmb35: congrats on closing in on the 5 year mark.  Your chance of distant recurrance declines with time.  best wishes for your planned surgery...I hope that gives you peace of mind - you will have decreased your risk as much as you can.   I imagine I will go that route at some point,

Linda:  you stay on that soap box girl!  Your positive, live for today attitude is just what your cells need to stay healthy!   Interesting that your hormone receptors were different each time...wonder is that is typical.   Are you on aroatase inhibitors?

DianeKS:  what is your treatment plan?  hope you are doing ok.

AnacortesGirl: I think what they are saying is mastectomy vs lumpectomy/SNB/rads yield the same outcome in term of survival.   Prophylactic mastectommy gives you a 90% reduction in risk of developing a new primary, but has no effect on whether the cancer you have already had is going to spread.  So, yes, your plan to treat this cancer aggressively is the best option to reduce the risk of distant recurrence.

  Hello Kathy,

   My treatment plan is six cycles of Docetaxel followed by radiation (which I already knew about).  The decision to go with the chemo first was based on the fact that I was on an AI when I had the recurrence.  Still waiting for the Her2 results, but should be back in the next week.

  First treatment started on Monday.  So far, tolerating well with slight nausea, facial flushing which are both tolerable.  Getting the PICC line forced me to realize that the chemo was really going to happen.  Not that I didn't know it was a high probability, but another thing going back to the treatment room etc. Had my first big cry last Thursday.  Not happy with having to go through this again, but trying to take it one step at a time. 

Kathy:  you wrote that you were getting images done in Sept.  Did you get the results yet? I find waiting for information to be very stressful.

 Thanks for asking about me.

Diane.

DianeKS:   I can't imagine having to do chemo twice, esp when you did everything possible the first time around.   I am not familiar with CEF, but I did doxetaxol (with cytoxin) - 6 rounds, one every three weeks.  My biggest SEs were low white count (needed neupogen) and  neuropathy -- both of which have resolved.  Last round was in April.  Every cycle was different.   I was able to work through it - took two days off each cycle.   Radiation went fine.  I had to drive 140 milies round trip - went in the late aft so I could work most of the day -- no skin issues - did have some fatique that lingered for months.  Finished in June and feel really good now.  The tissue that was radiated is changing -- tightening some and compressing some nerves.  I am massaging it, stretching and started a more vigorous exercise routine with free weights and an arm bicycle -- that is really helping.  Diane, You can do this!!  Get rid of it once and for all!

My mammo and MRI were clear.  What a relief!!  Although I do have a lingering trepedation of doing this surveillance every 6 months.  Have to stay hopeful.   I go back for mammo and clinical breast exam by my breast surgeon in March.

Linda:  What's on the list of "danger signs"?    I am doing my darndest to stay heatlthy -- eating right --  feel like a rabbit sometimes, with all the veggies...LOL!  Broccoli is my new best friend -- well, maybe not, but I'm still eating it.  Am trying to reduce stress as much as possible... one gd thing about bc..you sure prioritize what matters...and more importantly, waht doesn't.

Stay well.

Hey girls,i have rescently been told my cancer is back,its has appeared in my clavical area,when i last had scans there was no spread to organs,but as we all know that doesnt stop us worrying it might spread,i have been given very very bad prognosis,an have four kids all under 10, reading your stories has helped me somewhat.

Anyone who has lived with simalar situation to myself,id love to hear from as i really need  little hope right now,if anyone can helpid so appreciate it.

All my best wishes.

Vinny