Third time

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katduu
katduu Member Posts: 7
edited June 2014 in Second or Third Breast Cancer
Third time
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  • katduu
    katduu Member Posts: 7
    edited June 2008

    Hi, I'm new to this post, but from reading them they sound like a great group people use them.  I was first diognoised with breast cancer in 1993, that had spread to my lymph nodes.  I took chemo and radiation for a year and was cancer free 11 years.  Than it came back in my bones and liver.  I took an expermental drug.  This durg took away the bone cancer and was shrinking it in the liver.  In 2007 it came back in my liver and abdomin.  I have been on xeloda for over a year and my tumor count has been going down.  I worry about when this drug will stop working.  According to studies I've read it only works 2-4 months, so I guess I'm doing good.  The doctor says there are 2 more drugs we can try after this, but their averager is also 2-4 months.  Than I guess I just die.  I sometimes wonder about the quality of my life and if I should continue living with the side effects, that I understand I will have the rest of my life if I continue with these drugs.   Any good advice?  Kathy 

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  • Gitane
    Gitane Member Posts: 1,885
    edited June 2008

    Hi Kathy, No advice. I am at a loss there. Nobody could tell you what to do could they? These decisions must be yours. It's hard to know what to say. I think often about what I will do when the time comes for me to make the decisions you are making. Seems like the only thing any of us can do is take each day as it comes. At this time you don't know how long each drug will work for you. If your doctor thinks there is still a good chance it is working you do not need to stop treatment unless you feel the effects are more than you want to live with. But you know all this. I'm babbling. I wish you courage and peace and send you lots of caring and love. The women who come here are very good people, I know others will be along soon.



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  • katduu
    katduu Member Posts: 7
    edited June 2008

    Thank-you Gitane.  It actually made me feel better just to share my thoughts.  I guess I've decided that the side effects could be worse.  I think I should talk to the doctor about something for depression.  Becuase I'm having allot of dark days.  I also need to try not to feel sorry for myself.  Thank you again.  Kathy 

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  • LizM
    LizM Member Posts: 963
    edited June 2008

    Hi Kathy,

    So sorry you are going through this.  No one can answer those questions for you and I am not going through what you are going through as I was just recently diagnosed (2005) with stage II node positive.  I do know that there is a possibility that I will have to go through it again in the future.  With all the new drugs for breast cancer that may be coming out in the future, there is always the possibility that there will be more drugs for you to take.  Who knows we may even find a cure.  I just walked 40 miles in the Avon Foundation Breast Cancer walk in DC.  They raised over 7 million dollars for breast cancer treatment and research.  The Avon Foundation handed over a million dollar check to Johns Hopkins to fund research for new treatments.  Hang in there.  There is always Hope.

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  • ICanDoThis
    ICanDoThis Member Posts: 1,473
    edited June 2008

    We have a very active recurrence and mets board: 

    http://community.breastcancer.org/topic/8

    These ladies rock - they are on top of everything, and are very supportive of each other.

    Hope this helps

    Sue

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  • katduu
    katduu Member Posts: 7
    edited June 2008

    Good for you lizM!  I know treatment has sure changed in the last 14 years when I first had cancer.  You are right they are finding new treatments daily, (thanks to people like you) so we all need to just keep our hopes up.  I'm glad I found these boards.  I live in rural Minnesota, so I don't get to talk much with others who have bc.

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  • nancyluvspink
    nancyluvspink Member Posts: 102
    edited July 2008

    Hi Kathy,

    I hope you are doing o.k.  I have had breast cancer twice 2000 age 35 and 2006 age 41.  I now have had a total hysteretomy and on 6/27/08, a bilateral mastectomy.  I think I have done all I can to limit my chances of another recurrance.  If and when it returns, I will be at a place I cannot imagine.  I really dont know what to say except that I hope the meds keep working for you.  I take Effexor to help with depression and xanax to help with my nerves.  I dont know how insane I would be without these drugs.  I wish you the best.  Continue to be strong and try and make the best of every single day. 

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  • rhuyck
    rhuyck Member Posts: 5
    edited November 2008

    I am hoping to get advice. Since you had a total mastectomy after prior cancer, did your surgeon have any problems with the radiated breast.  My surgeon told me he had to create an extremely tight muscles for the blood flow.  I am started to wonder if he knew what he was doing.  See below   

    I need help.

    I had my mastectomy 3 weeks ago.  I had a lumpectomy 19 years ago with 6 sixs of radiation.  I had no chemo.  I got the 2mm cancer again in the same spot as before so I had to have a mastectomy.  My surgeon did a very tight cut because he said because of the radiation and the blood flow.  My chest is as hard as a rock.  I constantly feel tightness in the scar area.  I wonder if the surgeon didn't do the right job as he told me today that I will feel that tightness for at least a year.  Then I could consider the flap method of reconstructive surgery which would have the breast area feel less tight. He told me I am to go to physical therapy as long as insurance pays for it.  Has anyone out there experience problems with a mastectomy after a radiated breast? I Just don't know how I will be able to stand this strangle hold on my chest for so long. 

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  • TenderIsOurMight
    TenderIsOurMight Member Posts: 4,493
    edited November 2008

    Bumping this up for rhuyck who asks " Has anyone out there experience problems with a mastectomy after a radiated breast?"
     
    Rhuyck, I'm taking it your surgeon made sure your pectoralis muscles, your fibrous tissue and lastly your skin were pulled together at their edges very closely, or tightly, to aid in blood flow/healing across the edges involved. Radiation damages blood supply to tissue, so by reducing the gap between sewn together edges, there may be less blood supply needed over the surface area than if your surgeon re-approximated the tissue edges more loosely. Just my thoughts on this.
     
    It sounds well thought out; always great to minimize incision size and subsequent skin scar. Now that you're three weeks out, he will give you some instructions on how to regain your arm/shoulder function. It will probably include "climbing the wall" where you stand at a door frame and gently run your fingers up the side of the frame, each day going a little higher. This should be done, so you don't lock up your arm and shoulder from lack of stretch.
     
    I should think the tight feeling of the chest should gradually lesson, as the area heals. It must be uncomfortable for sure. Physical therapy sounds like a great idea, since your in a rather unique situation. Some physical therapists, with permission, work to loosen the skin scar from the fibrous tissue below as a way to lessen tightness.
     
    Glad you found this site and hope you'll continue to post. Good luck in your therapy, and may you have relief of discomfort soon.
     
    My best to you,
    Tender 
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  • TenderIsOurMight
    TenderIsOurMight Member Posts: 4,493
    edited November 2008

    Dear Katddu (Kathy),
     
    Just a note to say I hope you're doing o.k.. It's been a few months since you posted, and I hope the Xeloda is working well. 
     
    Best wishes to you,
    Tender 
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  • Lynne3times
    Lynne3times Member Posts: 53
    edited January 2009

    Hi Rhuyck:

    I hope all is well with you, I am particularly interested in speaking with you as I live in Schenectady, and after having BC for the 3rd time, will be having a BLM, Jan 27th. I too have had prior radiation on both breasts, one 18 years ago and one 5 years ago. My PS is going to try the implants first, w/our backup plan being the lat. I am curious what PS you had, I am going to Rockmore at Albany PS group. Take care and please post if you can. Lynne

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  • 3rdtimer
    3rdtimer Member Posts: 11
    edited January 2009

    Hi Rhuyck and Lynne,

    I too have had BC for the third time. I had a BLM on November 12th with immediate DIEP reconstruction. I have had radiation on both breasts as well. I decided to forego implants and did the DIEP. I didn't have alot of tummy fat so my breasts are smaller than they were but I am okay with that. My PS did say that my radiated breasts skin was different than normal skin but everything seems to be okay. Good luck with your upcoming surgery.

    Lucy

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  • Lynne3times
    Lynne3times Member Posts: 53
    edited January 2009

    Hi Lucy,

    I am so sorry to hear that you are part of the 3 timers club. Just how many times can a person deal with this crap? Glad that you could do the DIEP recon. I wish I had that option, my PS said that he would only be moving skin and there would be no breast. We have wide hips and flat stomachs in my family. Who would have thought it would one day haunt me.

    I just met with a really wonderful young woman from Gilda's club who had BLM and recon via expanders last year. She had one breast w/rads the other without. She was kind enough to show me her results and they looked really good. There was a very slight color difference, which rads does, but no worries there, I have a matching pair! and she said that her rad breast has not "dropped" like her norad breast but honestly, to look at her you would never know. I really hope this works and I can avoid the infections because I am not too thrilled about the lat flap procedure that my PS wants to do if it fails. The big day is this Tuesday 1/27. So far I am doing ok.

    I hope that Rhuyck is doing ok because she never posted back on this thread. Anytime you want to chat please feel free to send me a private message. I am here. Thank you so much for posting. Lynne

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  • 3rdtimer
    3rdtimer Member Posts: 11
    edited January 2009

    Hi Lynne,

         Its hard to believe that we are dealing with cancer for the third time!! You would think once in a lifetime is too many. I have not made it past the five year mark yet!! Hopefully with the BLM, I will make it past my next five years.

         That is cool that you actually got to see someone who had a BLM in person. I have only seen pictures and to be honest, they scared me!! My sister had a single mastectomy years ago and I remember seeing her chest and the shock I felt. I decided I did not want to ever see myself that way so I opted for immediate reconstruction. That was scarey enough but I'm getting use to how my breasts look and hopefully after the tattooing, they will look better.

         Good luck on your surgery. I'm sure you will be fine and your new breasts will be great. I will try sending you a private message. Keep in touch!! Its great to know I'm not alone and can talk to someone who has actually been through it. My family is wonderful but they don't understand the deep down fear which I hide from them because of course, I am the strong one that holds the family together.... isn't that what Mothers are for?? :)

    Thanks for responding.

    Lucy

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