So anxiety-ridden and fatigued...

Janathan

In November 2002 I had DCIS on the left with lumpectomy, radiation, and Tamoxifen x5 years.  Left breast is clear, but recent mammogram and ultrasound showed suspicious area on the right.  Ultrasound needle biopsy results came back DCIS, grade 3, which is all I know at this point.  I've opted for bilateral mastectomies and will have surgery soon. Saw plastic surgeon who recommended implants for reconstruction since I'm too small for TRAM.  Plan is to put in tissue expanders at time of surgery. Is reconstruction a good idea with grade 3?  Oncologist said I probably won't need radiation or chemo after mastectomies but surgical biopsy results will determine that.  What's your experience?  I see the general surgeon again next Wed. and have a lot more questions to ask him.  Do you call this "recurrent" breast cancer if it's on the opposite side? I'm on an emotional roller coaster this time around and stressed and fatigued.  There's never a good time to find out you have cancer, but our youngest son is getting married in two months in another state so I'm worried about what will need to be done when and how I'll feel by the wedding, what kind of dress to shop for, etc.  Doc said lump is pea-sized...I think 5 mm...but can't find a chart on the internet?  Thankfully I have a very loving and supportive husband of 34 years, 3 grown cihldren & a great family.  I don't know anyone who's been through this though.  Thanks for listening.

TenderIsOurMight

Dear Janathan,

 Always hard to read the post of anyone who has gone through this once, and now faces it again. I am so sorry, and heartened to read you have a supportive family. I don't know if you visited bc.org in 2002. It's a wonderful place for questions just like yours, and for further and wholesome support.

I had invasive with extensive DCIS and was advised to have a mastectomy. I had a positive node, pretty involved, so elected to have radiation. My tumor grade was II. In 2001, the OncotypeDx or Mammoprint were just coming on the scene, so none were done. 

In your case, one of these genetic tests may greatly help to further elucidate treatment in stage 3 DCIS, although maybe they don't offer it unless it's invasive. Still I would inquire. 

Radiation and mastectomy limits reconstruction. It doesn't forbid it, but a good percentage of women have subsequent trouble with scaring (fibrosis) or capsular contracture (hardening of the chest wall with fibrosis) or even blood supply problems causing failure of the skin to accept the expander. I wonder if a second plastic surgeon might be of benefit to you. All types of autologous or self donating sites are used nowadays, and we almost all have at least one area which is large  enough. One that comes to mind for example is latissimus dorsi or Lgap. Often a plastic surgeon may be more comfortable with one particular surgery, and hence direct the patient to that type or no other. That would be a compromise given today's plastic surgery expertise.

I did have radiation, tissue expanders, and then silicone implants but the interval between was long for medical reasons which I think greatly helped. It worked ok for me, but given what I now know, I'd encourage you to get a second plastic surgeon's opinion to discuss the full breath of options.

Best,

Tender

hollyann

Hugs Jan  sorry you had to return to us........All I can do is provide a cyber hug and wish you the best.....As far as the pea size mine was pea size which is 1 cm........Very small.......Good luck to you, Jan, and God bless.....

Janathan

God bless you, too, and thanks for the info.  Hope you are doing well.

Janathan

Unfortunately, I didn't visit bc.org in 2002, but I'm sure glad I found the site this time around.  It's comforting to communicate with and have the support of others who have had breast cancer.  I was given the name of another plastic surgeon so on your advice will get a second opinion.  I'm going to ask about genetic testing.  Our daughter is concerned about that as well.  I'm keeping a positive attitude but my head has been spinning, so thanks so much for your help and concern.  Bless you, and best wishes Tender.

melmedic06

i too am saddened to hear your news- you make it past the flippin 5 year mark and beyond and maybe take a normal breath every once in awhile and then bam- life sucks sometimes!! my first dx was in october of 04- ILC- 0.9 cms with no positive nodes- i had a lumpectomy and radiation and was told at the time if i would even consider wanting reconstruction i should opt for a mastectomy because the radiation made it virtually impossible to do reconstruction- i did not want a mastectomy and knew even if later down the road i lost my breast i would not want any kind of implants- that cancer was in my left breast- in august of 05 i was dx'd again this time in my right breast with DCIS- a very small cluster- i cannot begin to tell you how incredibly p___ed off i was  at my body- i knew with the ILC i had a good chance of the ILC showing up in the other breast or even a different kind of cancer but i did not think it would be less than a year later- i again opted for a lumpectomy however God was watching over me and the surgical tissue was benign (ran two seperate specimens to be sure) no DCIS at all- radiologist and oncologist both say this is not uncommon to find DCIS on mammotome but benign breast tissue on pathology- i had 6 more weeks of radiation and i am in my 5th year of arimidex (for the ILC)- so i share your sorrow and your frustration but you will find lots of support here and lots of opinions on reconstruction and plenty of good advice from all the well meaning women here who feel your anquish as you work your way thru this- good luck in your journey and keep the faith ladies-

ILC   october 04   0.9 cms  0/5 negative nodes  lumpectomy radiation  left breast

DCIS  august 05  found on mammotome -surgical pathology benign- lumpectomy radiation

nancyluvspink

Hi Janathan - I am wondering how you are doing.  I, too, have had bc twice.  In 2000, at age 35, I had IDC on the left side followed by surgery, chemo & radiation.  In 2006, I had IDC on the right side followed by surgery, chemo & radiation.  I then had genetic testing done and was told I had BRCA1.  In 2007, I opted for a total hysterectomy.  I have two loving sons ages 17 & 19.  In 2008, I opted for a dbl mast. with reconstruction.  I, like you, just didn't want to through it again.  So, I feel I did everything that I could.  I had a tram flap at Univ. of Pa. and am pleased with the final product.  When I read the subject of your topic, "So Anxiety ridden and fatigued", I thought, ME TOO!  Implants were not an option for me, due to being radiated on both side.  Take care.

gigigigi

Hi Nancyluvspi and everyone:  I had a recurrence Sep-08 too and it was found out when I was on the table during a reconstruction operation.  What a nasty way to find out there was another lump on my mast. side.  I am now going for a tram flap in November as implant is no longer an option for me after radiation.   Could you tell me  more about your recovery journey, was it tough ?  I believe if I can rough it out on Chemo, Mast. etc. I can do this too.  I am a size 2 and my PS said I should be OK for tram too.

Janathan

Nancyluvspink:  Thanks for asking.  (I love pink, too!)  Had BMX with TE reconstruction on 7/22 and am doing well.  Will start fills in early Sept. after son's wedding 9/5 in Monterey.  We are thankful that PS has approved the trip to CA, but I would have went anyway!  Anxiety level way down since surgery/biopsy results, as well as finding dress, shoes, bra/pad inserts, jewelry for the wedding.  Yea!  Onco and BS said made the right decision on BMX since path report showed necrosis.  No regrets on my decision.  Working 4 hrs/day from home and get fatigued easily, but loving DH doing housework, cooking, shopping, etc.  Had BRCA1 and BRCA2 testing recently so am anxiously awaiting results and hoping they are negative for daughter's sake.

To all of you:  Thanks for your support.  This website is such a blessing, and I've learned a lot from reading many threads.  So many of you are suffering a lot more than I am, and you are all in my prayers.  Thanks melmedic for your comments, too.  Bless you all, and thanks for being there!

~Janathan