Metastatic Breast Cancer ups and downs.

shooter1
shooter1 Member Posts: 5
edited March 2014 in Breast Cancer #1
I am new here. I don't know where to turn. I was diagnosed in Sept. 2002 with Breast Cancer.
I had a mastectomy of my left breast, and chemotherapy. My lymph nodes were clear. In January 2003 they put me on tamoxifen for five years. My last tamoxifen tablet was Dec. 31, 2008. By March 8, 2009, I was diagnosed with stage 4 breast cancer. I have a tumor on my liver, left hip, sternum and 2 in my R lung. I have been on chemo since April of 2009. 8 weeks on, every week and 8 weeks off. I had radiation on my left hip, which in much better. I am ending my eight week chemo on the 22nd. Also on that day we will be doing a Catscan and MRI. However, this past Monday the 15th, they did a tumor marker test and it had elevated from 33 to 41. I know that tumor marker tests are not real accurate for a lot of people, but they have been pretty accurate for me. I am so depressed. Not only from the 8 weeks of chemo that wears you down, but I was so looking forward to a break and some sort of normalcy for a shor period. What I am assuming is going to happen is another round of a different chemo. How do you cope with the up and downs of this disease? The constant testing, the ever changing you are doing good now, but next time not. If it weren't for my family and our business, I would go on palliative care. There has to be some quality of life in this, I hope?? Any suggestions or comments??

Shooter1

Comments

  • KathiM
    KathiM Member Posts: 8,028 Member
    Cancer stinks!!!
    That's about the size of it....sneeky devil, skulking around and just waiting!!!

    I can't speak to reocurrance...I had 2 primary site cancers, 6 months behind each other. I guess the best I can say is to quote my 5th (!!!) second opinion...."Why would you nullify the fight you have already fought by not fighting just as hard this time?".

    That saw me thru...but, I am sitting at year 3 of Tamoxifen. Stage II breast cancer. You made me sit up when you said your were fine while taking Tamoxifen. Something I need to ask my oncologist...sigh...

    Hugs, Kathi
  • kevindee
    kevindee Member Posts: 72
    sorry to hear this
    shooter i pray it all works out. so march of this yr they found it on the same side. i was 6 or 8 node pos. had the mastectomy in mar 08 found the lump in jan. 5by 5 cm mass of microcalcifacasions(spelling sucks) her2 pos. on arimidex now. my heart just goes out to you shooter. god be with you. you'll get thru this it will be hard but god says if we call on him and ask him in our hearts he'll NEVER LEAVE US NOR FORSAKE US. i think the mental part is almost worst then all of it. well chemo did suck, but i guess i did pretty good compared to some of the others. give her peace lord. love deedee
  • phoenixrising
    phoenixrising Member Posts: 1,508
    I am always so disappointed
    I am always so disappointed when I read that someone took tx, had clean nodes and then the damn thing recurs. I am so sorry you have to go through this. It's hard to have any QOL when you're either worrying or under tx. To go on is such a personal decision but you know there are women here and on other boards that where stage iv and doing well today. I hope that gives you courage to fight on. Kathi's right when she says you've already fought so hard, don't nullify your efforts by giving up. I hope you connect with others in your position and know we are thinking of you and keeping you in our prayers.

    Kathi- Please check with your onc about an AI with bisphosphonate for your osteo. I didn't think you could use an AI when having osteoporosis but apparently its most damaging for those who are normal or have osteopenia. That should help when your finished with the Tamox.
  • shooter1
    shooter1 Member Posts: 5
    KathiM said:

    Cancer stinks!!!
    That's about the size of it....sneeky devil, skulking around and just waiting!!!

    I can't speak to reocurrance...I had 2 primary site cancers, 6 months behind each other. I guess the best I can say is to quote my 5th (!!!) second opinion...."Why would you nullify the fight you have already fought by not fighting just as hard this time?".

    That saw me thru...but, I am sitting at year 3 of Tamoxifen. Stage II breast cancer. You made me sit up when you said your were fine while taking Tamoxifen. Something I need to ask my oncologist...sigh...

    Hugs, Kathi

    Metastatic Breast Cancer
    It is hard to explain. You never have any quality of life. After you finish you 8 week chemo, which is every week. You never quite feel normal, before they start in again. And then to have my tumor marker go up, it is so disappointing.

    They told me that doing a PET scan while I was taking Tamoxifen is not protocol. Basically, if you have a re-occurrence they can't prevent it, and by knowing sooner, you loose quality of life by starting the chemo, radiation, etc. sooner. By catching it sooner, they say makes know difference in life expectancy. I just don't know. How then can some women and men be 7 to 10 years out instead of the normal 5 after re-diagnosis. Then again, if you feel crummy all the time, why find out sooner.

    Thank you for your reply
  • shooter1
    shooter1 Member Posts: 5
    kevindee said:

    sorry to hear this
    shooter i pray it all works out. so march of this yr they found it on the same side. i was 6 or 8 node pos. had the mastectomy in mar 08 found the lump in jan. 5by 5 cm mass of microcalcifacasions(spelling sucks) her2 pos. on arimidex now. my heart just goes out to you shooter. god be with you. you'll get thru this it will be hard but god says if we call on him and ask him in our hearts he'll NEVER LEAVE US NOR FORSAKE US. i think the mental part is almost worst then all of it. well chemo did suck, but i guess i did pretty good compared to some of the others. give her peace lord. love deedee

    Metastatic Breast Cancer
    Thank you for your reply and your words of FAITH. That is what keeps me going, to know that HE is in charge and HE knows what he is doing. I pray every day for strength to continue, or the clear answer on HIS will for my decision to continue or palliative care.

    GOD BLESS YOU!!
  • shooter1
    shooter1 Member Posts: 5

    I am always so disappointed
    I am always so disappointed when I read that someone took tx, had clean nodes and then the damn thing recurs. I am so sorry you have to go through this. It's hard to have any QOL when you're either worrying or under tx. To go on is such a personal decision but you know there are women here and on other boards that where stage iv and doing well today. I hope that gives you courage to fight on. Kathi's right when she says you've already fought so hard, don't nullify your efforts by giving up. I hope you connect with others in your position and know we are thinking of you and keeping you in our prayers.

    Kathi- Please check with your onc about an AI with bisphosphonate for your osteo. I didn't think you could use an AI when having osteoporosis but apparently its most damaging for those who are normal or have osteopenia. That should help when your finished with the Tamox.

    Metastatic Breast Cancer
    Thank you for your reply. Like I said, this is the first time I have ever been on a discussion board. Do you know or have any suggestions of where I could chat with other stage IV survivors. I think that would help to hear how others cope with the ups and downs of this disease.

    Thank you, again.
  • phoenixrising
    phoenixrising Member Posts: 1,508
    shooter1 said:

    Metastatic Breast Cancer
    Thank you for your reply. Like I said, this is the first time I have ever been on a discussion board. Do you know or have any suggestions of where I could chat with other stage IV survivors. I think that would help to hear how others cope with the ups and downs of this disease.

    Thank you, again.

    The only other site that I
    The only other site that I know of that has a forum for stage iv survivors is breastcancer.org. I'm sure there are others, I just don't know about them.

    I have heard the same reasoning about scans as you described. Perhaps I'm not seeing it correctly but I would think that the smaller the tumour the easier it would be to eradicate .... before it too started to spread.

    I wish you well and hope you find your healing.
    love
    jan
  • shooter1
    shooter1 Member Posts: 5

    The only other site that I
    The only other site that I know of that has a forum for stage iv survivors is breastcancer.org. I'm sure there are others, I just don't know about them.

    I have heard the same reasoning about scans as you described. Perhaps I'm not seeing it correctly but I would think that the smaller the tumour the easier it would be to eradicate .... before it too started to spread.

    I wish you well and hope you find your healing.
    love
    jan

    Thank you
    Thank you for your kind words of encouragement and the website. I will check it out.
  • Pelican
    Pelican Member Posts: 1
    Day by Day
    Hi Shooter1. I just came across this site and saw your post. I too am a bc stage 4 and many times have questioned to continue treatment or not. Remembering back to feeling that lump, the awful biopsy, being told it spread to my liver and now, 6 months later, to my lymph nodes has been a constant emotional battle. I'm still handling the constant blood tests, chemo, scans, etc. pretty well while working full time but annoyed I do not have the energy I once had and dealing with the daily pain. Most of all, the constant reminder that I will live like this the rest of my life. My biggest problem I think is trying to find a way to forget I have cancer to begin with so I can have my life back. I hope you are feeling better since your post. I do feel better after a little pity party by the way! LOL Take care and hang in there. Always remember that life is worth everything!