Post Hodgkins Lymphoma now diagnosed with Breast cancer

This is my first time posting, I have recently been diagnosed with breast cancer as a direct result of mantle radiation I had in 1980 at the age of 19 for stage I Hodgkins lymphoma. My breast cancer is stage I no lymph involvment and is very slow growing. I was told it had probably been there 10 years before it was big enough to even be seen on mammography. Most normal treatment in the case of breast cancer in hodgkins patients is bilateral mastectomy but in my case I also have coronary artery disease with 3 stents which also was a direct result of the mantle radiation. I will be on plavix for the rest of my life, I was told mastectomy would be a big surgery for me with the heart issues and that lumpectomy with radiation would be very effective for my early stage breast cancer. I am defineatly not a candidate for whole breast radiation but did qualify for an accelerated 1 week therapy that is very pin pointed and will totally spare my heart and lungs. It is the savi device,
Since I am at increased risk for mastectomy and lumpectomy with radiation for early stage breast cancer has the same outcome I had lumpectomy and now have the savi placed, I will be doing radiation next wwek for 5 days total

I was told there are two risks ,,,,infection of the device and possible fibrosis of a small part of the breast tissue that will receive additional radiation due to the overlap of the previous mantle field. The doctors are all very optimistic that this will work for me. There are two previous HD patients who had this same type of treatment 8 and 6 yrs ago. They both do have some fibrosis of the skin but nothing that makes them regret their decision, I was wondering if there is anyone else out there that has had radiation over the top of previous radiation for HD and how that went, There aren't many of us as most chose mastectomy for breast cancer.
Thanks
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Comments

  • cathyp
    cathyp Member Posts: 376 Member
    Felow HL and BC patient
    I too had HD in 1989 and 1994. Invasive Ductual Carcinoma in 2007. I was able to proceed with a double mastectomy. No radiation, chemo or hormone therapy (gyno and TIA issues) for the Breast Cancer.

    It must make you feel relieved that your doctors have treated similiar patients. Have you thought about getting a second opinion though? I had 3 opinions, local, MSKCC, and Fox Chase. Do you have a Long Term Follow up clinic near you? I see a specialist at Memorial Sloan Kettering Cancer Center. The doctor is a Long Term Effect specialist, seeing Hodgkins and Leukemia patients decades after treatment. He works with Cardiologist who only research and work on radiated hearts. Their BC docs have seen many HL patients with hearst disease and BC. There are other clinics throughout the country. Also, there is a fantastic website that has resources for you. It is a mailing list(email) for long term survivors. Once you join, you can search the archives for patients who went through you circumstances. You can ask questions and fellow Hodgkin's survivors will chime in. I can't stress how the mentioned website has aided me as I get hit with new side effects from treatment. (We are closely monitoring my heart among other things).

    I'll private message you with the website name.
    All the best to you,
    Cathy
  • threestrikes01
    threestrikes01 Member Posts: 3
    cathyp said:

    Felow HL and BC patient
    I too had HD in 1989 and 1994. Invasive Ductual Carcinoma in 2007. I was able to proceed with a double mastectomy. No radiation, chemo or hormone therapy (gyno and TIA issues) for the Breast Cancer.

    It must make you feel relieved that your doctors have treated similiar patients. Have you thought about getting a second opinion though? I had 3 opinions, local, MSKCC, and Fox Chase. Do you have a Long Term Follow up clinic near you? I see a specialist at Memorial Sloan Kettering Cancer Center. The doctor is a Long Term Effect specialist, seeing Hodgkins and Leukemia patients decades after treatment. He works with Cardiologist who only research and work on radiated hearts. Their BC docs have seen many HL patients with hearst disease and BC. There are other clinics throughout the country. Also, there is a fantastic website that has resources for you. It is a mailing list(email) for long term survivors. Once you join, you can search the archives for patients who went through you circumstances. You can ask questions and fellow Hodgkin's survivors will chime in. I can't stress how the mentioned website has aided me as I get hit with new side effects from treatment. (We are closely monitoring my heart among other things).

    I'll private message you with the website name.
    All the best to you,
    Cathy

    Thank you for your reply. I
    Thank you for your reply. I will be looking for the web site name. That is a good idea about finding a late effects specialist. Currently I am being seen by a Surgeon that is a part of a Comprehensive Care Center for breast cancer in our state. The breast surgeon and radiation oncologist are both out of that center. It is one of a few such breast facililities in the nation and I am very lucky to be able to be treated there. My medical oncologist is not a part of that center but I have been his patient for hodgkins disease since 1996 when I recurred the second time and the tumor was the size of a soccer ball. He is almost like family and I trust his opinion very much. My cardiologist is one of the best in the state and she is at the same campus as the comprehensive breast care center. She has also been with me for along time and I trust her opinion as well. All these docs are working together as a team. I do agree though. It never hurts to get another opinion. Sometimes it is good to hear from people that do not know your case. Fresh eyes. I will look to find a comprehensive cancer care center for followi up. I live in Indianapolis. I know that Chicago has one The University of Chicago Medicine.
  • cathyp
    cathyp Member Posts: 376 Member

    Thank you for your reply. I
    Thank you for your reply. I will be looking for the web site name. That is a good idea about finding a late effects specialist. Currently I am being seen by a Surgeon that is a part of a Comprehensive Care Center for breast cancer in our state. The breast surgeon and radiation oncologist are both out of that center. It is one of a few such breast facililities in the nation and I am very lucky to be able to be treated there. My medical oncologist is not a part of that center but I have been his patient for hodgkins disease since 1996 when I recurred the second time and the tumor was the size of a soccer ball. He is almost like family and I trust his opinion very much. My cardiologist is one of the best in the state and she is at the same campus as the comprehensive breast care center. She has also been with me for along time and I trust her opinion as well. All these docs are working together as a team. I do agree though. It never hurts to get another opinion. Sometimes it is good to hear from people that do not know your case. Fresh eyes. I will look to find a comprehensive cancer care center for followi up. I live in Indianapolis. I know that Chicago has one The University of Chicago Medicine.

    It is comforting for me to
    It is comforting for me to hear of your team's expertise! We are a rare bird that needs special handling for everything!
    If you sign up for the website, you normally get a welcome email and it will provide useful links such as a listing of Late Effects Clinics. Here is the link, I hope it is ok to post this:
    http://tinyurl.com/cdn2omw

    Take Care and good luck,
    Cathy
  • sslemoine
    sslemoine Member Posts: 2
    cathyp said:

    Felow HL and BC patient
    I too had HD in 1989 and 1994. Invasive Ductual Carcinoma in 2007. I was able to proceed with a double mastectomy. No radiation, chemo or hormone therapy (gyno and TIA issues) for the Breast Cancer.

    It must make you feel relieved that your doctors have treated similiar patients. Have you thought about getting a second opinion though? I had 3 opinions, local, MSKCC, and Fox Chase. Do you have a Long Term Follow up clinic near you? I see a specialist at Memorial Sloan Kettering Cancer Center. The doctor is a Long Term Effect specialist, seeing Hodgkins and Leukemia patients decades after treatment. He works with Cardiologist who only research and work on radiated hearts. Their BC docs have seen many HL patients with hearst disease and BC. There are other clinics throughout the country. Also, there is a fantastic website that has resources for you. It is a mailing list(email) for long term survivors. Once you join, you can search the archives for patients who went through you circumstances. You can ask questions and fellow Hodgkin's survivors will chime in. I can't stress how the mentioned website has aided me as I get hit with new side effects from treatment. (We are closely monitoring my heart among other things).

    I'll private message you with the website name.
    All the best to you,
    Cathy

    Fellow HL 30 years ago
    I also had HD in 1982 and was treated with radiation therapy only. I have frequent screenings for the increased breast cancer risk, but had no idea the risk could be as high as 40-50% based upon age at treatment and extensive RT. I have my 30 year follow-up visit this week and have a list of questions based upon research regarding late effects of RT. I am very interested in finding out if there are any late effects specialists in my area - Columbus, OH. I am especially interested in the cardiac effects as I have had some odd symptoms - rapid resting heart rate, dizziness when going from reclining to standing, fatigue, etc. Any additional websites or resources you can recommend would be greatly appreciated! Also, any good info you have received from your specialists that you could pass on would be helpful for me to bring up at my follow-up appointment tomorrow.
    Thanks!!
  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,765 Member
    cathyp said:

    Felow HL and BC patient
    I too had HD in 1989 and 1994. Invasive Ductual Carcinoma in 2007. I was able to proceed with a double mastectomy. No radiation, chemo or hormone therapy (gyno and TIA issues) for the Breast Cancer.

    It must make you feel relieved that your doctors have treated similiar patients. Have you thought about getting a second opinion though? I had 3 opinions, local, MSKCC, and Fox Chase. Do you have a Long Term Follow up clinic near you? I see a specialist at Memorial Sloan Kettering Cancer Center. The doctor is a Long Term Effect specialist, seeing Hodgkins and Leukemia patients decades after treatment. He works with Cardiologist who only research and work on radiated hearts. Their BC docs have seen many HL patients with hearst disease and BC. There are other clinics throughout the country. Also, there is a fantastic website that has resources for you. It is a mailing list(email) for long term survivors. Once you join, you can search the archives for patients who went through you circumstances. You can ask questions and fellow Hodgkin's survivors will chime in. I can't stress how the mentioned website has aided me as I get hit with new side effects from treatment. (We are closely monitoring my heart among other things).

    I'll private message you with the website name.
    All the best to you,
    Cathy

    Sent from some special place...
    Cathy,

    I have read a lot of boards over the years at sites other than this one, but I cannot recall a newcomer's just-stated need being as precisely and specifically answered as in this response of yours.

    To my manner of thinking, it cannot be a coincidence. Geeze...I am at a loss.

    max
  • cathyp
    cathyp Member Posts: 376 Member
    sslemoine said:

    Fellow HL 30 years ago
    I also had HD in 1982 and was treated with radiation therapy only. I have frequent screenings for the increased breast cancer risk, but had no idea the risk could be as high as 40-50% based upon age at treatment and extensive RT. I have my 30 year follow-up visit this week and have a list of questions based upon research regarding late effects of RT. I am very interested in finding out if there are any late effects specialists in my area - Columbus, OH. I am especially interested in the cardiac effects as I have had some odd symptoms - rapid resting heart rate, dizziness when going from reclining to standing, fatigue, etc. Any additional websites or resources you can recommend would be greatly appreciated! Also, any good info you have received from your specialists that you could pass on would be helpful for me to bring up at my follow-up appointment tomorrow.
    Thanks!!

    Sorry..was on vacation
    wondering how your appointment went. I was away for a week so missed your posting.

    sslemoine, one of the first things I learned at my adult followup doc was all of us HL survivors treated with radiation have rapid resting heart rates. Mine is usually around 100. I have gotten used to this but my PCP can't understand how I can live with it. I do know if it get worse, meds can help. Fatigue is another universal complaint of fellow long term survivors. The dizziness may be cardiac related. Really, a specialist that follows survivors is your best bet to offer you a comprhensive plan to manage and be proactive for all of the possible effects from our treaments. I do know of HL survivors going to the Cleveland Clinic for cardiac sugery as a surgeon there is well versed in radiation damage. Hopefully you can find a specialist close to you.
    Are you alternating mammos with breast mri's, one every 6 mos? I believe that is this standard of care for us.
    Here is a Survivor Guideline book. Some survivors present this book to their pcp's.
    http://www.survivorshipguidelines.org/
    It is written for pediatric cancer survivors but it applies to me too. I was dx'd at age 29.

    Hope you got some answers at you appointment!
  • cathyp
    cathyp Member Posts: 376 Member

    Sent from some special place...
    Cathy,

    I have read a lot of boards over the years at sites other than this one, but I cannot recall a newcomer's just-stated need being as precisely and specifically answered as in this response of yours.

    To my manner of thinking, it cannot be a coincidence. Geeze...I am at a loss.

    max

    Not sure
    Hi Max,

    I've read your comment a few times but I can't figure out the context of it!!! May be it getting late but I can't figure it out;)
    Thanks,
    Cathy
  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,765 Member
    cathyp said:

    Not sure
    Hi Max,

    I've read your comment a few times but I can't figure out the context of it!!! May be it getting late but I can't figure it out;)
    Thanks,
    Cathy

    Not Sure
    I could answer personally, but just let it pass. Believe me, it was strongly complimentary in nature and intent.

    max
  • cathyp
    cathyp Member Posts: 376 Member

    Not Sure
    I could answer personally, but just let it pass. Believe me, it was strongly complimentary in nature and intent.

    max

    oh, thanks!!! that was the
    oh, thanks!!! that was the way I was leaning. whew...
  • Bermudagirl
    Bermudagirl Member Posts: 114
    cathyp said:

    oh, thanks!!! that was the
    oh, thanks!!! that was the way I was leaning. whew...

    10 years out from Hodgkins disease treatment
    Hello everyone,

    I stumbled on this site and thought I would chime in. I had chemo and radiation 1o years ago for Stage II Hodgkins disease. I'm fine now, but I have an MRI and mammogram alternating every 6 months. Of course when you go looking for something you'll find it, and my last MRI showed "benign papillomas" which were surgically removed this past April. I am not naive and am mentally preparing myself for a breast cancer down the road, but am trying not to worry too much about it.

    I'm knee deep in supporting my boyfriend who was just diagnosed with Stage III esophogeal cancer. The treatment and surgery that he is going through makes my Hodgkins look like childs play.

    I just saw my oncologist this week, and got a clean bill of health. While I no longer get PET or CT scans, all my blood work is perfect, and I just hope for the best.

    I'm now 53, and while I know that cardiac issues can be a concern, I'm fortunate that I have not had any issues with that yet.


    Sandy
  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,765 Member

    10 years out from Hodgkins disease treatment
    Hello everyone,

    I stumbled on this site and thought I would chime in. I had chemo and radiation 1o years ago for Stage II Hodgkins disease. I'm fine now, but I have an MRI and mammogram alternating every 6 months. Of course when you go looking for something you'll find it, and my last MRI showed "benign papillomas" which were surgically removed this past April. I am not naive and am mentally preparing myself for a breast cancer down the road, but am trying not to worry too much about it.

    I'm knee deep in supporting my boyfriend who was just diagnosed with Stage III esophogeal cancer. The treatment and surgery that he is going through makes my Hodgkins look like childs play.

    I just saw my oncologist this week, and got a clean bill of health. While I no longer get PET or CT scans, all my blood work is perfect, and I just hope for the best.

    I'm now 53, and while I know that cardiac issues can be a concern, I'm fortunate that I have not had any issues with that yet.


    Sandy

    Boyfriend

    Bermudagirl,

    I replied to something you had written elsewhere, so look for that as well, if you will.

    Most organ cancers require surgery, and that, in most cases, becomes ugly. A good friend, after having nose cancer and having most of his nose cut off, 5 years later got bladder cancer. He had his bladder cut out, when on a bag, and was in ICU for 90 days, most of that time on chemo. He could not remember any of that 90 days later ! Her was clean and became an excercise fan, waiking miles a day. He was my main coach during my six months of chemo, and called me often. I could barely talk due to lung toxicity, but he was an angel.

    After many years clean from bladder, he got lymphoma, and died very shortly therafter.

    This is a trial, but for a reason. Many friends (mostly prostate) have died after 10 or 12 years of fighting, but I tell them to cherish and be thankful for all of those years !

    My friend Gary will soon die from prostate, late stage IV. I have watched so many die, close up. I give thanks daily for my remission.

    Bless your friend, and be there for him. May he have 40 more years !

    max

    .
  • ScottHonolulu
    ScottHonolulu Member Posts: 1
    cathyp said:

    Felow HL and BC patient
    I too had HD in 1989 and 1994. Invasive Ductual Carcinoma in 2007. I was able to proceed with a double mastectomy. No radiation, chemo or hormone therapy (gyno and TIA issues) for the Breast Cancer.

    It must make you feel relieved that your doctors have treated similiar patients. Have you thought about getting a second opinion though? I had 3 opinions, local, MSKCC, and Fox Chase. Do you have a Long Term Follow up clinic near you? I see a specialist at Memorial Sloan Kettering Cancer Center. The doctor is a Long Term Effect specialist, seeing Hodgkins and Leukemia patients decades after treatment. He works with Cardiologist who only research and work on radiated hearts. Their BC docs have seen many HL patients with hearst disease and BC. There are other clinics throughout the country. Also, there is a fantastic website that has resources for you. It is a mailing list(email) for long term survivors. Once you join, you can search the archives for patients who went through you circumstances. You can ask questions and fellow Hodgkin's survivors will chime in. I can't stress how the mentioned website has aided me as I get hit with new side effects from treatment. (We are closely monitoring my heart among other things).

    I'll private message you with the website name.
    All the best to you,
    Cathy

    Wife had HD ... now BC
    Hi Cathy,

    My wife had HD in the late 80's (at 19/20 years old)...had radiation...we just got news yesterday she now has BC (46). She also had Graves Disease about 10 years ago...they had to radiate thyroid then. We were not aware of increased risk of BC from the old radiation. So this took us by surprise. We don't know what stage or anything yet. We will find out more next Tues.

    Do you have any advise for us? Thanks for being open on this message board...I'm not sure if Karen will post or not.

    Aloha,
    Scott
  • cathyp
    cathyp Member Posts: 376 Member

    Wife had HD ... now BC
    Hi Cathy,

    My wife had HD in the late 80's (at 19/20 years old)...had radiation...we just got news yesterday she now has BC (46). She also had Graves Disease about 10 years ago...they had to radiate thyroid then. We were not aware of increased risk of BC from the old radiation. So this took us by surprise. We don't know what stage or anything yet. We will find out more next Tues.

    Do you have any advise for us? Thanks for being open on this message board...I'm not sure if Karen will post or not.

    Aloha,
    Scott

    Sorry Scott
    Very sorry to hear of your wife's dx. Also, it is unfortunate that you were unaware of the potential long term effects from our HD treatments.
    A BC dx for a Hodgkin's survivor is complicated due to the fact that our treatment options may be limited or need to be tailored because of our past Hodgkin's treaments. Therefore, it is best to consult with a LT followup specialist or oncologist who is aware of this.

    Once this present hurdle is dealt with for your wife, I would suggest you obtain a copy of the Pediatric Cancer Survivor Guidelines for Long Term Follow-up Care. It can aid your wife's family doctor in what tests need to be done to stay on top of potential LT Effects. Right now, that would be too much information to deal with.

    I knew before my BC dx that my only option would be a double mastectomy. No radiation as I had mantle radiation for the HD. I do know of HD survivors that had lumpectomies and some with targeted radiation therapy. I am aware of 2 survivors choosing lumpectomies that are undergoing mastectomies for a recurrence. Of course I do not know the statistics that the leading long term followup doctors have regarding our treatments choices and outcomes. My mx was Jan 2008 and I remain BC free, no other treatment for stage 1 Invasive Ductal Carcinoma (I opted out of chemo because benefit would have only been 1-2%).

    Right now, my advice to you is to find someone who is keenly aware of our past dx's and tx's and is knowledegable of what that means for us survivors. If you need specifics, I could help you out by providing links for specialist and guidelines.

    All the best to you and your wife,
    Cathy
  • Oliverhog
    Oliverhog Member Posts: 1
    cathyp said:

    Sorry Scott
    Very sorry to hear of your wife's dx. Also, it is unfortunate that you were unaware of the potential long term effects from our HD treatments.
    A BC dx for a Hodgkin's survivor is complicated due to the fact that our treatment options may be limited or need to be tailored because of our past Hodgkin's treaments. Therefore, it is best to consult with a LT followup specialist or oncologist who is aware of this.

    Once this present hurdle is dealt with for your wife, I would suggest you obtain a copy of the Pediatric Cancer Survivor Guidelines for Long Term Follow-up Care. It can aid your wife's family doctor in what tests need to be done to stay on top of potential LT Effects. Right now, that would be too much information to deal with.

    I knew before my BC dx that my only option would be a double mastectomy. No radiation as I had mantle radiation for the HD. I do know of HD survivors that had lumpectomies and some with targeted radiation therapy. I am aware of 2 survivors choosing lumpectomies that are undergoing mastectomies for a recurrence. Of course I do not know the statistics that the leading long term followup doctors have regarding our treatments choices and outcomes. My mx was Jan 2008 and I remain BC free, no other treatment for stage 1 Invasive Ductal Carcinoma (I opted out of chemo because benefit would have only been 1-2%).

    Right now, my advice to you is to find someone who is keenly aware of our past dx's and tx's and is knowledegable of what that means for us survivors. If you need specifics, I could help you out by providing links for specialist and guidelines.

    All the best to you and your wife,
    Cathy

    CathyP
    Cathy, I've seen you on here in a few places and I find it comforting. I feel a big whine coming on. I had mantle radiation for IIA Hodgkin's in 1985. Was treated with chemo in 1987 for 8 months for recurrence. Had already started developing pulmonary fibrosis. Over the years my lung capacity has decreased to 37% of predicted normal. I am hypothyroid and lost my fertility when I was 26. I was diagnosed with invasive ductal carcinoma in my right breast on 10/5/12. At first the surgeon was talking about giving me two or three months of chemo to shrink the tumor. I balked at getting more chemo. He then thought double mastectomy under local with sedation because of my lung disease. Then the doctors suggested I go to University of Chicago. Here's my dilemma. At this point, I'm not sure if I need chemo. I think possibly I will because, though the cancer is estrogen receptive positive, apparently there was a lot of mitotic activity which means they call it aggressive. At this point, no one believes there's lymph node involvement and all other scans have come back clean.

    I had asked about whether or not the surgeon could save my nipples when they do the mastectomy. They took some measurements I guess because they're thinking of that. I talked to the surgeon after she had brought my case before the panel to figure out the best way to handle my complicated case and I thought she said I wasn't a candidate for reconstruction even with implants. From everything I've read and seen I don't understand why I wouldn't be a candidate for implants. I'm small busted, probably between an A and B and obviously wouldn't be looking to be a double D. I'm not sure why I asking you this, but I guess I feel the need for some emotional support from someone who's been there, done that. And, I am feeling kind of sorry for myself. I too have a relatively high heart rate, in the upper 80s or lower 90s when I wake up, but otherwise, usually around 108 or 112. All the doctors wonder why as well. I'm scheduled for an echocardiogram before my surgery, which hasn't been scheduled yet. I'm nervous.

    In your conversations with people on this site, have you ever encountered anyone who's had radiation to the chest for Hodgkin's and been denied the opportunity for implant reconstruction after mastectomy? Or am I possibly a special case because of the fibrosis? Though I can't see how having implants versus real breasts makes a difference.
  • cathyp
    cathyp Member Posts: 376 Member
    Oliverhog said:

    CathyP
    Cathy, I've seen you on here in a few places and I find it comforting. I feel a big whine coming on. I had mantle radiation for IIA Hodgkin's in 1985. Was treated with chemo in 1987 for 8 months for recurrence. Had already started developing pulmonary fibrosis. Over the years my lung capacity has decreased to 37% of predicted normal. I am hypothyroid and lost my fertility when I was 26. I was diagnosed with invasive ductal carcinoma in my right breast on 10/5/12. At first the surgeon was talking about giving me two or three months of chemo to shrink the tumor. I balked at getting more chemo. He then thought double mastectomy under local with sedation because of my lung disease. Then the doctors suggested I go to University of Chicago. Here's my dilemma. At this point, I'm not sure if I need chemo. I think possibly I will because, though the cancer is estrogen receptive positive, apparently there was a lot of mitotic activity which means they call it aggressive. At this point, no one believes there's lymph node involvement and all other scans have come back clean.

    I had asked about whether or not the surgeon could save my nipples when they do the mastectomy. They took some measurements I guess because they're thinking of that. I talked to the surgeon after she had brought my case before the panel to figure out the best way to handle my complicated case and I thought she said I wasn't a candidate for reconstruction even with implants. From everything I've read and seen I don't understand why I wouldn't be a candidate for implants. I'm small busted, probably between an A and B and obviously wouldn't be looking to be a double D. I'm not sure why I asking you this, but I guess I feel the need for some emotional support from someone who's been there, done that. And, I am feeling kind of sorry for myself. I too have a relatively high heart rate, in the upper 80s or lower 90s when I wake up, but otherwise, usually around 108 or 112. All the doctors wonder why as well. I'm scheduled for an echocardiogram before my surgery, which hasn't been scheduled yet. I'm nervous.

    In your conversations with people on this site, have you ever encountered anyone who's had radiation to the chest for Hodgkin's and been denied the opportunity for implant reconstruction after mastectomy? Or am I possibly a special case because of the fibrosis? Though I can't see how having implants versus real breasts makes a difference.

    Oh please rant away, that's
    Oh please rant away, that's why we are here. We get it, we know exactly where you are coming from, us other Long Term Survivors.
    So when I was dx with IDC, all my doctors strongly urged against reconstruction. They wanted me to avoid another major surgery. Also, when the double MX was done, they were not sure what the final patholgy would be. If I required chemo, they wanted to start right away. If I had recon and complications ensued, chemo would be delayed. Because our chest received such high doses of rads, they had no way of predicting how my mx sites would heal. We even consider hyperbaric oxygen treatments before surgery. I'm sure the docs were being extremely cautious, but I went along with the recommendations with no hesitations.
    Regarding chemo, did they send your tumor out for oncotype testing? My score came back low indicating chemo would reduce my chance of recurrence by 2%, I declined chemo.
    Ahh, the heart rate. Sitting watching tv, I may get it down to 90. It rises like yours doing normal activities. This is true of all Hodgkin's patients treated long ago with rads. My PCP of 23 years insisted it was anxiety. It wasn't until I met my specialist that he explained the where and how of the HHR and even called my NEW PCP to explain it. Have you been getting annual echo's or stress echos as part of your followup? I have for the last 23 years and I have valve problems among other cardiac issues from the rads and chemo.
    Our care is so complicated as LT Survivors. You probably have read the importance I put on having a LT specialist on your team or at the very least a PCP willing to be versed in Survivorship Guidelines. I am so sorry that you have encountered another "gift" of our treatments. What really helped me was finding my specialist and joining the ACOR website to converse with survivors just like you and me that have "been there done that". I do remember some ACOR list member having recon successfully. It may be benficial to hear their stories. We really need to be informed facing our new challenges.
    Please vent away and ask anything that comes to mind. I'd be happy to try to help.
    Cathy
  • 40yearsandcounting
    40yearsandcounting Member Posts: 18 Member
    cathyp said:

    Oh please rant away, that's
    Oh please rant away, that's why we are here. We get it, we know exactly where you are coming from, us other Long Term Survivors.
    So when I was dx with IDC, all my doctors strongly urged against reconstruction. They wanted me to avoid another major surgery. Also, when the double MX was done, they were not sure what the final patholgy would be. If I required chemo, they wanted to start right away. If I had recon and complications ensued, chemo would be delayed. Because our chest received such high doses of rads, they had no way of predicting how my mx sites would heal. We even consider hyperbaric oxygen treatments before surgery. I'm sure the docs were being extremely cautious, but I went along with the recommendations with no hesitations.
    Regarding chemo, did they send your tumor out for oncotype testing? My score came back low indicating chemo would reduce my chance of recurrence by 2%, I declined chemo.
    Ahh, the heart rate. Sitting watching tv, I may get it down to 90. It rises like yours doing normal activities. This is true of all Hodgkin's patients treated long ago with rads. My PCP of 23 years insisted it was anxiety. It wasn't until I met my specialist that he explained the where and how of the HHR and even called my NEW PCP to explain it. Have you been getting annual echo's or stress echos as part of your followup? I have for the last 23 years and I have valve problems among other cardiac issues from the rads and chemo.
    Our care is so complicated as LT Survivors. You probably have read the importance I put on having a LT specialist on your team or at the very least a PCP willing to be versed in Survivorship Guidelines. I am so sorry that you have encountered another "gift" of our treatments. What really helped me was finding my specialist and joining the ACOR website to converse with survivors just like you and me that have "been there done that". I do remember some ACOR list member having recon successfully. It may be benficial to hear their stories. We really need to be informed facing our new challenges.
    Please vent away and ask anything that comes to mind. I'd be happy to try to help.
    Cathy

    surviving Hodgkins Disease
    I've just become a member of CSN and am looking to connect with survivors of Hodgkins. Thanks so much for these posts- so reassuring to know that I am not alone!!

    I was diagnosed in 1972 when I was 15. Stage 1V. Pretty bleak prognosis in those days. I had several rounds of radiation for tumors in my neck and chest. Subsequently underwent chemo after tumor in my chest reappeared. Like many other long term survivors I've had a thyroidectomy and have also had open heart surgery to replace my aortic valve. I chose to have bilateral MX about 11 years ago (with reconstruction by the way- no problems.). I had lung biopsies a few years ago for what turned out to be benign nodules. More recently have had trouble with my voice and occasional difficulty swallowing.

    Despite a somewhat rocky road I've managed to be in good health all these years. I've even completed six marathons though I walked the last one as it was only a year after my heart surgery. I am followed closely by a team at Dana Farber that specializes in cancer survivor issues and have found that to be a great help.

    I'd love to hear from other long term survivors- just to know you're "out there" would be great. And a word to those recently diagnosed- believe. I'm living proof.
  • jimwins
    jimwins Member Posts: 2,107

    surviving Hodgkins Disease
    I've just become a member of CSN and am looking to connect with survivors of Hodgkins. Thanks so much for these posts- so reassuring to know that I am not alone!!

    I was diagnosed in 1972 when I was 15. Stage 1V. Pretty bleak prognosis in those days. I had several rounds of radiation for tumors in my neck and chest. Subsequently underwent chemo after tumor in my chest reappeared. Like many other long term survivors I've had a thyroidectomy and have also had open heart surgery to replace my aortic valve. I chose to have bilateral MX about 11 years ago (with reconstruction by the way- no problems.). I had lung biopsies a few years ago for what turned out to be benign nodules. More recently have had trouble with my voice and occasional difficulty swallowing.

    Despite a somewhat rocky road I've managed to be in good health all these years. I've even completed six marathons though I walked the last one as it was only a year after my heart surgery. I am followed closely by a team at Dana Farber that specializes in cancer survivor issues and have found that to be a great help.

    I'd love to hear from other long term survivors- just to know you're "out there" would be great. And a word to those recently diagnosed- believe. I'm living proof.

    Welcome
    Welcome to the group and thank you for posting/sharing.
    I'm not a long term survivor yet but I'm very thankful
    for what I have :).

    Please continue to share with us.

    Hugs,

    Jim
  • 40yearsandcounting
    40yearsandcounting Member Posts: 18 Member
    jimwins said:

    Welcome
    Welcome to the group and thank you for posting/sharing.
    I'm not a long term survivor yet but I'm very thankful
    for what I have :).

    Please continue to share with us.

    Hugs,

    Jim

    connecting with others
    Jim thanks so much!!

    I've been able to read some of the posts from you and Cathy and they are all very reassuring and helpful. Just being in the company of others who have been through this is incredibly powerful.

    Wondering if you have any ideas for how I might be in touch with survivors who have been out there as long as I have (or longer certainly!!) I'm curious to know if other 40 plus year survivors have had other health issues that I should be aware of. I've had some of the same problems that have already been mentioned. It would be helpful to know if there are other things I should be thinking about. Not looking for trouble, just curious!!

    Hope you are doing well, and thanks again-
  • jimwins
    jimwins Member Posts: 2,107

    connecting with others
    Jim thanks so much!!

    I've been able to read some of the posts from you and Cathy and they are all very reassuring and helpful. Just being in the company of others who have been through this is incredibly powerful.

    Wondering if you have any ideas for how I might be in touch with survivors who have been out there as long as I have (or longer certainly!!) I'm curious to know if other 40 plus year survivors have had other health issues that I should be aware of. I've had some of the same problems that have already been mentioned. It would be helpful to know if there are other things I should be thinking about. Not looking for trouble, just curious!!

    Hope you are doing well, and thanks again-

    Howdy
    I found this at another site:

    20+ Years Survivors of Hodgkins

    You might want to start a brand new post here as well with
    the subject you mentioned.

    Jim
  • cathyp
    cathyp Member Posts: 376 Member
    jimwins said:

    Howdy
    I found this at another site:

    20+ Years Survivors of Hodgkins

    You might want to start a brand new post here as well with
    the subject you mentioned.

    Jim

    Hi 40 yrs and counting!
    Hi 40 yrs and counting! Congrats on 40 years. I know your survivorship is both a blessing and a curse. It doesn't come alone.

    Tomorrow it will be 23 years for me, dx at 29. I know you asked if there are other LT survivors like you out there. Many are members on the LT-Survivors ListServ at the ACOR website. Alot of issues are tossed about there. There is a lot of information.
    I know other survivors have encounted VC problems, it became fibrotic. I happen to see an ENT at Cornell Weill in NYC for my paralyzed VC. It was paralyzed during the surgery for the Hodgkins and a year later, teflon was injected in it. Now, a teflon granuloma is forming that we watch. The ENT I see has other HD survivors who have come to him with your issue. Originally, an ENT at NYU wanted to do surgery on the exterior of my neck to remove the granuloma replacing it with muscle from my neck. I had to remind him, I had rads to my neck and my muscle is fibrotic and useless. He had to change his way of thinking and now the solution is surgery from the interior of the throat. My worry is, my one operating VC will become fibrotic and paralyzed too. Have you been to an ENT yet?

    As for you, I'm thrilled that you see a LT Survivor Specialist at Dana Faber. This is the key to have a team that understands our unique problems from treatments.

    If you attempt to join the mailing list on ACOR and have any problems, let me know and I will help. I was amazed meeting our fellow survivors who have been there, done that, they all get it.
    Hope this finds you doing well and great to hear from another LT Survivor!
    Cathy

    ps: how proactive of you for you proph mx's! I wanted to do it and was met with "lets wait a bit" and bam, Invasive Ductal Carcinoma for me. Way to take charge of your health and body!