secondary cancer after hodgkin's lymphoma 1992

carrie1968
carrie1968 Member Posts: 1
in Breast Cancer #1

HI my name is Carrie and Ive just recently been diagnoised with Invasive Ductal Carsinoma in my left breast. I had a modified radical masectomy a week ago and am recovering nicely with the exception of the massive head and chest cold. Prior to my results post masectomy I was told I am stage 1 grade 3. I am stressing about chemo as I can't do radiation again as it was used to treat my hodgkin's lymphomia in 1992. I have a pretty good quality of life now and want to continue to have one. I will not put that S**T in my body and live may last days in pain with heart disease etc... I have been doing all kinds of research and will be looking into some of the research studies that show the negative aspects of putting this chemical into a human body. I want to live and not be sick the rest of my life...

I am curious what others think or if they have thought about not using chemo as a way to treat the disease. I am looking to start a conversation about treating the symptoms of my cancer instead of the disease like a bandaid effect. This is a difficult situation for anyone facing cancer and I want to be informed this time.

Any words of wisdom or comments are greatly appreciated.

God Bless

Carrie                                                           

Comments

  • MsGebby
    MsGebby Member Posts: 659
    #2
    Hi Carrie

    I faced a similar situation when I was diagnosed with Stage 2, grade 2 IDC.  I was scared sh*tless of chemo.  My onco wanted to start chemo right away (the tumor was 3cm and I believe that's the reason) .  I told her I wanted to avoid chemo and asked for Oncotype DX testing.  Well am I glad I did.  The results showed that chemo would not have helped my type of cancer.  So I did the 38 radiation treatments and now take Tamoxifen.  

    My advise is to ask about the genetic screening like Oncotype DX.  It doesn't take long to get the results.  

    I will be sending positive thoughts your way and praying you find a happy medium to get through this.

    xoxo

    Mary

  • camul
    camul Member Posts: 2,537
    #3
    Welcome

    and sorry you are on this board, but we are a good group with a lot of us having secondary cancers.  Being grade 3 shows that it is an aggressive cancer and the chemo is really not as harsh now as it even was when I first had it 11 years ago.  Being stage I, you may want to discuss other options with your onco if you are dead set against chemo!   Having a mastectomy may allow you not to have to have radiation again.  I only had chemo with the same diagnosis. 

    Best of luck to you and what you decide, and you are right, any decision is a hard one.

    Carol

  • jnl
    jnl Member Posts: 3,869 Member
    #4
    MsGebby said:

    Hi Carrie

    I faced a similar situation when I was diagnosed with Stage 2, grade 2 IDC.  I was scared sh*tless of chemo.  My onco wanted to start chemo right away (the tumor was 3cm and I believe that's the reason) .  I told her I wanted to avoid chemo and asked for Oncotype DX testing.  Well am I glad I did.  The results showed that chemo would not have helped my type of cancer.  So I did the 38 radiation treatments and now take Tamoxifen.  

    My advise is to ask about the genetic screening like Oncotype DX.  It doesn't take long to get the results.  

    I will be sending positive thoughts your way and praying you find a happy medium to get through this.

    xoxo

    Mary

    Have you had the Oncotype DX

    Have you had the Oncotype DX test?  Like Mary said, if I were you, I would certainly ask for it.  I will be praying for you!

    Leeza

  • cathyp
    cathyp Member Posts: 376 Member
    #5

    Hi Carrie,

    I had Hodgkin's twice, the first time treated with Radiation, recurrence with ABVD. In 2007, I found out I had Invasive Ductal Carcinoma, Stage 1.  Like you, I could not have radiation again, heck that's what caused our breast cancer!  You probably know, the radiation and/or chemo also give us long term survivors many late effects such a host of secondary cancers as well as pulmonary and cardiac issues to name a few. 

    To determine if chemo would help, I had the Oncotype testing and found chemo would prevent a recurrence by 2%.  As I all ready have heart and lung damage, I opted out of chemo. That left Tamoxifen.  Reluctantly I started and encountered gyno problems that led to discovery of ovarian cysts and an elevated CA-125. I stopped the Tamoxifen while that was sorted out.  2 months later I had a TIA, so that took tamoxifen totally off the table. 

    I had my double mastectomy, no reconstruction, in Jan 2008, I remain cancer free with no other treatment.  My onc stresses that good diet and exercise can replace the benefits of tamoxifen.  I did get 3 opinions for Armidex and all said not to start it.

    I hope you get some good numbers for your onco score.  Is you onc familiar with BC after HD?  Are you seeing a long term effect specialist?  I am curious as to why a single mastectomy and not double was done. Did you have the option?  My "good" breast had LCIS found after surgery.  Best of luck with everything.  You are right in that you need to research as most doctors are not familiar with the late effects from Hodgkins and the unique way we should be followed and treated. Good Luck with everything.

    Cathy

  • Pink Rose
    Pink Rose Member Posts: 493
    #6
    camul said:

    Welcome

    and sorry you are on this board, but we are a good group with a lot of us having secondary cancers.  Being grade 3 shows that it is an aggressive cancer and the chemo is really not as harsh now as it even was when I first had it 11 years ago.  Being stage I, you may want to discuss other options with your onco if you are dead set against chemo!   Having a mastectomy may allow you not to have to have radiation again.  I only had chemo with the same diagnosis. 

    Best of luck to you and what you decide, and you are right, any decision is a hard one.

    Carol

    Wishing you good luck in your

    Wishing you good luck in your decision.  Do what is best and right for you!

    Good luck,

    Rose

  • Patti1967
    Patti1967 Member Posts: 186
    #7
    cathyp said:

    Hi Carrie,

    I had Hodgkin's twice, the first time treated with Radiation, recurrence with ABVD. In 2007, I found out I had Invasive Ductal Carcinoma, Stage 1.  Like you, I could not have radiation again, heck that's what caused our breast cancer!  You probably know, the radiation and/or chemo also give us long term survivors many late effects such a host of secondary cancers as well as pulmonary and cardiac issues to name a few. 

    To determine if chemo would help, I had the Oncotype testing and found chemo would prevent a recurrence by 2%.  As I all ready have heart and lung damage, I opted out of chemo. That left Tamoxifen.  Reluctantly I started and encountered gyno problems that led to discovery of ovarian cysts and an elevated CA-125. I stopped the Tamoxifen while that was sorted out.  2 months later I had a TIA, so that took tamoxifen totally off the table. 

    I had my double mastectomy, no reconstruction, in Jan 2008, I remain cancer free with no other treatment.  My onc stresses that good diet and exercise can replace the benefits of tamoxifen.  I did get 3 opinions for Armidex and all said not to start it.

    I hope you get some good numbers for your onco score.  Is you onc familiar with BC after HD?  Are you seeing a long term effect specialist?  I am curious as to why a single mastectomy and not double was done. Did you have the option?  My "good" breast had LCIS found after surgery.  Best of luck with everything.  You are right in that you need to research as most doctors are not familiar with the late effects from Hodgkins and the unique way we should be followed and treated. Good Luck with everything.

    Cathy

    You have to do what is best

    You have to do what is best for you...I had bilateral IDC and had a bilateral mastectomy.  I also had one node that was metastasic.  Chemo seemed to be my best choice, since the node showed that it had entered my bloodstream.  The thought of chemo was very frightening.  It wasn't easy, but I got through it.

    However just three months after finishing chemo, I was just diagnosed with SCC.  They are pretty sure it was able to grow fast and run wild  due to my immune system being down because of the chemo.  I will note that this new cancer popped up less then two weeks after my last round and stayed just a small bump on my chin for weeks.

    I am off to UIC next week to see  where I am at with this new cancer.  Even with all of this, I believe chemo was right for me in treating the IDC.  I also believe fully that it is a personal choice and whatever road you choose I wish you the very, very best!

    Patti

  • Pink Rose
    Pink Rose Member Posts: 493
    #8
    Patti1967 said:

    You have to do what is best

    You have to do what is best for you...I had bilateral IDC and had a bilateral mastectomy.  I also had one node that was metastasic.  Chemo seemed to be my best choice, since the node showed that it had entered my bloodstream.  The thought of chemo was very frightening.  It wasn't easy, but I got through it.

    However just three months after finishing chemo, I was just diagnosed with SCC.  They are pretty sure it was able to grow fast and run wild  due to my immune system being down because of the chemo.  I will note that this new cancer popped up less then two weeks after my last round and stayed just a small bump on my chin for weeks.

    I am off to UIC next week to see  where I am at with this new cancer.  Even with all of this, I believe chemo was right for me in treating the IDC.  I also believe fully that it is a personal choice and whatever road you choose I wish you the very, very best!

    Patti

    Looking for an update from

    Looking for an update from you Carrie.  I hope you will post soon and let us know what you decided.

    Hugs, Rose

  • DianeBC
    DianeBC Member Posts: 3,881 Member
    #9
    cathyp said:

    Hi Carrie,

    I had Hodgkin's twice, the first time treated with Radiation, recurrence with ABVD. In 2007, I found out I had Invasive Ductal Carcinoma, Stage 1.  Like you, I could not have radiation again, heck that's what caused our breast cancer!  You probably know, the radiation and/or chemo also give us long term survivors many late effects such a host of secondary cancers as well as pulmonary and cardiac issues to name a few. 

    To determine if chemo would help, I had the Oncotype testing and found chemo would prevent a recurrence by 2%.  As I all ready have heart and lung damage, I opted out of chemo. That left Tamoxifen.  Reluctantly I started and encountered gyno problems that led to discovery of ovarian cysts and an elevated CA-125. I stopped the Tamoxifen while that was sorted out.  2 months later I had a TIA, so that took tamoxifen totally off the table. 

    I had my double mastectomy, no reconstruction, in Jan 2008, I remain cancer free with no other treatment.  My onc stresses that good diet and exercise can replace the benefits of tamoxifen.  I did get 3 opinions for Armidex and all said not to start it.

    I hope you get some good numbers for your onco score.  Is you onc familiar with BC after HD?  Are you seeing a long term effect specialist?  I am curious as to why a single mastectomy and not double was done. Did you have the option?  My "good" breast had LCIS found after surgery.  Best of luck with everything.  You are right in that you need to research as most doctors are not familiar with the late effects from Hodgkins and the unique way we should be followed and treated. Good Luck with everything.

    Cathy

    The best of luck to you

    The best of luck to you Carrie!  Just wish there were more I could do for you.

    Hugs, Diane

  • annemwood
    annemwood Member Posts: 4
    edited February 2017 #10
    Hello Carrie, are you still on line?

    I would love to get an update from you.  I have a very similar story, even with matching dates.

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