Am I the only one with a recurrence/regional spread?

HVV, you are NOT alone. I had stage IIIB  IDC in my left breast, did everything "right", aggressive chemo, Bilateral mastectomy, radiation and tamoxifen for 5 years. 2 DAYS short of my 5 years clean, my onc found lumps under my arm on the RIGHT side. He was convinced I was stage IV and that it was probably in my bones, so he ordered a PET scan and told me to be prepared. He also said that if it was stage IV, they would probably just treat it with the other hormone pill, and do the Lupron injections to kill my ovaries. Amazingly, the cancer was ONLY in the lymph nodes (4) that he found. So, change of treatment...surgery first to remove the nodes (and I insisted my ovaries be taken out as well) and implant the port, because this was a stage II, so I would be receiving chemo again...Never so happy to hear THOSE words! My onc was amazed, and contacted fellow docs in Boston and Cal. to try to figure out how this could be. I had to go for genetic testing, etc. He thinks there were probably some minute cells from the first CA that were in the right breast and had spread to nodes. I think there are probably many of us here. What was frightening to me was that even though I had treated it so aggressively the first time, it came back. I got a real wake-up call!

Hi Ladies -

I also have had a similar dx with the tumor on the opposite side from the original cancer. I had a left side mastectomy on 2001, a recurrence on the left side in 2010, then the lump on the right side. I had 9 rounds of Taxol, surgery to remove the tumor, then rads for 5 weeks, then Tamoxifen.. My ocologist said my cancer was stage IV. My surgeon also called back east to a friend at some big hospital to discuss my case because this is not usual. I had a PET and no spread other than lymph nodes. This was all almost one year ago.

No advice, just my experience.  I too felt alone and kind of pissed off about the cancer returning in the lymph nodes, after a sentinel node being negative.  I was dx 2006, bilat mast with imm recon.  FECx6 ( treated aggressively at the time).  In 2009 I felt a lump in the armpit and there were 9/23 +ve.  I had an axillary dissection, taxotere for 6 rounds, then radiation.

In 2011 dx with bone mets.  At present no further spread. Grateful for that..... Get results on Monday from recent bone scan and CT.

One step at a time.  I came here to lurk, post more now.  Also did some yoga, art therapy and I see a social worker.  Come here to vent, there is great support.

You are not alone...

I am on my second recurrence within  5 years of my initial diagnosis.  I never thought this would come back on the first recurrence let alone again for a second time.  Chemo, radiation, surgery and tamoxifen, none of these can seem to stop this.  Wishing you all the best results possible with no spreading and most importantly no more recurrences.

Yep, I got a shocker too when I was diagnosed w/recurrence about a month ago.  It had been 6 years since my mastectomy followed by 6 months chemo. PR + . I had celebrated getting past the 5 year mark w/ the all clear. Now getting daily radiation and back on Tamoxifen. My Onc will not tell me that I am Stage IV even though I have a pretty big sub-clavicular node which was biopsy positive and a 1cm area on my left lung that may be spread too. He said they did not want to lung biopsy ( not sure why) I know that area may be too difficult to surgically get too.  My CEA and CA 15-3 were normal and Onc told me they are not reliable markers. Did they run them on you too. Mine chose not to do PET scan but did a bone scan, chest CT and abd CT. ( bone and abd organs clean )  I feel so bad when I see a young mother getting rads as she has no hair (post chemo) still. Today had to bring along her 3 kids- how tough she is being poor thing.

Rene

babyruth any radiation after these recurrences?

BabyRuth - Which lymph nodes got the cyber knife?

My subclavicular node is wrapped right along the major vein under the collar bone so removing surgically out of the question. Routine external Rads all that was offered. Today #13 out of 28.

Not to many SE so far except fatigue. No energy for anything.Can't wait to be done. Hugs to you.

Denny123- Incredible perseverance I must say - sure gives me encouragement to keep trying. Your HER pos adds another dimention for you. I have now finished RADS a couple of weeks ago and supposed to start that Faslodex shots as I failed w/all the pills. Another scan in 3 months too. Not sure if I will head the Gemzar way  or not as mine is Estrogen fed. I told him I wanted a few weeks to recoup mentally and physically before proceeding. Finally letting the grey hair come in and quit coloring as it was too painful lifting my right arm, its so funny how I know . Look much more like my son who prematurely went grey in his twenties...ha

lukesnana06, I'm sorry about what you are going through. It must be a huge shock.

I hope you can get treatment which quickly resolves your pain and the lumps.

lovetodance - I'm not trying to be negative, but if lukesnana had bulging disks, the doctor would've told her so and there would be no need for a PET scan. I was complaining of back pain a few months ago and they found bulging lumbar disks on an MRI so no further imaging was ordered. Of course there are other benign causes of back pain that can look suspicious on MRI so it's great that they are doing a PET to get more information. Lukesnana - I hope it ends up being something minor and easily treatable.

After left mastectomy 12/18/12.... started Tamoxifen in03/13.. headaches were unbearable so MRI showed large tumor on pituitary gland..Removed on May 21 2013.  Tried Tamoxifen again but the side effects were horrible headaches never got any better so onc took me off of it again by 08/13.  Due to such stress and painful headaches I lost my by Plus-HD-1.6" id="_GPLITA_25" style="background: none !important; margin: 0px !important; padding: 0px !important; border: currentColor !important; border-image: none !important; width: auto !important; height: auto !important; text-decoration: underline !important; vertical-align: baseline !important; float: none !important; display: inline !important; min-height: 0px !important; min-width: 0px !important;" href="#" in_rurl="http://i.txtsrving.info/click?v=VVM6NDA4NzI6MTQzMTptYW5hZ2VtZW50IGpvYjphZDgxYmE0OWM0MzA4ZjNkYWQyMjBiYmE4NmVhZjBhNTp6LTEwOTQtMzUwMDA5OmNvbW11bml0eS5icmVhc3RjYW5jZXIub3JnOjUwODQyOmZiNmU1OTUwNjI3YzliNmY1ZjY1YjFhMzZmNmRlY2YyOmVlYjI2MGQ3NWM0MDQ0NDU5ODFiYjM4MzVmYThmYzcw">management job of 8 years along with primary insurance.  very depressing right? It gets worse. I am not sure if anyone else has ever experienced this or if it was just me but upon returning home from parents house ab 300 miles away I started to feel pain at the end of mast scar.  I noticed a lump there and it was hurting pretty bad for the 5 hour drive I noticed that the painful lump started to move across my chest within 8 hours it had moved to the left side of my right breast.  I had already scheduled an appointment with onc weeks earlier so I knew I could count on him to help me when I went in the next day  I was also scheduled for a follow-up with surgeon the following day.  I told both drs. about the painful lump on 09/11/13(onc) and 09/12/13 (surgeon).  I requested a mammogram from both doctors but was dismissed and told that there was  nothing to worry about and that insurance would not cover a mamm until a year after surgery.  I was very concerned that they did not take me seriously.  The surgeon scheduled my mamm for 12/02/13 so I waited (stupidly)  After the mamm I was told that I needed an ultrasound.  This did not surprise me at all I can still feel the lump.  I saw my onc on 12/10/13.  I asked him why he did not listen to me when I told him about the lump 3 months earlier.  His exact response was "I don't get paid to listen to you".  I was in shock!! I am definitely changing doctors but in the meantime I had to have a biopsy on 12/18/13 (exactly a year after mast at the same hospital).  I asked my surgeon to please tell me the results over the phone as I have been waiting over 3 months to find out.  He said that it is breast cancer and I will find out more details on Monday.  I said all of this for 2 reasons,,, has anyone else ever felt a tumor move from mastectomy scar to other breast? and 2nd PLEASE PLEASE PLEASE  don't do  what I did and be ignored... we know our bodies and should never be dismissed this way.  If you feel you have an important health issue and your doctor doesn't,pleaseget anotheropinion. I could already be in treatment or even done with treatment if my doctors had paid attention to my concerns when I presented them.  I am not seeing either of those doctors after I get my pathology report tomorrow.  I have called cancer treatment center in Tulsa and the staff I spoke with there gives me some hope that I will get the medical care I need.  Prayers and best wishes to all survivors their families and friends.  Also on a side note... could the drs failure to diagnose earlier be considered negligent? Just curious if anyone knows.  I would love to keep another person from having to suffer in this manner.