Not again!

Q324

Not again!

Q324

I can't believe I have to do this again!

Was dx in 2005 with DCIS rt breast. Had a lumpectomy, radiation, and tamoxifen for 5 years. Normal mambo in November 2013. Then felt a mass on the left breast in May. Tests, tests, test. Now have IDC. Mass is 2.3 cm. 

How does this happen so fast? Why am I so much more scared this time?

I know waiting for appointments is part of the process but I really want information and action now!

I think I am going to opt for double mastectomy this time. I have a strong family history of bc. My Mom,  5 of her 6 sisters, my sister, and a cousin. No BRAC 1 or 2.

Any words of wisdom? Feeling panicky 

april485

First, I am so very sorry that you have been diagnosed with a second BC. It is my biggest fear as well. As for words of wisdom, the only ones I can think of is you can do this! I think once you have your treatment plan in place, that feeling of panic will start to subside some. I think if it were me, I would get a mastectomy too with a second BC diagnosis. As for happening fast, yours was actually a long time in between in comparison to many others I have seen here on the borards.

BREATHE and know we are here for you to vent. Scream and kick stuff and then you will be ready to face whatever you have to face. We understand that the waiting is the worst! Just incredibly hard on us. HUGS and will keep you in my thoughts.

Q324

Thanks April. I am very grateful for this site and people like you who understand and will take the time to share kind words and experiences.

I know you are right and I will feel stronger once the plan of attack is in place. This "limbo" place sucks.

I have had nine good years since the last time I had to deal with this. And in that time I have married an awesome man who supports me so much. I am very blessed to have a strong support system and now some new friends in this sick but special sisterhood of bc.

I hope all has been going well in your fight!

3rdtimenow

Hi Q234, I don't know if I have any words of wisdom, but I can empathize, I have just been diagnosed for the third time, and the waiting is the worst, It took 5 weeks to finally get my surgery and biopsy results. I have so many questions without answers yet, because I have another lesion that will be taken out on the 12th of June. I am so sorry you are going through this but you are not alone. Best of luck to you.

Basia

Q324, sorry you are here and going thru this again. i know this is not comforting, but with my recurrence my oncologist was hoping that it was a new BC and not a recurrence, he feels the odds are more in your favor if its a new one.  To me it sucks either way, but the staging is different and they treat it differently.  Hang in there.  

Q324

3rdtimenow and basia

I'm so sorry. It is comforting to know I'm not alone, but gosh I hate to hear that others are suffering thru this. This site has sure shown me that there are a lot of us out there. 

Do either of you have family history?  There is so much more research to be done!

I will be thinking of you as we all - Hurry up and WAIT

Basia

you are so right, its hurry up get everything done and then wait and wait for all the results and for them to figure out how to handle it all.  

What's the saying, misery loves company? I hate that there are so many here, but it is comforting to not go thru it alone.  Family and friends can only understand so much.  Just know we are all here for you 

3rdtimenow

I did not have family history on my mom's side, but my dad's grandmother had breast cancer, I don't know if they weigh the paternal side. My dad's sister also had it but she got it after me, I was only 49 the first time and she was in her 70's, my dad had colon cancer and there might be a link. I tested negative for the Braca gene.

3rdtimenow

Basia, you are so right, I have a good support system, but I feel so alone, I have breast cancer buddies too, but going through it the third time, they don't even know what to say to me. I am thankful for you ladies.

MakeMineATriple3

5 for 5 sisters have had BC -- all a bit different and different stages, etc.  BRCA-1+ for some, me not.  

I was the last one in Dec 2011 at 58.  I have recurrence of Triple Negative now with 9 mos clean and 11 mos free of chemo. I got the double mass right off the bat and all nodes were removed--doctor had to.  I did a lot of dumb stuff due to fear.  Went from 2.2 cm to 8.5 cm  STUPID stuff.  Won't waste your time on it.

Now, I stay away from statistics and research.  Prefer to remain positive.  Check out Kris Carr and Crazy, Sexy Cancer site.  Also, check out the book Radical Remission and Dr. Weil's Spontaneous Healing, Bernie Siegel's Love, Medicine and Miracles.  Check out the book Sanctuary by Stephen Lewis.  Read positive stuff instead of studying about cancer!  Study about healing from it!  There is a big difference. Between those two things.

BELIEVE this will be the last time.  Allow yourself to HOPE.  Hope is all there is.  If you have a hope-killing onco doc, get another one fast!

Stay positive.  Don't go to fear, it won't help anyway.  Get your immune system up and keep it that way.  Get an open-minded onco doc, if you don't have one, get one.  The immune system HAS to be strong WHILE you're in chemo and after too or you might get recurrence again.  BELIEVE and use your intuition.  Don't say you don't know what is happening.  Look in !  Stay in Control.  People who BELIEVE they have no power over their illness, have no power over their illness.  Make sense?  Of course it does!  Don't panic.  If you need meds to stay calm, get some.  Don't be hard on yourself.  Eat right, pray, play, be around POSITIVE people, no drainers.  See what you can LEARN from your recurrence.  It's not the end of the world.

Blessings and prayers going your way.  

GwynnerWinner

shorfi

Q324...I can so relate. I had a clean mammogram in December 2012 and then alternated with breast MRI in June 2013. Could not believe when they told me I had breast cancer AGAIN!!! I opted to have bilateral mastectomies and had chemo.

I will PM you.

2timer

I went through pretty much the same thing.  Small low grade DCIS in 2007.  Lumpectomy, rads and 5 years of tamoxifen.  Dx last July with a stage II grade 3 cancer with lymph node involvement. 

Devastated.

But you do what you have to do.  So I did the bmx with recon and chemo.  Life is just starting to return to something that might be called normal.  But my head just cannot get around having invasive cancer.  It's so different now ... I'm not "cured" like I was 8 years ago, I'm in "remission".  It's surreal.  But I'm doing okay physically.  Emotionally, well, I'm told with time things get better.  Bless you.  I will keep you in my prayers.

Q324

You all are so wonderful and I feel so incrediably blessed to have found you!

I got great news today. My original consultation appt with the reconstruction surgeon was set for June 26 - so far away! But today I got a call that I can see her this Thursday right after I see my other surgeon! I am so happy Good days are cherished an today was one.

So here is my next question. How did you all handle telling coworkers and colleagues? I am on the Board of Directors of my Rotary club and I have told a few close friends. I am surprised how often people call on me to take care of things and I feel like I can not commit to these responsibilities with everything up in the air like it is. I also don't want people looking at me with those pitiful faces. Ugh 

Ps - makemineatriple - thanks for the good book recommendations!

shorfi

I work in a hospital setting, so I just told all my coworkers and the doctors that I work for. All were supportive, even giving me sick hours to use for my chemo treatment.

So happy to hear you will be seeing your surgeon on Thursday. Don't forget to come back and let us know what is going on. You will continue to be in my thoughts and prayers.

Curlylocks

Hi Q,

I was diagnosed with a new Primary BC in January this year, also diagnosed the first time in 2005.  I was 41, had a 4cm tumour, 3 positive nodes.  I was er/pr+, her2-, grade 3 tumour.

I had a left breast lumpectomy with clear margins the first time around...oh how I wished I had listened to my gut back then and done a double mastectomy instead...oh well....cant beat yourself up over the past but just move on.

I also have a very high risk family history but only in the past 4 years.  I had an aunt that was diagnosed in her 60's a year prior to my first bc diagnosis.  My two sisters were diagnosed in 2010 and 2013 at ages 42 and 50.  My youngest sister died of bc in 2012 at age 44.

Due to the high risk family history I decided to have what was suppose to be a prophylatic masectomy with DIEP reconstruction in Dec 2013. SURPRISE - pathology from that surgery revealed a new Primary bc in same breast (left) but this time it was Triple Negative.  I was 49 at my 2nd diagnosis. Tumour this time is IDC 1cm, grade 1, stage 1.  I did 4 rounds of cytoxan/taxtotere from February -April.  

It's shitty having to deal with this disease again.  I definitely have more fear this time, especially since it is Triple Negative.  Damn cancer!  Hang in there sweetie, it will get easier once you have a treatment plan in place.  I know how you feel and wont wish it on anyone:(

Michele

Q324

Wow Michele. Thanks for your response. 

I am amazed at the number of women with such similar stories.  I was 42 with my first dx and I'm 50 now.  My mother was 52 when she was dx and my sister was 43.  I am so sorry for the loss of your sister. I have lost 3 aunts and a cousin (age 40) to bc. Losing a loved one does seem to amplify the "scary" factor. 

I have been regretting my decision not to do the BMX the first time too! But at the time I was 2 years into an ugly drawn out divorce and had just started seeing this awesome guy (who is now my hubby).  I just wasn't in a place to go for it.  Since my mom's dx, I had always told my self that 'when" ( not "if" ) I got bc - I would just get rid of them and move on. But no matter what plans you make you are never prepared when that blow comes!

So I guess now is my chance to go with plan A.

My very best wishes for you and your sis  

Q324

Don't worry Shorfi - I'm sure I will be back tomorrow night after Dr. appts to complain or ask questions about something.

You all are not gonna get rid of me that easily! LOL

Bexter3

I am so very sorry to here you are still on the hell roller coaster. No words of wisdom, only support and prayers. You can kick this one too. 

Q324

Thanks Bexter. I read a couple of your posts on other threads. You have such a funny spirit. I look forward to chatting with you on this hell roller coaster! We are all hanging on for the ride!!

cider8

Ladies, I did get BMX the first time and still ended up with a recurrence and new primary!  No guarantees any way you look at it.  Sometimes I think if only I has not had skin sparing recon, maybe I wouldn't have gotten more cancer!  But, alas, cancer is too sneaky.  No recon is no guarantee either.  That sort of bargaining gets me nowhere.  

I'm feeling resentment regarding the physical toll treatment has taken.  My chest is so friggin tight even with excellent PT.  One thing to remember is the lumpectomy preserved some quality of life for the time in between.  The more experience I gain, the more I see a lot of this is a crapshoot.  Not to be negative or cynical, but to be realistic.  Sometimes I think treatment is just whack a mole, that cancer will show up again for some no matter what treatment.

Mine was more scrunched together, as you can see in my signature. First diagnosed age 39.  The waiting for results, for a plan does not get easier.  What has gotten better for me is navigating.  The questions to ask, considering the answers and recommendations, dealing with appointments and paperwork, talking to people about it.  My second and third bouts did not feel very new, vs you guys with years in between.  Treat this with all the newness you need.  Or old hack!  I think once you get the treatment plan in place you will have a better grasp on how you want to handle things.  In the mean time, you don't have to explain yourself if you don't want to.  

Also consider talking to a therapist experienced with BC.  It just sucks all around.  Hugs to everyone.

Betty14

Hello Q324,

                  I read your post and felt an overwhelming feeling of empathy for you....I guess it's that feeling that binds us all here together. We are all in the same bc boat as far as I'm concerned because this can happen to any of us. I just want to say that I am amazed that you went through 9 years clear...that is a testimony to your resilience. Only yesterday I found out my diagnosis was actually AIC which is a rare type of invasive bc....whereas initially I thought I had DCIS. The treatment I had is still valid for AIC...I had just misunderstood my diagnosis.....anyway enough about me I am just trying to assure you that even though you now have an invasive diagnoses you will find the same strength to deal with this just like you did with DCIS....why? Because that is what we all do eventually we all get on with things and do the best thing for us. I had a mx 3 years ago and my medical team are happy that I did what was best for me for the type of bc I was diagnosed with and you will find the right treatment for you once you start getting more in depth information on your treatment choices. I wish you all the very best.  had a huge cry and a meltdown then I got some amazing support here at BCO and I dusted myself off and thought right ....." I must keep my chin up for my own sanity"

I must mention I was 45 when I was first diagnosed now I'm 48.

I noticed your post about telling people at work ..well I think now days there are more people linked by cancer than we realise....most people have either been diagnosed themselves or know of someone close to them that has. I don't think cancer is quite the taboo it used to be. When I told my sister she told her work colleagues and there were at least a couple of women on her floor alone that had been diagnosed with bc. I was surprised back then when she told me. I thought I was alone for a long time but not anymore. I think if people look at you with pity it's because they really intend to show empathy .

momof2doxies

Q324,

So very sorry to read that you are facing this again. In my family it is only me with BC. Look at my profile; I have been diagnosed 2012 and again in 2013. They are separate tumors. I had a BMX in Oct 2013, followed by chemo. In my opinion, I feel that I needed bigger guns thrown at the first tumor. But I came through and had the energy to see my daughter married in May and now I am sitting in my vacation home in Oregon. If you have any questions PM me and I will try to help. 

Q324

Once again I am just floored by the amazing women on this discussion board.  Every time I come back here and read your encouraging notes I begin to cry. They are not tears of sadness though. They are tears of gratitude.

Thank you all . . .

Cider - for the reminder that there are no guarantees, we just have to put on our big girl pants and fight!

Betty - for pointing out that friend are not showing pity but rather love and empathy.

Doxie mom - for shinning the light on the end of the tunnel.

I am overwhelmed 

Q324

Good Morning Ladies

What a whirlwind yesterday was!

Met with my primary Dr , genetics counselor, and reconstruction surgeon. Did pre-op and blood work. Got home at 11pm.  So far it looks like a series of surgeries this summer.  Starting with lumpectomy, lymph node biopsy, bilateral subareolar biopsy and bilateral devascularization of the nipple areolar complex on Wednesday. Yikes - big words.

Then bilateral mastectomy and tissue expanders three weeks later. And finally reconstruction a month or so later. No mention of chemo at this point as long as the lymph nodes are clean.

Everyone was right. I am feeling stronger now that we have a game plan and I'm so grateful that my doc can get this out of me soon.

Feeling like a very lucky girl today!  My DH on the other hand is having a meltdown. He already has generalized anxiety disorder and this has sent him over the roof! He is going to call his doc today. Poor guy

Curlylocks

Q234,

Happy to hear that you have a plan in place.  

Can I ask why you are having a lumpectomy and then a masectomy?  Why two surgeries?  I am not familiar with some of the other procedures that you are having done, big words is right!

Our families really suffer as well with this diagnosis.  I hate that they feel that they have no control.

Much love to you my friend.

Michele

shorfi

So happy you feel better and that your ttreatment plan is in place. Don't forget to come here if you need to vent.  Some of the women here were my life line and I would like to pay it back forward. PM if you need me.  I'm here

Q324

Hi Curlylocks

The first surgery is more about the devascularizaton of the skin and nipple as well as the lymph node biopsy.  They are concerned about the viability of my left breast skin and nipple because it was radiated in my first round of bc.  If this goes well and the nipple survives then they can go ahead with the skin & nipple sparing mastectomy - if it dies then they have to take it off and do a difference procedure like a flap.  Also if the cancer has gotten to the lymph nodes it will probably mean chemo so that would change the plan too. 

They will do the lumpectomy too just to get the cancer out and prevent it from getting bigger - more for my sanity I guess.  

I was offered the option to do all of it in one surgery but after hearing all the pros & cons from my doctor and the plastic surgeon I am going with three step process. In my mind it seems logical to clear the way and make sure every thing is good to go rather than do everything at once - think I'm all done and then have a nipple fall off and have to start over.

3rdtimenow

Hi Q324, I'm so sorry you have to spend your summer in surgery, but I am glad that you have a plan in place. I am having my next surgery on Thursday and then by the following week I hope to have a plan as well, if the  2nd, is malignant  probably a series of surgeries for me, too. Good luck, Stephanie

Q324

You are so right cindy. There are no guarantees! I was nine years out and pretty much though I was done with this. And please don't apologize for "lurking". That's how we learn from each other.

Surgery went well on Wednesday. Prelim pathology showed no cancer in the lymph node. 

Praying for good things for you Stephanie! Come back and lets know how thing are going.

3rdtimenow

. My day yesterday was quite unbelievable, my first MRI in April showed 2 problems spots, I had surgery on May 22nd. on the first, which turned out to be malignant. The second was much more difficult to get to, so I was to have surgery yesterday. I went in for the needle localization, prior to surgery. It was taking so long and I was getting pretty stressed out, well after several sets of pics, a couple of additional doctors looking at these pics, they pulled me out and said "no surgery" the second spot was simply not there any more. A glitch in the first MRI or the miracle I had been praying for. I am very grateful and will see my radiologist and oncologist next week to see what's next, hoping for just local radiation.Q324 so glad your surgery went well and lymph nodes were negative, a good sign. You are right Cindy, as they say on my Alzhiemers support group ", you can only do the best you can do', Regards, Stephane