Hodgkin's - mantle radiation - lungs / heart / breast cancer

RachelF
RachelF Member Posts: 7
I'm new to CSN. I'm looking for input from 35-40 y.o. female(s) who have similar background to mine to exchange information, knowledge and experiences with long-term side effects. I was diagnosed in 4/1988, had a splenectomy and laperotomy, and 3+ months mantle/abdomen radiation. One of my lungs was radiated for a month before being blocked. I've never sought out anyone to share this with, but as I am more aware of possibilities of 2nd cancers and heart disease issues I would like to increase my awareness. I'm very athletic and since remission have always struggled w/shortness of breath and compromised cardiovascular performance in general. I have zero-tolerance to spicy foods (mouth pain). My thyroid was irradiated and is nonfunctional so I take synthetic hormones but still have extreme sensitivity to cold, v. dry skin/hair esp in winter, and I believe I have lower energy than I should considering my healthy habits (plenty of sleep, great nutrition and physical activity). I'd also appreciate any advice about finding an oncologist who could focus on my specific Hodgkin's long-term risks (lymphoma, lung, thyroid, breast cancers). Should I let that MD refer me to a cardiologist for preventative screening? Many thanks.
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Comments

  • janice123
    janice123 Member Posts: 3
    Hodgkins side affects of radiation in the 1980's
    I had mantel radiation when I was 21. Even though radiation saved my life I have had a lot of side affects from it ! My age is 48 at 45 I have had heart stens at least 6 of them because of heart disease ! I do struggle with shortness of breath often. Had a lump taken from my right breast(non cancerous) this time ! These are all long term affect from this cancer we had at an early age...pretty scary ! I have a cardiologist, oncologist and a MD! All I can say is that we need to keep our self healthy and hope they can find a way to help us get through all the side affect from years ago ! I do feel your pain and by the way my oncologist focus always on my specific Hodgkins long-term risks he tell me that he will battle any disease with preventative screening ! Hang in there!

    I was always fine until my 40's
    Jan
  • HD_Mickey
    HD_Mickey Member Posts: 2
    janice123 said:

    Hodgkins side affects of radiation in the 1980's
    I had mantel radiation when I was 21. Even though radiation saved my life I have had a lot of side affects from it ! My age is 48 at 45 I have had heart stens at least 6 of them because of heart disease ! I do struggle with shortness of breath often. Had a lump taken from my right breast(non cancerous) this time ! These are all long term affect from this cancer we had at an early age...pretty scary ! I have a cardiologist, oncologist and a MD! All I can say is that we need to keep our self healthy and hope they can find a way to help us get through all the side affect from years ago ! I do feel your pain and by the way my oncologist focus always on my specific Hodgkins long-term risks he tell me that he will battle any disease with preventative screening ! Hang in there!

    I was always fine until my 40's
    Jan

    Hodgkins side affects of radiation in the 1980's
    I am from Hamburg (Germany) and have been in remission for 25 years. In 1983, aged nineteen I have got diagnosis Hodgkins Disease and radiation therapy (44 Gy) to extended-field (axilla, mediastinum and neck). Five years later the Doc said to my, that I am healed and I would not need any follow-up care anymore.

    Now the first late effects appear: hypothyroidism, small changes at heart, fast pulse (90-100). In the last two years I put on weight a lot (20 kilos, maybe a accessory symptom of hypothyroidism) and I am not so fit as before (short breath, early exhausting). Now I try to get follow-up care and a treatment at a health resort to reduce my weight - but I do not find a doctor, who supports my in my willing. Furthermore I would like to check up my lungs, breast etc. But I do not find a Doc, who supports my. They do not see the reason why, because here are no specialists of late effects, nobody knows who to deal with long-term survivors. That is the reason why I am looking for more informations in America.

    Do you know surveys, studies, books etc., which describe late-effects of long-term survivors who have got radiation and give recommendations?

    Thank you and kind regards
    Mickey
  • soccerfreaks
    soccerfreaks Member Posts: 2,788
    HD_Mickey said:

    Hodgkins side affects of radiation in the 1980's
    I am from Hamburg (Germany) and have been in remission for 25 years. In 1983, aged nineteen I have got diagnosis Hodgkins Disease and radiation therapy (44 Gy) to extended-field (axilla, mediastinum and neck). Five years later the Doc said to my, that I am healed and I would not need any follow-up care anymore.

    Now the first late effects appear: hypothyroidism, small changes at heart, fast pulse (90-100). In the last two years I put on weight a lot (20 kilos, maybe a accessory symptom of hypothyroidism) and I am not so fit as before (short breath, early exhausting). Now I try to get follow-up care and a treatment at a health resort to reduce my weight - but I do not find a doctor, who supports my in my willing. Furthermore I would like to check up my lungs, breast etc. But I do not find a Doc, who supports my. They do not see the reason why, because here are no specialists of late effects, nobody knows who to deal with long-term survivors. That is the reason why I am looking for more informations in America.

    Do you know surveys, studies, books etc., which describe late-effects of long-term survivors who have got radiation and give recommendations?

    Thank you and kind regards
    Mickey

    long term survivors
    Mickey:

    Congratulations on your survivorship, first and foremost! And welcome to the site!

    Regarding research and such, I believe that this is a rather new topic for researchers, as we are only recently becoming long-term survivors such as yourself in large numbers. The research is beginning to happen, but, as I understand it, and you will understand if you know much at all about science, it takes years to collect ample statistics, so the research is in its infancy.

    I would advise, however, that you look at ACS' ezine, Curetoday. I get the thing hard copy, so it may take some technical dexterity to get to the exact articles, but go to www.curetoday.com and search around for survivor information. They have some very interesting articles about what is being discovered and what plans are for future study. (While you are at it, have a look at the articles in the issue previous to this one regarding genetic/epigenetic research: a light, a very bright light, in the darkness!).

    Again, congratulations on your survivorship.

    Take care,

    Joe
  • adamskia
    adamskia Member Posts: 1 Member
    HD_Mickey said:

    Hodgkins side affects of radiation in the 1980's
    I am from Hamburg (Germany) and have been in remission for 25 years. In 1983, aged nineteen I have got diagnosis Hodgkins Disease and radiation therapy (44 Gy) to extended-field (axilla, mediastinum and neck). Five years later the Doc said to my, that I am healed and I would not need any follow-up care anymore.

    Now the first late effects appear: hypothyroidism, small changes at heart, fast pulse (90-100). In the last two years I put on weight a lot (20 kilos, maybe a accessory symptom of hypothyroidism) and I am not so fit as before (short breath, early exhausting). Now I try to get follow-up care and a treatment at a health resort to reduce my weight - but I do not find a doctor, who supports my in my willing. Furthermore I would like to check up my lungs, breast etc. But I do not find a Doc, who supports my. They do not see the reason why, because here are no specialists of late effects, nobody knows who to deal with long-term survivors. That is the reason why I am looking for more informations in America.

    Do you know surveys, studies, books etc., which describe late-effects of long-term survivors who have got radiation and give recommendations?

    Thank you and kind regards
    Mickey

    long term effects of radiation treatment
    Hi Mickey,
    I had Hodgkin's disease in 1984 at age 28. I had mantle field (43.6 Gy) and abdominal (36 Gy) radiation.

    I have two resources you might want to take a look at. One is a guide to long term effects based on what type of cancer you had and what type of treatment. You can find it on the internet at: www.survivorshipguidelines.org There is a PDF file you can download. I found it a great tool to use in talking with my doctor. It was also good to see that the symptoms I've had are most likely not imaginary. It has helped me learn what types of things to anticipate and be on the look-out for.

    Another is a discussion group website for cancer survivors. They have lists you can sign up on where people email one another with questions and personal experiences. There are specific diesase lists, and one I have gotten a lot of information from is the "long term survivors" list. They are found at: http://listserv.acor.org There have been postings there from people all over the world.

    Good luck with your search for information!
    Kim
  • This comment has been removed by the Moderator
  • smolloy
    smolloy Member Posts: 1
    adamskia said:

    long term effects of radiation treatment
    Hi Mickey,
    I had Hodgkin's disease in 1984 at age 28. I had mantle field (43.6 Gy) and abdominal (36 Gy) radiation.

    I have two resources you might want to take a look at. One is a guide to long term effects based on what type of cancer you had and what type of treatment. You can find it on the internet at: www.survivorshipguidelines.org There is a PDF file you can download. I found it a great tool to use in talking with my doctor. It was also good to see that the symptoms I've had are most likely not imaginary. It has helped me learn what types of things to anticipate and be on the look-out for.

    Another is a discussion group website for cancer survivors. They have lists you can sign up on where people email one another with questions and personal experiences. There are specific diesase lists, and one I have gotten a lot of information from is the "long term survivors" list. They are found at: http://listserv.acor.org There have been postings there from people all over the world.

    Good luck with your search for information!
    Kim

    Mantle Field Radiation
    Hi all.
    I am new here but thought I could add what my long term affects have been. I had mantle field radiation following a bone marrow transplant in 1997. I have been in remission since. Here are the side effects. Lungs: asthma with some scarring. Heart: MI in 2004. You can find lots of information online. The MI, thank God, was mild but a great warning to stay on top of things. There is a lot of data about vessel changes on line. I get my mammogram yearly. See a cardiologist and an endocrinologist (thyroid destroyed). We are a new group of long term survivors and there will definatly be a learning curve. Good luck all!
    Shannon
  • hodgkoid2003
    hodgkoid2003 Member Posts: 94
    smolloy said:

    Mantle Field Radiation
    Hi all.
    I am new here but thought I could add what my long term affects have been. I had mantle field radiation following a bone marrow transplant in 1997. I have been in remission since. Here are the side effects. Lungs: asthma with some scarring. Heart: MI in 2004. You can find lots of information online. The MI, thank God, was mild but a great warning to stay on top of things. There is a lot of data about vessel changes on line. I get my mammogram yearly. See a cardiologist and an endocrinologist (thyroid destroyed). We are a new group of long term survivors and there will definatly be a learning curve. Good luck all!
    Shannon

    Mantle Field Radtiation
    Shannon,

    Just curious, how did you come to discover your late effects?

    Paul E. (Hodgkoid2003)
    "There are more of us out here than you realize."
  • peeps4
    peeps4 Member Posts: 7
    HD_Mickey said:

    Hodgkins side affects of radiation in the 1980's
    I am from Hamburg (Germany) and have been in remission for 25 years. In 1983, aged nineteen I have got diagnosis Hodgkins Disease and radiation therapy (44 Gy) to extended-field (axilla, mediastinum and neck). Five years later the Doc said to my, that I am healed and I would not need any follow-up care anymore.

    Now the first late effects appear: hypothyroidism, small changes at heart, fast pulse (90-100). In the last two years I put on weight a lot (20 kilos, maybe a accessory symptom of hypothyroidism) and I am not so fit as before (short breath, early exhausting). Now I try to get follow-up care and a treatment at a health resort to reduce my weight - but I do not find a doctor, who supports my in my willing. Furthermore I would like to check up my lungs, breast etc. But I do not find a Doc, who supports my. They do not see the reason why, because here are no specialists of late effects, nobody knows who to deal with long-term survivors. That is the reason why I am looking for more informations in America.

    Do you know surveys, studies, books etc., which describe late-effects of long-term survivors who have got radiation and give recommendations?

    Thank you and kind regards
    Mickey

    Follow up of late term side effects
    Mickey,
    You will have to be your own advocate, call a Pulmonary specialist for your lungs explain what you have been through, the same with a cardiologist. The hospital you went to orginally may hve changed there tune on long term side effects of cancer treatments. Set up an appointment and then explain any issues you have. YOu could ask the hosptial you had treatment for copies of your treatments and bring them with you on your visist and show them what you have been exposed too. You could go on line and check out different cancer hospitals
    Good luck.
  • peeps4
    peeps4 Member Posts: 7

    Mantle Field Radtiation
    Shannon,

    Just curious, how did you come to discover your late effects?

    Paul E. (Hodgkoid2003)
    "There are more of us out here than you realize."

    Mantle field radiation
    Hi,
    I am brand new to this site and I too have side effects from mantle radiation to my chest in the early 90's when I was 28. I also had abvd chemo for 6 months and 3 months of a another chemo with 6 weeks of radiation. My thyroid was destroyed too.
    I had a reoccurence 5 years ago when I was 41. I had a stem cell transplant (my own) which has been successful. With 2 weeks of radiation My side affects are rapid heart beat and lung disease. Just go diagnosed with that. I am to start Pulmonary rehab in 2 weeks. I have had teeth issues due to the mantle radiation , thick and thin spit one of them dried up so more prone to cavaties gum line. I have issues with sweating properly I over heat like a bad car in the summer .

    I just started to see a cardiologist. My heartbeat is rapid and high blood pressure.
    My question is does any one have issues eating and swallowing foods. Due to spit issue I can't eat really dry foods and foods that create to much mucus make me choke ( feel like I am choking). I have seen a nutrionist and I am just looking for some food solutions if some one has any. I was cancer free for a about 12 years. Just keep getting your check ups.
  • bgdbgd
    bgdbgd Member Posts: 3
    peeps4 said:

    Mantle field radiation
    Hi,
    I am brand new to this site and I too have side effects from mantle radiation to my chest in the early 90's when I was 28. I also had abvd chemo for 6 months and 3 months of a another chemo with 6 weeks of radiation. My thyroid was destroyed too.
    I had a reoccurence 5 years ago when I was 41. I had a stem cell transplant (my own) which has been successful. With 2 weeks of radiation My side affects are rapid heart beat and lung disease. Just go diagnosed with that. I am to start Pulmonary rehab in 2 weeks. I have had teeth issues due to the mantle radiation , thick and thin spit one of them dried up so more prone to cavaties gum line. I have issues with sweating properly I over heat like a bad car in the summer .

    I just started to see a cardiologist. My heartbeat is rapid and high blood pressure.
    My question is does any one have issues eating and swallowing foods. Due to spit issue I can't eat really dry foods and foods that create to much mucus make me choke ( feel like I am choking). I have seen a nutrionist and I am just looking for some food solutions if some one has any. I was cancer free for a about 12 years. Just keep getting your check ups.

    swallowing
    I have trouble swallowing sometimes, but it doesn't sound as extensive as the difficulties you are having. I remember it happening eating something like, for example, a big bite of a bagel.

    Beverly
  • scottwynter
    scottwynter Member Posts: 3
    Colon cancer risk
    I am hesitant to post this, but here goes.

    I was diagnosed with Hodgkin's in 86, and had a splenectomy. I underwent 3 months of mantle radiation. July of 2007, I was diagnosed with Stage IV colon cancer. I would be surprised if the radiation treatment I had in 86 was not in some way related to the colon cancer. I urge all of you to get a colonoscopy regularly. I am now cancer free (again), but it would have been much easier had it been detected earlier.
  • Allison2010
    Allison2010 Member Posts: 2
    Hodgkin's Survivor
    Rachel - are you still subscribing to this site? I just read your post today and feel like I could have written the exact thing.

    40 years old
    Hodgkin's at 20
    Breast Cancer at 35
    Training for a marathon

    Let me know if you get this, please.

    Thank you,

    Allison
  • ameski
    ameski Member Posts: 1
    hodgkins 1988, breast cancer 2009
    after beating stage IIB hodgkins with high dose (wish i knew #s) in 5/88 at age 19, i've been living virtually side-effect free except for chronic shortness of breath and fast pulse (90-ish resting) and as you said, rachel, compromised cardio performance in general. i do have some lung scarring and some kind of mild COPD according to the pulmonary function tests (pulmonologist has diagnosed asthma, which i'm totally not buying). also been told i have a very mild mitral valve prolapse. dry mouth and teeth problems have been issues, though relatively minor. my thyroid function has been normal, but we've been monitoring slow-growing nodules that are (so far) non-cancerous. in 10/2009, shortly after my 40th birthday and third baby in 5 years, my OB discovered a small breast cancer lump (and after testing, DCIS in other breast) that turned out to also involve 3 (of 14 tested) lymph nodes. so i had a bilateral mastectomy and just finished chemo (AC + Taxol). my drs are now looking at my old radiation records to see if axillary (underarm) radiation might be a possibility if they don't overlap the prior mantle field. apparently radiation there could decrease the odds of breast cancer recurrence. i was totally not worried abt breast cancer -- even knowing the increased odds -- bc i have no family history of it. being either pregnant and/or nursing since 2003 made getting mammograms difficult. had one in 2005 that was clean.

    i'm glad to know there are others of us out there...hopefully we'll be out there a lot longer. feel free to contact me if you're going thru something similar...
  • m-star
    m-star Member Posts: 441
    ameski said:

    hodgkins 1988, breast cancer 2009
    after beating stage IIB hodgkins with high dose (wish i knew #s) in 5/88 at age 19, i've been living virtually side-effect free except for chronic shortness of breath and fast pulse (90-ish resting) and as you said, rachel, compromised cardio performance in general. i do have some lung scarring and some kind of mild COPD according to the pulmonary function tests (pulmonologist has diagnosed asthma, which i'm totally not buying). also been told i have a very mild mitral valve prolapse. dry mouth and teeth problems have been issues, though relatively minor. my thyroid function has been normal, but we've been monitoring slow-growing nodules that are (so far) non-cancerous. in 10/2009, shortly after my 40th birthday and third baby in 5 years, my OB discovered a small breast cancer lump (and after testing, DCIS in other breast) that turned out to also involve 3 (of 14 tested) lymph nodes. so i had a bilateral mastectomy and just finished chemo (AC + Taxol). my drs are now looking at my old radiation records to see if axillary (underarm) radiation might be a possibility if they don't overlap the prior mantle field. apparently radiation there could decrease the odds of breast cancer recurrence. i was totally not worried abt breast cancer -- even knowing the increased odds -- bc i have no family history of it. being either pregnant and/or nursing since 2003 made getting mammograms difficult. had one in 2005 that was clean.

    i'm glad to know there are others of us out there...hopefully we'll be out there a lot longer. feel free to contact me if you're going thru something similar...

    Hi
    I too was dx with HL back

    Hi

    I too was dx with HL back in 1990 aged 17. Had 6 months chemo.Not exactly sure which combo i had but pretty sure it ended OPP. Also had 4 weeks mantle radiation-again,not sure of strength of rads.Here in the UK you don't get your medical info given you.

    Was dx with asthma about 6 months after finishing rads.Took it as gospel til it started to improve over a couple of years.I have always said it was lung damage from the rads but my dr was having none of it!I struggle with exercise that causes me to get out of breath,eg,running,skipping,and other hi-impact aerobic exercise. I suffer with palpataions and a fast,"odd" heart beat and chest pains.Had numerous ECG's,and even an EKO which they said "showed nothing significant".That was under the cardiologist at the hospital.I asked him if the mantle rads could affect me heart and cause problems and he sain no,but i'm pretty sure he just didn't wanna admit it incase of a law suit!Which i would NEVER do!

    Next came the dental problems.Because the rads cross-sectioned my lower jaw,i suffer with dry mouth and teeth decayed very easily,despite taking good care of them.I was told this would correct itself 2 yrs after rads-it never did.

    7 yrs ago i was contacted to say they now found that mantle rads for HL, to women under 30,in the last 30 yrs,put me at higher risk of breast cancer. I just had prophylactic bilateral mastectomies in Feb and i'm in the middle of reconstruction right now.I didn't wanna sit and wait for it to get me,as once it's in,Lord knows where it may spread to by the time you find it.

    About 3 yrs ago my thyroid levels finally dropped enough to start on Thyroxine.I've been tested for yrs but my levels were borderline for yrs also.Thankfully the dr put me on thyroxine (50mg-or mcg-not sure!)straight away and that small dose stabilised my levels before i got huge! I lost the weight i'd put on.

    I was told by my onc that due to my past treatments,i have an increased risk of breast, skin, thyroid and lung cancer.But they focused on the BC as that was the one that posed the most risk.

    I (stupidly) looked stuff up on the internet too about side effects of chemo and rads for HL and scared myself stupid.Big mistake. Ignorance was bliss to an extent.

    Now i've had my breasts removed,i guess my biggest fear is the possible heart problems.It used to be the fear of getting cancer again-and i do still worry-but the fear of dropping dead from a major heart problem,and not having the chance to say goodbye to my daughter and hub,is the worst fear. Especially as the cardiologist i saw has discharged me after finding nothing on the EKO! I know my heart is not right but how can you convince someone who doesn't believe their is a link to my rads??!! All he saw was a 'healthy' 36 yr old woman!

    Hip problems have been bad,as have my knees and now my shoulders are joining in the party! I didn't know this could have been caused by my treatments until i read it on this site,but now it makes sense.I was tested for rhumatoid arthritis a few yrs back-it came back negative.The dr said it could be the start of osteo arthritis but wasn't sure.I'm somewhat relieved in a way that it may be from my treatment,as at least i know now.Walking long distance is bad for my hips and knees.I do TAE KWONDO twice a week and that keeps my joints moving,though it can cause stress to them at times.I do have to wear knee straps when my knees are bad


    MY JOINTS CLICK REAL BAD!!!!!!!!!!!!!

    Does anyone else suffer from clicky joints??????
    My toes,ankles,feet,knees,HIPS!(thats gross),shoulders and elbows. Even my back has cracked before!oh and my jaw too!

    ummm.....i think thats about it =)
    No late effects clinics in UK. They seem to deny any involvement from chemo/rads,except my onc. My family doc hasn't a clue about side effects so when i go with a problem,he just treats it as being nothing.How can a healthy 36 yr old possibly have heart problems??? or arthritis????? of lung malfunction??? I wish they were better informed by the onc's about side effects.....
  • netgibas
    netgibas Member Posts: 2

    Hodgkin's Survivor
    Rachel - are you still subscribing to this site? I just read your post today and feel like I could have written the exact thing.

    40 years old
    Hodgkin's at 20
    Breast Cancer at 35
    Training for a marathon

    Let me know if you get this, please.

    Thank you,

    Allison

    Hodgkin Survivor
    Hi Allison-

    I am new to the site and was wondering if you heard back from Rachel. I also felt I could have written her post. I was diagnosed with Hodgkins when I was 25. I am now 48 and have had thyroid issues since I was 30. First Hyper, now Hypo. Back in Novemeber 2009 I had a mole removed due to skin cancer. It was in a weird place, in my armpit. The doctor mentioned that those with compromised immune systems will get skin cancer in strange places. I also try to stay active and worry about the heart complications and breast cancer.

    Do you have issues with doctors not really listening to you? I realized I have to be forceful with the doctors when they start to to look at blood results ranges only. They assume everyone fits within the thyroid ranges but I know at what level I feel the best. In fact I have left two doctors because they refused to adjust my medication because they felt the numbers were OK.

    Anyway, I hope thing are going well for you.

    Jeanette
    (Virginia)
  • m-star
    m-star Member Posts: 441
    netgibas said:

    Hodgkin Survivor
    Hi Allison-

    I am new to the site and was wondering if you heard back from Rachel. I also felt I could have written her post. I was diagnosed with Hodgkins when I was 25. I am now 48 and have had thyroid issues since I was 30. First Hyper, now Hypo. Back in Novemeber 2009 I had a mole removed due to skin cancer. It was in a weird place, in my armpit. The doctor mentioned that those with compromised immune systems will get skin cancer in strange places. I also try to stay active and worry about the heart complications and breast cancer.

    Do you have issues with doctors not really listening to you? I realized I have to be forceful with the doctors when they start to to look at blood results ranges only. They assume everyone fits within the thyroid ranges but I know at what level I feel the best. In fact I have left two doctors because they refused to adjust my medication because they felt the numbers were OK.

    Anyway, I hope thing are going well for you.

    Jeanette
    (Virginia)

    Hi Jeanette,
    was your skin

    Hi Jeanette,

    was your skin cancer noticable to you? I mean,did you find it yourself? My onc told me i was at increased risk of it and im always very careful in the sun,but i didnt realise they could come up in obscure places like your armpit!

    I have just had a preventative double mastectomy as ny risk of BC was very high due to the mantle radiation. It was a constant worry and since being contacted 7 yrs ago by the hospital to say all women who had mantle rads for HL in the last 30 years(under the age of 30) are now deemed high risk,i decided to be proactive. Im glad i did as i've heard from women on here who have developed it since.Some on the similar time scale to myself,give or take a few yrs. for me,it was a case of when not if and i was so scared every yr at my mammogram and MRI scans.

    I will get my hubby to check me out for moles also as its not something i really do but i guess i must.
  • netgibas
    netgibas Member Posts: 2
    m-star said:

    Hi Jeanette,
    was your skin

    Hi Jeanette,

    was your skin cancer noticable to you? I mean,did you find it yourself? My onc told me i was at increased risk of it and im always very careful in the sun,but i didnt realise they could come up in obscure places like your armpit!

    I have just had a preventative double mastectomy as ny risk of BC was very high due to the mantle radiation. It was a constant worry and since being contacted 7 yrs ago by the hospital to say all women who had mantle rads for HL in the last 30 years(under the age of 30) are now deemed high risk,i decided to be proactive. Im glad i did as i've heard from women on here who have developed it since.Some on the similar time scale to myself,give or take a few yrs. for me,it was a case of when not if and i was so scared every yr at my mammogram and MRI scans.

    I will get my hubby to check me out for moles also as its not something i really do but i guess i must.

    Skin Cancer
    Hi-

    Every so often I would wake up and there would be a spot of blood on the sheets. I sleep on my right side with my arm under the pillow. This was the side that the skin cancer was on. Anyway it took a while until I finally figured out where the blood was comming from because I get in the shower 1st thing when I get out of bed and I would wash the blood off the mole. The mole did look redder than other moles. Finally one morning when I was in the shower the mole was sensitive to washing so that was the 'aha' moment of where the blood was coming from. Since the time frame between blood incidents was long I just thought I was scratching myself when I slept. Once I figured out that it was the mole I went to the dermatologist and it was removed and sent to the lab. It came back positive for basal cell carcinoma and I went back and they cut out the area around where the mole was and it was sent back to the lab. What they were looking for is if the edges of the cut area had cancerous cells or were clear. If there were cancer cells they would have to go with a larger diameter until the edges where free of cancer cells.

    Take care & keep in touch.

    Jeanette
  • m-star
    m-star Member Posts: 441
    netgibas said:

    Skin Cancer
    Hi-

    Every so often I would wake up and there would be a spot of blood on the sheets. I sleep on my right side with my arm under the pillow. This was the side that the skin cancer was on. Anyway it took a while until I finally figured out where the blood was comming from because I get in the shower 1st thing when I get out of bed and I would wash the blood off the mole. The mole did look redder than other moles. Finally one morning when I was in the shower the mole was sensitive to washing so that was the 'aha' moment of where the blood was coming from. Since the time frame between blood incidents was long I just thought I was scratching myself when I slept. Once I figured out that it was the mole I went to the dermatologist and it was removed and sent to the lab. It came back positive for basal cell carcinoma and I went back and they cut out the area around where the mole was and it was sent back to the lab. What they were looking for is if the edges of the cut area had cancerous cells or were clear. If there were cancer cells they would have to go with a larger diameter until the edges where free of cancer cells.

    Take care & keep in touch.

    Jeanette

    wow....well thanks for
    wow....well thanks for sharing that. I will keep a closer eye on my skin.Its not something i think about alot as you tend to associate skin cancer with the sun and repetitive burns etc.....

    Do you know if the skin cancers (from the mantle rads) are likely to just appear in the sites that were irradiated?? or can they appear anywhere on the body?

    certainly food for thought.
    thanks again

    Kay
  • cathyp
    cathyp Member Posts: 376 Member
    m-star said:

    wow....well thanks for
    wow....well thanks for sharing that. I will keep a closer eye on my skin.Its not something i think about alot as you tend to associate skin cancer with the sun and repetitive burns etc.....

    Do you know if the skin cancers (from the mantle rads) are likely to just appear in the sites that were irradiated?? or can they appear anywhere on the body?

    certainly food for thought.
    thanks again

    Kay

    "Full Body Scan"
    Kay,

    I just went to the dermatologost for a full body scan this week. The Doc examined every inch of my body, even my scalp for anything suspicious. Nothing was found and I will return in a year or sooner if need be. I, like you, had mantle radiation 20 years ago for Hodgkins. I did have a keratosis on my neck that she used liquid nitrogen to take off. The scan isn't any type of test, just a visual from the doctor!

    Cathy
  • m-star
    m-star Member Posts: 441
    cathyp said:

    "Full Body Scan"
    Kay,

    I just went to the dermatologost for a full body scan this week. The Doc examined every inch of my body, even my scalp for anything suspicious. Nothing was found and I will return in a year or sooner if need be. I, like you, had mantle radiation 20 years ago for Hodgkins. I did have a keratosis on my neck that she used liquid nitrogen to take off. The scan isn't any type of test, just a visual from the doctor!

    Cathy

    hi Cathy
    so it may be worth

    hi Cathy

    so it may be worth my while in paying to see a dermatologist and getting them to give me the once over? Not sure i'd get it on our health system without being reffered and to do that i have to have a visible problem in the 1st place.

    Glad all was well with you. I'm sure paying for a check over once a year will be money well spent.
    Thanks for that

    kay =)