ER/PR negative Her2/neu+ WITHOUT chemotherapy?

Hi Everyone,

I'm just wondering if anyone else has been in a similar position as the one I'm in and can perhaps tell me what to expect.

Via ultrasound following an abnormal mammogram, I was diagnosed at Johns Hopkins in December 2007 with "probable DCIS" in my right breast.  Because I had a unilatral discharge in that breast, they recommended I promptly have a ductal excision and referred me to a breast surgeon at a leading Breast Cancer Center in Chicago, my permanent place of residence.

For whatever reason, the Chicago breast surgeon chose to begin "from scratch" and have her own films/ultrasounds conducted by her Radiology Dept..  Based on the radiology report and a subsequent core needle biopsy, the Chicago breast surgeon decided that it was most likely a mere "papilloma" and a ductal excision might not even be necessary.  Because the biopsy left me with an infection lasting several weeks, I was relieved to not have to go through with the ductal excision, but a relative in the medical field urged me to insist upon it anyway.  So, I did.  Maybe because I wasn't considered a "critical case," the earliest they would schedule me for a ductal excision was nearly 2 months later.  

After the ductal excision, my surgeon came out to the waiting room and reassured my anxious husband that "it looks like it's just a papilloma."  What a relief!  Though I was still groggy from the general anesthesia, we celebrated the good news by picking up some carry-out salads and eating them in a park overlooking Lake Michigan.  We were so relieved to the point of euphoria.

A little over 24 hours later, however, the breast surgeon telephoned me, sounding more solemn than usual.  The pathology report was "not as expected" and I would need an "immediate mastectomy and sentinel node biopsy."  She had already scheduled me for these operations to take place in just a few days. The path. report revealed I had Invasive Breast Cancer and was 100% ER/PR negative, 100% HER2 positive, and Grade 3.  The primary tumor was 7cm, and the invasive tumor was a little over 1cm.  

 Frightened out of my mind, in total shock and utterly devastated, I went along with the mastectomy and sentinel node biopsy a few days later.  At the same time, a young plastic surgeon on the breast surgeon's team inserted an expander to make way for a saline implant.  All seemed to have gone well, especially when the breast surgeon--based on the second pathology report--declared me "node negative."  They kept me overnight and sent me home to deal with my drains and such on my own.  Despite their reassurances the drains would have to be tended to  for "only a few days, 2 weeks tops," those drains would end up being in place--and tended to by myself--for 8 more weeks.

Moreover, a week after surgery, the breast surgeon called me to say that the pathologist had "changed her mind."  Though there were no "clusters" of cancer cells found in the nodes, there were "lots and lots of solitary cancer cells" found.  So, while technically I was "node negative," I really should have axillary surgery anyway.  She said I was scheduled for such surgery within the week. 

While in prep. for that axillary surgery, however, a resident was shocked by the amount of necrosis (2 inches high by 5.5. inches wide) at my incision.  I had noticed the black stuff but thought it must be some kind of stitches or something coming through.  (I know I sound ignorant, but I've never before had surgery, and no one told me what to expect or watch out for.)  They cancelled the surgery and sent me immediately to the plastic surgeon.

 With a temperature of 102 F., and clear signs of infection, the plastic surgeon immediately admitted me to the hospital, where I stayed for a week with heavy amounts of antibiotics administered via IV.  They also administered Benedryl via IV, as I was highly and systemically allergic to the antibiotics.  The diagnosis was "necrotizing cellulitis."  After being discharged, I was brought back to the hospital weekly for the next 6 weeks to conduct "debriding sugery" (cutting away the dead tissue, both outside and inside the wound.)  By the sixth week, my expander broke through the excision, and they took it out, leaving a large gaping hole where the mastectomy had been done.  They said it would have to "heal from the inside out" and that it might take "months."  They weren't kidding.  It is now the middle of September, and the wound is STILL not fully closed.

A few weeks later, I went into anaphylactic shock due to a severe allergic reaction to the antibiotic they had me on (the seventh one they'd tried, as I was allergic to all of them thus far.)  When they did a culture, they found 4 different bacterial colonies growing in my wound, all of them Grade 4++++, and one of them was MRSA.  They put me in isolation and treated me aggressively via IV,  at the same time counteracting my allergic reactions with IV Benedryl.  As a result of aggressive treatment in the hospital, and subsequent home care, I am now infection free.

Only after the infection(s) were cleared, however, did my wound begin to heal.  Something I never knew is that when the body is fighting infection (or overwhelmed with it in my case), it does not make new tissue.  So, now that the infection is behind me, my deep chest wound is finally beginning to heal. 

 However, as I understand it, the optimal time for chemotherapy for aggressive cancers (which mine undeniably is) is within three months of diagnosis/surgery.  We're way beyond this now, as my mastectomy was done at the beginning of May, 2008.

My oncologist wants me to get started on Chemo at the middle of October (when my wound is expected to finish healing). But to be honest, I am absolutely exhausted--both physically and mentally--from the ordeals I've been through these past 9 months.  Before I even underwent the surgery, I was not in the best health.  I have chronic colitis (with frequent fecal incontinence) severe arthritis (preventing me from walking far or standing), and an irregular heartbeat.  Due to these pre-existing health problems, my quality of life has not been the best for the last few years.  I can't imagine how I will be able to withstand chemotherapy.

If I don't go ahead with the chemotherapy and Herceptin, I know I probably don't have much longer.  Yet, as things stand now, I don't know that I might even live through the ravages of chemotherapy.

 Do any of you know what I likely have ahead of me if I forego chemotherapy?

 I'm sorry this is so long.

Best to you all,

Cammy 

Oh, Swimangel, thank you so much for your reply as well as for your reassurance!  But I am so sorry that you went through quite an ordeal yourself. May all go well for you from hereonin!

I will definitely ask my oncologist (3rd opinion so far) about Navelbine. And thank you so much for that wonderful link!

Sending all good thoughts your way and wishing you the very best.

So many thanks again,

Cammy 

Oh my goodness, you truly are an angel!  Thank you so much for giving me that other link and most especially for making me feel so much less alone in this battle.  And you are so right about wishing they'd hurry up and find the CURE!

Meanwhile I'm bailing like crazy right along with you and everyone in this boat!

So many thanks again,

Cammy