newbie - recurrence after 14 years

blondiex46

I got the news 14 years ago when my twins were 2 they are now 16 (I have 5 children total the oldest is 35, and 4 grandchildren with 2 on the way due in Jan and March) and it is back, am adopted and found my bio mother and she died of a recurrence of bc (before the 1st diag. that is what made me get a mamo. was 42).  She died after 15 years, so of course I am nervous.  Just recently found out and the first time had lumpectomy, 6 wonderful months of chemo and r6 weeks of radiation.  This time it was found out quite by accident.  I cough alot from the damage the radiation did to my lungs (they have a name for it like radiologicisis or something like that) and I thought I broke my rib coughing and went for a chest ex-ray  and the "mass" was found in the same breast (r) underneath my pectural muscle and according to my onocolgist it is inoperable cause of where it is.  I did get a PET scan and there are spots  (5)on my lungs but they are not big enough to do a biopsy of he said about the size of the end of a pin and my lymphnodes in my chest are swollen (5) pretty big.  He put me on Femara which is HT, said that it didn't spread to any other parts of my body. He said it was about 3cm, I think.

Not happy at all that there is a tumor growing in my body and nobody can do anything about it.  I decided last week to get a second opinion, which never occurred to me the first time, so I have an appt on the 6th of January.  They have sent my information to Fox Chase Cancer Center in Philadelphia and I am waiting (that stupid word) for them to call for them to tell me to bring the slide and the CD which apparently contains information.  Also, the ono said that they consider it stage 4 cause it is a recurrence (what is that?)

I work a PT job at a local department store and am on MA and can't get a full-time job now cause of the insurance issue. I also watch my grandson (3) while my daughter works). I am a single parent but do have a good support system.  Have someone or 2 go with me to the appts. and pay attention while I am not.  So now the dreaded waiting game, taking the medicine trying to not ruin everybody's Christmas, not being able to shut my head off and wondering what is going to happen now, while trying to remain positive, not letting people see me when I am upset. 

I appreciate this site as you all know, cause some of you are where I am and some have been there, thanks for listening, I will be lurking and hanging out.  After I just wrote that I think I will go get a piece of cake with ice cream on the top...cause I need it, lol....

 Sandy

pitanga

Sandy,

I know from experience, this is a very hard blow you are dealing with. My recurrence and mets came 9 years after my first round with BC.  It took me so long to be able to relax and believe I was through with cancer, then WHAM it was back.

Some ladies have had very positive responses to hormonals. I myself dont know where i stand yet because I´ve only been on Arimidex for six months, but I hear stories of tumors shrinking considerably and even disappearing. It can happen. 

I am sorry you have become a member of this crappy club that none of us want to be part of, but since you have, c´mon in, sweetie, we are here to help.

Lisa 

helena67

I am really sorry to hear that this came back after such a long time. THat must be a great shock. Who would expect this?

At the same time, that is also somewhat positive news in a strange way (that it took so long to recur). That means that chances are good that with treatment, it may stay away again for a very very long time!!! For example with hormonal treatment. Other ladies may chime in here, but I wish you the best.

-Helena.

Anonymous

Sandy, my progression was to my spine was found by accident.  My onc was concentrating on my complaint about my lymphedema arm and under my armpit.  She decided since I had a large tumor and nodes positive after neoadjuvant chemo (chemo done before mastectomy) she wanted to check it out.  First it was just a CT scan...then she "threw in" a bone scan.  Well, the CT scan showed a lesion on the L1 vertabra commenting that it was highly suspicious for mets and suggested a bone scan.  I did the bone scan right after the CT and it said there was a lesion on T12 that was concerning for bone mets.  To make a long story short, I decided on a biopsy which showed, yep, there were cancer cells.   I was taking one of the AIs, Arimidex, and she changed me to Aromasin.  I go back next month for my three month CT scan to see how this AI is working.  I'm hoping it's working very well!

It's amazing how long some women go withoug the "new" diagnosis.  I'm hoping that you get great results with the AI you are taking.  It's a good thing to get a second opinion if you do not feel confident with the first.

Good luck to you and let us know what you find out.

spar2

Sandy, very hard blow, glad you are getting a second opinion and also very glad you have a support system and someone to go with you.  That helps a great deal.  We will be here for you too.  I wish you the very best.  Please keep coming here and let us know how you are doing. In my prayers.

cancersuks

 I'm sorry to hear your cancer has returned!  Mine came back

last month after 12 years; it is a terrible blow, words

are not enough to describe the emotional pain.

AussieSheila

Another one here with recurrence after 13 years, one year on Arimidex and now have new met in vertebrae in neck.  Start 10 rads tx for the pain, not curative, in two weeks.   Never rains but it pours.

Sheila.

blondiex46

Fox Chase Cancer Center is who I went to for the 2nd opinion and they said that #1) they don't do surgery on recurrences, which to me is stupid, who made that rule up, I have tumor growing in me and they have rules well I do have about 5 nodes in my chest that are cancer they assume and some in my abdominal area and some nodels on my lungs but they aren't big enough to biopsy (yet I guess); #2) what Crozer, the hospital I am going to  is doing the right thing with the Femera, until it doesn't work anymore..so my question is if they only do the scans every 3 - 4 months what if the Femera stops working say tomorrow and I don't get the scan for another 2 months, that means the cancer is spreading for those 2 months....Emotional blow, that is a good term for it, I am really upset about this cause the tumor is still there.  I forget about it for brief periods of time, other people forget about it all the time cause I look normal and I am not going to the drs. and getting chemo, I pop the pill in the privacy of my home so they aren't living with it (my kids, don't have family, parents are deceased and am adopted only child). As others that have found this site, thanks for being here, I can vent and be mad and pissed off and I know you all understand, I really feel alone cause there really isn't anybody but you guys to talk about it with, so thanks for being here in in case I don't say it often enough!!!

Sandy

33skidoo

Sandy,

There's nothing wrong with getting a  3rd opinion.  I started with Tamoxifen, then switched to Aromasin when I hit menopause.  I didn't get surgery to remove cancer, but to stabilize my broken vertebra.  I have had significant improvement and have remained stable for over two years on just the hormonals and zometa.  Still, there was a fairly recent study that seemed to indicate that there is a survival advantage to removing the breast tumor, but it goes against prior studies that show no survival advantage.  That was a really hard thing for me to get my head around.  So get another opinion.  I suspect that you could find someone to remove it if you look hard enough.

blondiex46

I am sure I could but I remember how it used to be "as soon as air hits it, blah, blah blah.....so between a rock and a hard place....

susanmary

I am Stage IV with bone mets. I had recurrence twice, but only after short periods of time. After mastectomy I was on Tamoxifin (15mths) when the cancer localised. I had "red devil" chemo and then was on Arimidex (13 mths). Cancer recurred.  Rads and thenXeloda came next and then on to Aromasin for the last 4½ years. I have bone mets and have been having Zometa for nearly 6 years every 3 months. OOPS - forgot to mention that I had the lumps removed each time.

Hope this is of some help to you.

I am due to have lung X-rays soon, so please hold thumbs that all is well. 

Take care 

susanmary

I am Stage IV with bone mets. I had recurrence twice, but only after short periods of time. After mastectomy I was on Tamoxifin (15mths) when the cancer localised. I had "red devil" chemo and then was on Arimidex (13 mths). Cancer recurred.  Rads and thenXeloda came next and then on to Aromasin for the last 4½ years. I have bone mets and have been having Zometa for nearly 6 years every 3 months. OOPS - forgot to mention that I had the lumps removed each time.

Hope this is of some help to you.

I am due for my lung x-rays and please hold all those thumbs out there. Thanks 

Take care 

kap24

Hi Sandy,

 Sorry to hear about your recurrence.

 Are you sure Fox Chase said they wouldn't operate? I am sure I have heard of women who had a recurrence and were operated on.

Please seek another opinion .

Kathie

blondiex46

yep that was 2nd opinion, said almost verbatim......when there is a recurrence we do not operate.....didn't ask why, that is what my onoco told me also, that the place that it is (under pectural muscle) and that it was a recurrence, they don't operate and also that it has gone to the lymphnodes in my chest and my underarm a couple in my stomach area.  There were some nodles on my lungs but not big enough to biopsy, we we know it has gone there but they don't want to test it.  The funny part is I had a mammogram done during all the other testing and it came up clean no recurrence...guess that is cause the tumor is under the pectural muscle as I said, not in the breast as you would think a breast is.   Thanks for responding.. the more I talk about it and the more I write the more hopeless it seems.  People would say, well you are here now make the best of it, wish I could...not thinking that way....1/2 empty that glass is...

blondiex46

Went to the Onoc the other day and he said that they are going to do a CT scan on March after 3 months.  They usually wait  4 - 6 months but he wants to see if the Femera is working.  Spent most of the time crying cause I still have issues about them not being able to take it out. He stressed that the location (under pectural muscle) was one of the reasons and the other is there is no point cause it wouldn't extend anything..doesn't want to disturb anything and said sometimes going in and disturbing makes it worse so do the HT and see what happens.  Remember that it has spread to my lymphnodes in my chest, under my arm, my abdomen and there were nodels on my lungs...anyway crying telling him how I am depressed (said it was side effect of the Femera) saying  that I feel terminal, no positive anything, not seeing light at the end of the tunnel....he was wonderful, said it wasn't all that bad  to relax and yes I will probably die from this disease but not tomorrow or the next day and just again to take the meds and see what happens.  Actually I felt better when I left, have no idea why, all I know is that I was ok with this recurrence until I found out they didn't want to get rid of it.

Thanks for listening, and have a good weekend, will check back tomorrow night!!

Sandy

zoey1

Last week's MRI, followed by ultrasound and biopsy, revealed a new 5mm cancer, same breast as last time, grade 2. Its been 4 years since I had any treatment (lumpectomy and radiation). The side effects of tamoxifen were awful for me so I opted for a holistic course instead. I was given a 4% chance of reoccurrence (1% a year) so it seemed reasonable to stop. Any one out there facing a similar situation? Wondering what my treatment options are? No surgery yet but doctors don't think it spread.

blondiex46

I am so sorry, recurrences have a way of knocking the wind out of you...where is it located?  I didn't take tamoxifen, refused it, don't think it would have changed anything and that was 13 years anyways..My thoughts are with you