Got Cancer? AGAIN????

kt57

Thanks Helen.  I find out my surveillance plan next month.  Am thinking it will include alternating MRI/mammo every 6 months.  My breast surgeon will do exams every 6 months.   Not sure how long I will be able to manage this emotionally.  Have you been involved with that FORCE group for BRCA positive cancers?

hrf

Hi Kathy, in my case I'm glad I was seeing docs every 3 months instead of every 6 months because my bc would have gone undetected for another 3 months since it didn't show on the mammogram at all (ILC) and was only found by the lump under my arm which I never felt. So the surveillance doesn't always work well. I have been on the FORCE website for a few years. It was recommended by my med onc. and I got a lot of good information there. This site is better in terms of dealing with chemo and rads but the FORCE site is better for surgery info. Good luck with your decisions.  Helen

jcwell

I too am having more trouble dealing with this the second time. I find I am much more matter-of-fact and calm about it all, but also more profoundly depressed. My first Dx was at age 32 in 1996. It was Stage 1, Grade 3, invasive ductal, no lymph node dissection, ER/PR- (no HER2 tests back then). I had a lumpectomy (under local - as the surgeon took it out he remarked that he was almost positive it was not cancer but a benign lump. ha.) followed by CMF then radiation. My mother tested negative for BRAC1 and 2 (she was tested rather than me b/c before HIPAA I was counseled about insurance and results).

At the end of May I felt a bump on my scar. A couple of weeks later it was already noticeably larger. I asked my gyn to feel it during my annual exam in early June, then had a mammo where it did not show, then a core biopsy. I had a bilateral masectomy with sentinel node (0/2) mid-July just 3 weeks after initial Dx. I have expanders in now, with DIEP scheduled for mid-December at Johns Hopkins (an institution which may have good surgeons, but my experience with the Avon Center was like New Orleans' with FEMA.)

Although the margin was very close, re-radiation is risky and is less of a concern than metastases, as this one was triple negative, CK5/6 positive, thus a basal phenotype cancer. I am trying to get in for BRAC testing myself - it takes forever even when it can influence treatment, and certainly prognosis. Very little is known about effective chemo for triple negatives, so little that I think I have now read all there is on it. All that comes up is, again and again, "poor prognosis."

 And yet - here I am 13 years after the first one. By the way, it turns out Pennsylvania pathology depts throw out all tissue samples and slides after 10 years, so there is no way to tell if this is a recurrence or a new primary with identical characteristics in an identical spot.

I begin dose intense taxotere/carboplatinum tomorrow. 

Jennifer

Gin52

I agree Jennifer.  The big question is not why is it back, but is it on the move?  Any 2nd timer will probably agree, its not important to us if it is a recurrance or new primary, but it is in the nodes, and if it is.....where else might it be?  My thoughts and prayers are with all of us.....whichever time we are facing the beast!

Anonymous

Hi Gina, it's me Brenda.  I stayed away for a long time because I thought it was never coming back.  But the TNBC beast came back, and I am not looking forward to all the treatments...

Tonight I feel very, very sad.   I am sick and tired of researching this beast, tired of preparing for the surgery.  Tired of the statistics.

I want to go to a place where nobody knows I have cancer. 

Gin52

Brenda - what a lovely thought!  Cept.....I wanna be where "I" don't know I have cancer...and don't have to deal with it.   Take your time to be sad....then come back and fight like hel* cause we ARE gonna beat this beast!

vangoghpro

Hi Gin52,

I am probably telling you what you already know, but you asked about after treatment when you are HER2+ and the good news is the drug Herceptin which is specifically for HER2+. The drug attaches itself to cancer cells and destroys them. Your oncologist will probably offer you Herceptin in conjunction with chemo drugs and then continue on with it separately until you have taken it for 12 months. For the most part, the drug has few side effects.

I hope this information is of help to you and I wish you all the best in your fight.

Gin52

Thank you Vangogh - I do know about Herceptin.  My sister had cancer that was her2+.  I guess I was hoping to find someone who would tell me that I wouldn't absolutely have to have chemo....but I guess I know I will...just dreading it.  But thanks!

Katey

This site is truly helping me.  Thank you to all who write.  2nd mastectomy 4 weeks ago.  Now that my head is clearing, I'm having a rough time dealing with this.  I loved speaking with women who were long time survivors after first diagnosis, and tried to help others going thru same.  Now, I feel a little lost.

First diagnosis, 1990, age 32, IDC, stage 2, chemo.  Brac test neg.

Now, DCIS in other breast. unbelievable! Had finally gotten past fear, wasn't even worried when going for mamo or biopsy. Decided to go for surgery in hope of avoiding radiation or chemo this time.  Had encapsulated implant removed (this will be 3rd implant) and double reconstruction with tissue expanders in both breasts.  I'm hoping to at least be even for first time in 19 years!

Gin52

Katey,

So sorry u are going thru this!  My 1st diagnosis was 2001, small node neg er+ tumor. I had lumpectomy and rads, then tamox for 5 years,  Like you, I was just getting comfortable with mammos again.  This time - same breast, diff quadrant and new primary.  I opted for bi-lat and glad I did - there were suspicious cells in other breast.  I went to Breast Center in New Orleans for immediate reconstruction (diep).  If you have problems with implants, you might want to check them out.  www.breastcenter.com   There is a forum for "NOLA in Sept" that convinced me to go there.  Good luck with whatever choice you make, and hang in there, it will get better!!! We are all here if you need us.......Ginnie

Katey

Thanks Ginnie!  I checked out NOLA it does sound good.  I'm in NE and found a great PS in NYC, have just begun the double expansion, hoping all goes smoothly:)  When I was first rediagnosed  kept wishing I had done a bilateral first go around, but I guess back then it was hard enough to deal with 1.  So here we are!  Just getting used to the abbreviations, what does diep mean?  Your surgery is pretty recent, hope you're feeling well today.

Jennifer, did you save written copy of pathology report?  Could possibly help.  I had brac test and was told my daughter would be neg because I was.  It is a long process, Yale had me go thru a "therapy" session first to make sure I could handle results, after all we've handled are they kidding? 

Wish all of you well.  Today I'm going bring some beautiful fall branches of leaves inside.   And deep breathe

Gin52

Hi Katey...  DIEP is basically the same as the older tram flap surgery, except it does not use the stomach muscle - just the tissue, so recovery is much faster and easier, and not as many complications such as hernias, etc.   There is good info on the NOLA website - both types of surgeries available and  descriptions of what they are. Check it out..... There are several other good centers that does these surgeries, just know most about NOLA.  You are taking charge of your life and THAT is the main thing!

Ginnie

Katey

Just thinking about all the differences from 1990 till today.  Maybe you have some changes that you have noticed to add!

Amazing what was not available:

DIEP, sentinel node biopsy, internet!, HER test, Brac test, A/B staging, digital mammography, stereotactic biopsy, AlloDerm, short hospital stays ( I was in for 6 days begging to go home, this time wanted to go home within 24 hours and I was out of there!) first time during hospital stay we actually had group sessions (think they were mandatory) with long time bc survivors visiting us at MSK, took flower arranging, sat in on arm exercise classes.  What I never had was meeting or talking with anyone else in their early 30's. Heard there were some. I ran in one of the first NYC Susan Komen Races for the Cure!  My PS says I won't feel as much pain with expanders this time, so far so good, we'll see tomorrow

 For some reason these thoughts cheer me up, maybe things have gotten better? One thing hasn't changed, I'm still crazy hopefull!

Gin52

Katey, having hope is the one thing that does not need to change!!    We have so much more to be hopeful about today than ever a year ago, and certainly more than when I got my 1st diagnosis in 2001!.  Here's wishing the best outcome for all of us!! (a few prayers dont hurt either! )

Myrajuc

Hi,

IDC Stage III-B in September 06.  Neo-adj AC and Taxol/Herceptin to shrink, didn't shrink.  10+/16.  Right Breast Mastectomy, Chemo Taxol/Herceptin, Radiation.  Then continued to Herceptin for a year (June 08).

Symptomatic coughing October 08, confirmed Stage IV Mets to Lungs and Rib (bones) February 09. Was on Oxygen for 3 months, fluid drain in lungs.  Navelbine, Herceptin and Zometa.  Stopped Navelbine September 09 (take a break, bone pains).  Continued Herceptin and Zometa.

Early November (a month ago) lump in left breast.  Hard and big, around the nipple.  Similar as right breast.  Confirmed 2 lumps and IDC.  ER/PR-, same as previous right IDC.  Waiting for Her2 status.

IF Her2+, then it's a recurrence. 

IF Her2-, then it's a new cancer.  Then mets to lungs and rib could be from the new cancer?  Should consider Lapatnib (who here had/has Lapatnib?  I haven't had time to research).

Either/or would continue with chemo.  Question is, what chemo combo?  And continue with Herceptin?  Of course Zometa.  But anything else for the bone?

Had MRI for back, diagnose is not mets, but arthritis, or spindylosis.  I'm 40 right now (was diagnosed at 37).  Will need to schedule with ortho for treatment (radiation? therapy? just Zometa?).

Surgeon not sure to do SNB.  What for, he said? I will be treated with systemic chemotherapy anyway.  I want to know!  So he will do an SNB.  My Left Breast Mastectomy is tomorrow.  Question is, if SNB is positive, do we remove the lymph nodes?  I no longer have lymph nodes on the right from the previous mastectomy?  Radiate or just trust chemo should work?

Need to know your input, please!  I will check back after I get released from surgery.

Thanks!

Diagnosis: 9/14/2006, IDC, 6cm+, Stage IV, Grade 3, 10/16 nodes, mets, ER-/PR-, HER2+

hrf

Myrajuc, so sorry the way this has gone for you. I don't have any answers to your questions but as someone who has had 2 different bc primaries, I do empathize. Wishing you all the best and hope you get the right answers to your questions. Stay strong and keep fighting.

Nancylm

Dx in 1987.  Mastectomy with clean nodes.    No further treatment.

Recurrence  24 years later in 2010.  Metastatic BC to lungs found during a regular yearly physical.

CT scan, needle biopsy, tiny nodules in lungs.  Started Arimidex, and so far no major side effects.

VJSL8

my story is similar to ninalee--1st diagnosis 1987--lumpectomy with radiation, CMF, tamoxifin 1.5 yers then 8 years of megace, 0/18 nodes, ER+. 2nd diagnosis-8/10--BM with immediate DIEP flap, currently on Arimidex with no side effects.

After 23 years, I really thought I wouldn't have to deal with BC ever again and then it pops up. Definately a calmer situation this time--knowledge is power. I've had one PETscan and it was clear. My Onc. wants to do them every 6 months but I've decided to decline unless I have symptoms or my tumor markers go wonky because even if mets. were developed, I don't think I could ever go through chemo again. My first time, there were no anti-nausea drugs and no matter how much they tell me, chemo is different--my body still remembers how horrible it was, so I don't see a need to find it early. I'm not afraid to die, but I am afraid of suffering.

IllinoisNancy

VJS, I'm with you!  I would NEVER put my body through chemo again.  It robbed me of all QOL.  I just finished two weeks ago and my body feels so tired and broken and sore.  They can cut anything they want out of me but.................no more chemo. 

brendaclee3

Hi Missunshine.  So sorry about your reoccurence.  I'm scheduled for DIEP on May 25th in Charleston with Drs. Klein, Baron, and Craigie.  When is your DIEP scheduled and where?  I was first diagnosed in 1998, but so far, no reoccurence.  I had a histerectomy with removal of ovaries in 2005 just to be on the safer side.  I wish you all the Best.

Aerial

 I was really, really disappointed, sad, mad and scared when my last mammo (in May) came back with a new primary tumor in the same breast.   (I had a lumpectomy in 2003)!  Gaah!

I've had my mastectomy (June 8th), had a drainage tube for 16 days and I'm still waiting for them to discuss chemo with me.

I'm feeling discouraged, right now.  Yet, I'm holding on to hope due to my good pathology report.  The margins are clear and lymph node negative!  Yaay for that!

Hang on girls, we can make it through this!

inmate4232010

Hello Ladies,

I was diagnosed with BC again.  My first diagnosis was 4.23.2010.  TNBC IDC 4cm tumor, lumpectomy (6.8.2010) with clear margins and 3 positive nodes.  I had 4 rounds of dense dose AC followed by 12 rounds of Taxol then 7 weeks of rads with 5 boosters.  PET scan in between chemo and rads showed internal mammary nodes with small amount of cancer but proceeded to radiation thinking that would take care of it.  Mammogram the end of April showed all clear.  Breast started to feel different the beginning of June (enlarged and red).  DR thought it may be radiation caused but set up first post-treatment scan for end of June.

MRI on June 24th 2011 showed 12 spots of "concern" in the effected breast "lefty", but no where else.  Had my biopsy on Wed and the results on Friday.  The cancer is back and with a vengeance.  I now have 12 small to large IDC tumors in lefty.  Don't know yet if it also TNBC. WTF!  This was supposed to be my first "hooray" scan to kick off my back-to-normal life.  Instead I see my Dr on Tuesday to discuss mastectomy and follow up treatment plans.  He said he hasn't seen this before and is concerned at the aggressive nature in its return.  I'm thinking that maybe it really never left.  Has anyone else had it come back right after treatment?  I haven't been clear minded enough to read all the posts.  The last treatment was pretty aggressive and I'm scared to think about what the next treatment has in store for me.

Thanks all for listening.  Please feel free to send me any advice or experience you may have.  I just don't want to think about this anymore.  This diagnosis seems to hurt a lot more than the first one.  

hrf

I found the second dx to be much more difficult than the first - devastating in fact. I understand how you feel

Aerial

(((((inmate)))))   ((((hrf))))  Hugs to you, girls.  My heart goes out to you.

I was heartbroken to hear about my new tumor.  I've had my mastectomy this June, the drainage tube came out after 23 days, I now have a comfortable prothesis and helpful compression bra.  I'll find out this coming Friday about chemo treatmets.  

inmate-- I wish I could tell you the link but, I've seen photos of cancers that return to a recent surgical scar and in a reconstructed breast.  So, it has happens. I told my breast surgeon that "the beast" seems to have a mind of it's own..You've got a lot of information, treatments and stuff to process.  Take time for yourself. Hold the love and prayers close to your heart for strength.  I hope you find some peace in the midst of this storm. 

inmate4232010

I go in for my PET this morning and am very anxious.  I swear since my second diagnosis I feel more aches and pains and wonder about every little one.  Dr says he also wants an SAT and bone scan.  I don't know what an SAT is but the bone scan also worries me.  I finally get to see the surgeon on Wednesday.  Why does the process take so long.  Just get me into surgery already! 

 Hopefully I will know later today if this nasty thing has spread.  This kind of suspense I can live without.  Thanks for listening.

voraciousreader

Inmate..you're in my thoughts and prayers....

bak94

inmate, I hate scanxiety! I have a pet scheduled in 3 weeks and I am already nervous! We need not to think about it:) This is also my second diagnoses, but my first one was 8 years ago, and yes, it seems the second one is harder than the first! I thought I put all this behind me, and them bam! When will you get your results? Did you find out what a sat is? Are you being treated at swedish by any chance? That is where I go.

inmate4232010

Good Morning Ladies,I have good news.  My cancer has not spread and is just localized in "lefty".  This was the best news I think I have ever heard in my life.  Now I can stop thinking about everything being my last and move on to concentrating on kicking some a**!  I will be scheduling my surgery soon and then off to chemo for the second summer in a row.  I can do this!  Thanks for your kind thoughts.  I feel lucky to have found such a group to vent and share in the circle of encouragement.  I hate the reason we are all here but am blessed to be a part of such a strong group of fighters.  Love and white light to you all!   BKJ66  I did not find out what a SAT is.  I will ask my Dr next week.  I wasn't supposed to get my results until Monday but the wonderful Dr K (from Swedish) got the results in record time and called me last night (same day as scan) at 7:30.  He rocks in that department and always makes sure I don't have the agonizing wait for results.  I hear you about the anxiety of tests.  Should we really ever have to wait?Enjoy your weekend everyone.  I know the sky looks brighter for me today!  

Aerial

Hooray, inmate--your news is indeed good!!

Your doc really rocks, too--what a sweetheart!

(I just found out I have to wait two more weeks before I know if I'll need chemo. My tissue/cells/genes have to be oncotyped! Ack.)

inmate4232010

Aeriel  I am so sorry you have to wait so long.  What the heck is oncotyped?