Can any of you share what your symptoms were prior to diagnosis?

1246

Comments

  • forme
    forme Member Posts: 1,161 Member
    COBRA666 said:

    FEW SYMTOMS
    FORME,
    FIRST OF ALL WELCOME TO THE SITE. IT IS LIKE ONE BIG FAMILY HERE. NEXT, LET ME SAY IT GENTLY. YOUR PCP IS AN A**HOLE. YOU HAVE THE CLASSIC SYMTOMS OF LYMPHOMA. ANY DR. WITH HALF A BRAIN SHOULD SEE THAT. I DO NOT THINK THEY CAN TELL JUST FROM AN ENLARGED SPLEEN AND LIVER IF YOU HAVE LYMPHOMA OR NOT, BUT AN ENLARGED SPLEEN AND LIVER IN ITSELF IS NOT NORMAL. A CT SCAN WILL SEE ANY ENLARGED LYMPH NODES AND IT DID SEE A FEW.I AM SURE THEY SAW SOMETHING FOR HIM TO MAKE THAT STATEMENT. THE LYMPH NODES IS WHAT I SUSPECT. I DON'T KNOW WHY THESE HALF WITTED DRS. ALWAYS PASS THIS STUFF OFF AS SOMETHING ELSE THAT COULD BE CAUSING THESE SYMTOMS. LYMPHOMA IS NOT A RARE DISEASE. 66,000 PEOPLE WILL BE DIAGNOSED THIS YEAR WITH IT. IT IS TREATABLE,BUT ONLY IF IT IS TREATED. IF NOT IT CAN BE DEADLY,JUST LIKE ANY DISEASE IF LEFT UNTREATED. BY ALL MEANS HAVE IT CHECKED FARTHER. YOU ARE PAYING THE DR. TO FIND OUT WHAT IS WRONG WITH YOU. HE IS NOT PAYING YOU TO COME AND SEE HIM. IT TICKS ME OFF WHEN I HEAR ABOUT THESE DRS. THAT HAVE THAT WHOLLIER THAN THOU ATTITUDE. SORRY ABOUT GETTING UP ON THE SOAPBOX,BUT WE ARE TALKING ABOUT YOUR HEALTH AND WELL BEING. REMEMBER WHEN YOU LEAVE THE DRS OFFICE HE JUST GOES TO THE DOOR AND YELLS"NEXT". YOU ON THE OTHER HAND HAVE TO GO HOME WITH THE PAIN SUFFERING TO DEAL WITH. BELIEVE ME, IF IT WAS HIM OR HIS FAMILY THEY WOULD BE CHECKED FROM HEAD TO TOE.

    Thanks
    Hi again, I found your response. Thanks for the support. I hope that Monday I will get a call back from the local cancer center to set an app with a hematologist. It just makes sense to follow this through with or without my pcp. He is really not to bad, just believes in taking a slow approach to things. I usally agree with him, but not this time.
    I will keep you all posted. Thanks for the welcome.
    Lisha
  • forme
    forme Member Posts: 1,161 Member
    allmost60 said:

    Absolutely get this checked out!
    Hi forme...
    I joined this site on July 8th-10, after being diagnosed with Follicular NHL on June 16th-10, so I too am fairly new here. John is absolutely right telling you to get this checked out. In Jan of this year I found a tiny lump on the left side of my neck and then a few weeks later I found another lump on the left side of my groin. My PCP sent me immediately for an ultra sound on the groin lump because it was bigger than the one on my neck. The results showed enlarged lymph glands plus 3 lumps. My PCP decided we would wait until my physical in May to re-check the lumps because I was feeling great and had no outward symptoms to raise concern. Plus, I had just gotten over a bad bout with bronchitis and we thought maybe the lymph glands were swollen due to medications I had been put on to get over that. Come May 25th...(time for my physical), I knowticed the lump on my groin had grown. Once again my PCP sent me in for a new ultra sound and low and behold the 3 prior lumps had not only grown, but 3 more had developed. Two days later I had a CT-scan which showed 6 tumors in my groin...swollen lymph nodes and lumps in the back of my stomach and 3 lumps in my neck, not just the tiny one I had felt in January. That was when my doctor first mentioned the possibility of lymphoma. He immediately scheduled me for a biopsy of one of my groin tumors(the largest of all lumps) which confirmed I had Follicular NHL...stage 3....Type A(un-symptomatic)...Grade 2/low. PCP immediately...(with-in 5 days of the groin biopsy results) had me scheduled to see a cancer doctor at our local cancer center. My cancer doctor scheduled a bone biopsy which showed no involvement in the bone as of yet. From May 25th to now, there has been alot of waiting for test results which can be "VERY" stressful, but I am soooo thankful to have a PCP that jumped on this from the moment he felt things weren't right with me...(lumps). I am currently in a "Watchful Waiting" time period and not receiving any form of treatment, and won't until the cancer involves the bone, or some other part of my body, or I start having B symptoms. This is a weird period of time for me, because I always wonder..."Where is it going and when"?? Anyways...please pursue further diagnosis even if it means finding a new PCP. John is 100% correct when he says.."If it was the doctors family member, he would have them checked out from head to toe"!! YOU should be treated no differently! Let us know how it goes for you.
    Sue

    Thanks
    Hi, thanks for the welcome and the respone. I am planning to try and get an app with a hematologist on Monday. I do think that I know my self and myself says to get checked. Things just don't add up for me. What is starting to add up is lymphoma. I hope it is not the case, but if it is, then I will deal with it.Thanks again.
    Lisha
  • truckingalong
    truckingalong Member Posts: 445 Member
    greg814 said:

    HL Symptons
    I am new here and just reading up on Hodkins and I learned alot from you all. Two months ago I noticed a large growth in the clavical area. My doctor sent me for an MRI and xrays. They determined their is a mass in the lungs and swallon Lymphs. I have extreme pain in both elbows and swollen knees. My spleen has also been detected as inlarged. So many doctors and appointments until I found one that knows what they are talking about. I am still under going test and a bit scared. I am 47 and have five children and dont know what to exspect next. It is a week away until my next appointment at Mount Signi Hospital Cancer Unit in NYC.

    HL Symptoms
    Hello,Greg,

    It's been over a month - how did things go for you? I feel scared too but feel less when I hear all the supportive comments from you and sharing here. I also have HL and have to wait for the more detailed results this Thursday for treatment options ... Thanks for sharing and you are in my thoughts for good things to happen to you.

    Liz
  • Jessykah007
    Jessykah007 Member Posts: 2
    lees1953 said:

    symptoms
    this is why I love these support groups! we just need reinforcement sometimes

    I didn't really have symptoms when I was diagnosed; had gone to DR for diverticulis; it wouldn't go away even after antibiotics so they sent me for scan. I had extremely swollen abdomen but ONC at first was convinced it was a result of the diverticulits.

    now diagnosed as Stage IV follicular due to bone marrow involvement, I've been on WW since surgery in April. But the symptoms have kicked in!! I am bone tired, like when I was when I first got pregnant and something is sucking the life out of you...except that was 32 years ago!
    I am so tired that often at the end of the day I cry all the way home from work..15 miles.
    And I am burning up! not hot flashes just HOT! I am freezing my husband and co-workers, they bought me a fan at work like they use in the server rooms. Abdomen is still swollen
    but I couldn't lose a lb if I tried; in fact I really eat less than before, but because the surgery couldn't be done laproscopy had 22 staples and took a long while to be able to walk much...but now the fatigue discourages me fro doing that.

    DR says he will leave it up to me if I want to start Rituxin but he isn't sure it will help my symptoms? any of you? did it help your symptoms?? something needs to change; next visit Oct 5...any input? sheila

    Hi I was just diagnosed a couple weeks ago with Stage 3 FNHL... pending results on my bone marrow biopsy... reading your symptoms is like what i am experiencing no sweats but i feel on fire at night .... so warm then go cold in the morning. It drives me nuts... Im curious what treatment did you do? I am 31 no kids yet (but want them bad) and would love to know how your treatment went since we are so close in age with same cancer :). Hope all is well.

    Thanks,
    Jessica
  • Jessykah007
    Jessykah007 Member Posts: 2
    lees1953 said:

    symptoms
    this is why I love these support groups! we just need reinforcement sometimes

    I didn't really have symptoms when I was diagnosed; had gone to DR for diverticulis; it wouldn't go away even after antibiotics so they sent me for scan. I had extremely swollen abdomen but ONC at first was convinced it was a result of the diverticulits.

    now diagnosed as Stage IV follicular due to bone marrow involvement, I've been on WW since surgery in April. But the symptoms have kicked in!! I am bone tired, like when I was when I first got pregnant and something is sucking the life out of you...except that was 32 years ago!
    I am so tired that often at the end of the day I cry all the way home from work..15 miles.
    And I am burning up! not hot flashes just HOT! I am freezing my husband and co-workers, they bought me a fan at work like they use in the server rooms. Abdomen is still swollen
    but I couldn't lose a lb if I tried; in fact I really eat less than before, but because the surgery couldn't be done laproscopy had 22 staples and took a long while to be able to walk much...but now the fatigue discourages me fro doing that.

    DR says he will leave it up to me if I want to start Rituxin but he isn't sure it will help my symptoms? any of you? did it help your symptoms?? something needs to change; next visit Oct 5...any input? sheila

    Hi I was just diagnosed a couple weeks ago with Stage 3 FNHL... pending results on my bone marrow biopsy... reading your symptoms is like what i am experiencing no sweats but i feel on fire at night .... so warm then go cold in the morning. It drives me nuts... Im curious what treatment did you do? I am 31 no kids yet (but want them bad) and would love to know how your treatment went since we are so close in age with same cancer :). Hope all is well.

    Thanks,
    Jessica
  • truckingalong
    truckingalong Member Posts: 445 Member
    webozo said:

    jackie had night sweats had
    jackie had night sweats had trouble breathing (she thought she was getting asthma) she also so had itching very bad itching she would scratch untill she bleed. the breathing was from the bigger turmor pushing on her lung she also would get light headed to the point of fainting. she had trouble sleeping. i don't know if this helps. jackie has hogkins.

    Hogkins
    Wonder how Jackie is doing now... I also have Hodgkins. I noticed that most of the posts deal with non-Hodgkins.

    I too had ocassional night sweats, 30 lbs loss, itching, body aches and fatique. Swollen lymph nodes in neck, armpits and groin plus little on lung and pelvic area. I just started on ABVD chemo - and have all those side effects but mostly recovered now and then I go for the 2nd treatment next Tues. I pray for Jackie's recovery and mine. Thanks for sharing.

    Liz
  • GalacDad
    GalacDad Member Posts: 40
    Symptoms
    Deanna,
    Like so many of the others, I did not have "classic" symptoms. During a med exam for blocked sinuses, they discovered a marble size lump at my lt collar bone. Never experienced any pain, weight loss, or fatique. Thought I was the picture of good health. GO FIQURE. Treatment came fast and with that comes the fatique, eating problems all the others.
    Keep us updated with Diagnosis. Many different types of this around, with different treatments and effects. You have a world of experienced survivors here all willing to help.
    Dave
  • rclaxb
    rclaxb Member Posts: 13
    My symptoms
    I was diagnosed March 26, 2009. In early February I had my regular doctor check up and all was well. Five days later I noticed a lump in my neck on the left side (on a Saturday). I did have about two night sweats but had no idea what that meant except I get hot sleeping from time to time. I had no weight loss or other symptoms. My doctor sent me to my allergist who is a n ENT doctor and he scheduled me for surgery to do a biopsy. I was devistated when he told me I had follicular lymphoma. The research started. Since I was leaving for a trip to Europe in a week, I was referred to an onologist who saw me in a day or two and within three days had all staging tests completed with result, except for the bone marrow result. The day after returning from Europe we were in the doctor's office and found out stage 3 with no bone marrow involvement and he recommended "watch and wait". I was not comfortable with that option and he called Sitemen Cancer Center in St. Louis and an ocologist was doing clinical trials. I saw her in June 2009. Found out my insurance will not permit any clinical trials but stayed with Dr. Bartlett at Sitemen who recommended "watch and wait", that was my second opinion. Near the end of August a new lump on my right neck appeared and I had a biopsy. Results show a few more larger cells but that was it. My doctor recommended R-CHOP, which sarted Nov. 18, 2009 and finished March 3, 2010. In May, I started Rituxan every three months for two years. Presently I have a rash that started 21 days after my May treatment and went away within a week. Now I have it back, starting 21 days after the second treatment. Dr. does not know what to make of it. I researched follicular lymphoma all the time. I keep a binder of all my tests and have copies of all reports. My oncology team is great. I did spend a week in the hospital a week after my last chemo due to neutropenic fever.
  • debra26
    debra26 Member Posts: 4
    Symptoms
    My symptoms were just a hacking cough that would not go away. It was sooo annoying and every over the counter meds I tried didn't work. I don't remember having any night sweats until after I started chemo. I was so tired, I would get tired very easily and didn't even know why. My hair did start to thin out some and I just though I had a cold with some stress until I was diagnosed. I had the cancer in my lymph nodes in my chest and they collapsed my left lunch by the time I had my biopsy.
  • dixiegirl
    dixiegirl Member Posts: 1,043 Member
    debra26 said:

    Symptoms
    My symptoms were just a hacking cough that would not go away. It was sooo annoying and every over the counter meds I tried didn't work. I don't remember having any night sweats until after I started chemo. I was so tired, I would get tired very easily and didn't even know why. My hair did start to thin out some and I just though I had a cold with some stress until I was diagnosed. I had the cancer in my lymph nodes in my chest and they collapsed my left lunch by the time I had my biopsy.

    :)
    Are you hungry?

    I am sorry, but it makes me chuckle. Are you feeling better now? I am glad to know that I'm not the only one who types odd things now and then.

    Take care!
    Beth
  • COBRA666
    COBRA666 Member Posts: 2,401 Member
    dixiegirl said:

    :)
    Are you hungry?

    I am sorry, but it makes me chuckle. Are you feeling better now? I am glad to know that I'm not the only one who types odd things now and then.

    Take care!
    Beth

    typos
    Beth,
    Same here. I am not a typist by any means, but getting to be the fastest 2 finger typist in town. When I get done typing I go back and read what I typed and sometimes say to myself, What the heck is this. I can't even read some of the words. I have to go thru and correct all the misspells. Some I can't even figure out what they are supposed to be. Then sometimes I transpose the letters real bad. If I sent anything with out spell checking nobody would be able to read it. I know how to spell, but the chemo brain takes over, at least thats what I tell myself. I am sure a lot of us out there have started to notice this with their own typing when on chemo. John
  • dixiegirl
    dixiegirl Member Posts: 1,043 Member
    COBRA666 said:

    typos
    Beth,
    Same here. I am not a typist by any means, but getting to be the fastest 2 finger typist in town. When I get done typing I go back and read what I typed and sometimes say to myself, What the heck is this. I can't even read some of the words. I have to go thru and correct all the misspells. Some I can't even figure out what they are supposed to be. Then sometimes I transpose the letters real bad. If I sent anything with out spell checking nobody would be able to read it. I know how to spell, but the chemo brain takes over, at least thats what I tell myself. I am sure a lot of us out there have started to notice this with their own typing when on chemo. John

    LOL
    Who needs chemo brain to type funky LOL. I say things wrong all the time and I talk on the phone all day at work. Sometimes people are laughing at me, sometimes with me. My tongue gets ties big time. It's a real pain in the behind when your job is talking on the phone LOL

    I don't type fast by any means. I think I have to concentrate so hard sometimes it slows me down, although I do try to re-read what I write before sending email from work cause I make some pretty stupid mistakes. When they are funny it just makes it better.

    Thanks
    Beth
  • gyrene72
    gyrene72 Member Posts: 7
    Symptoms prior to dx
    I haven't read through all the comments, but I'll share mine anyway. It started one morning when I put my feet on the floor, and it felt like I was stepping on sharp gravel. And, on a tile floor, no less.
    I tried a couple of different doctors, until my daughter (a nurse) told me to go to a neurologist. Huh ?? Anyway, I did, and after some exhaustive testing, he concluded that I had Peripheral Neuropathy. A dying back of the nerve covering in the extremities, and a corresponding dying of the nerve endings. Hummm OK, what now. He prescribed several prescriptions, and told me that he had seen something he didn't like, and was referring me to a hematologist. Huh?? again. A blood doctor? Yep. An oncologist to be exact. First meeting with the oncologist, he did a bone marrow biopsy, and within an hour, came in and said, "Yep, you have cancer"...What a blow!! My immediate reaction was, "Is it curable?. his response was "no". I fired back, "Treatable?" yes, he said. I said, "Then get on with it, now!" Not really that simple, but we started that day.
    Turns out that the cancer was the cause of the neuropathy. I don't to this day know just how long I had had the cancer before it triggered the nerve problem. It could have been months, or years. No one knows.
    Hope this has some positive meaning for you. My prayers go with this.Tom




















































    //
  • Deb17910
    Deb17910 Member Posts: 12
    HL symptoms
    Hi...I was diagnosed in 1994 at age 31 with HL. My symptoms were left shoulder pain ,only a couple of bad night sweats and rashes on both my palms on my hands. (my Dr. said usually the rashes are on the bottoms of feet. I was blown off a year before DX because of the shoulder pain. Dr said I probably hurt my neck. Finally, i couldn't take it anymore and was sent to an orthopedist, who did a xray of my shoulder and saw a large shadow, which prompted a chest xray and there it was....a large mediastinal mass. Did the biopsy thing....then 9 months of chemo followed by 6 weeks of radiation. What a nightmare the radiation was....I have had some health issues since all of that. In 2001 I had a baby and went into congestive heart failure due to undiagnosed mitral valve regurgitation. I was asymptomatic until i got pregnant. Yes, damage to my heart from the radiation treatment. I take meds to control it and its been fine. I also have SOB and a ton of scarring on my lungs also from the RADS. My normal chest xrays are not normal looking, it looks like I have TB, but I don't. I have hypothyroidism and take synthroid, also from the RADS. And now a lump was found in my right breast and it is being biopsied tomorrow. Trying to stay positive but it's hard. It's not a good sign when the radiologist asked me who my oncologist is. Didn't mean to tell my whole story,,,,,it just came out! :) good luck to everyone!
  • Chris17
    Chris17 Member Posts: 175
    Deb17910 said:

    HL symptoms
    Hi...I was diagnosed in 1994 at age 31 with HL. My symptoms were left shoulder pain ,only a couple of bad night sweats and rashes on both my palms on my hands. (my Dr. said usually the rashes are on the bottoms of feet. I was blown off a year before DX because of the shoulder pain. Dr said I probably hurt my neck. Finally, i couldn't take it anymore and was sent to an orthopedist, who did a xray of my shoulder and saw a large shadow, which prompted a chest xray and there it was....a large mediastinal mass. Did the biopsy thing....then 9 months of chemo followed by 6 weeks of radiation. What a nightmare the radiation was....I have had some health issues since all of that. In 2001 I had a baby and went into congestive heart failure due to undiagnosed mitral valve regurgitation. I was asymptomatic until i got pregnant. Yes, damage to my heart from the radiation treatment. I take meds to control it and its been fine. I also have SOB and a ton of scarring on my lungs also from the RADS. My normal chest xrays are not normal looking, it looks like I have TB, but I don't. I have hypothyroidism and take synthroid, also from the RADS. And now a lump was found in my right breast and it is being biopsied tomorrow. Trying to stay positive but it's hard. It's not a good sign when the radiologist asked me who my oncologist is. Didn't mean to tell my whole story,,,,,it just came out! :) good luck to everyone!

    HL symptoms
    You have been through so much, i wish you well and will keep good thoughts for you on the results, this website is for what you just did, you told your story, which i believe is theraputic, you need to be able to discuss what ever is on your mind, theres a lot of nice people here who are understanding and can relate to what you have been through so please dont feel bad about it.Keep in touch and let us know the results, good luck to you!
    Chris (FNHL stage3)4-08 in remission
  • allmost60
    allmost60 Member Posts: 3,178 Member
    Deb17910 said:

    HL symptoms
    Hi...I was diagnosed in 1994 at age 31 with HL. My symptoms were left shoulder pain ,only a couple of bad night sweats and rashes on both my palms on my hands. (my Dr. said usually the rashes are on the bottoms of feet. I was blown off a year before DX because of the shoulder pain. Dr said I probably hurt my neck. Finally, i couldn't take it anymore and was sent to an orthopedist, who did a xray of my shoulder and saw a large shadow, which prompted a chest xray and there it was....a large mediastinal mass. Did the biopsy thing....then 9 months of chemo followed by 6 weeks of radiation. What a nightmare the radiation was....I have had some health issues since all of that. In 2001 I had a baby and went into congestive heart failure due to undiagnosed mitral valve regurgitation. I was asymptomatic until i got pregnant. Yes, damage to my heart from the radiation treatment. I take meds to control it and its been fine. I also have SOB and a ton of scarring on my lungs also from the RADS. My normal chest xrays are not normal looking, it looks like I have TB, but I don't. I have hypothyroidism and take synthroid, also from the RADS. And now a lump was found in my right breast and it is being biopsied tomorrow. Trying to stay positive but it's hard. It's not a good sign when the radiologist asked me who my oncologist is. Didn't mean to tell my whole story,,,,,it just came out! :) good luck to everyone!

    Alot to deal with
    Hi Deb,
    You have really been through alot. I'll keep good positive thoughts for you with the biopsy on your breast tomorrow. You have a wonderful support group here to communicate with so please let us know what the biopsy shows. Try to stay strong and I'll keep you in my prayers. Love...Sue (FNHL-2-3A-6/10)
  • tcvine
    tcvine Member Posts: 174
    Deb17910 said:

    HL symptoms
    Hi...I was diagnosed in 1994 at age 31 with HL. My symptoms were left shoulder pain ,only a couple of bad night sweats and rashes on both my palms on my hands. (my Dr. said usually the rashes are on the bottoms of feet. I was blown off a year before DX because of the shoulder pain. Dr said I probably hurt my neck. Finally, i couldn't take it anymore and was sent to an orthopedist, who did a xray of my shoulder and saw a large shadow, which prompted a chest xray and there it was....a large mediastinal mass. Did the biopsy thing....then 9 months of chemo followed by 6 weeks of radiation. What a nightmare the radiation was....I have had some health issues since all of that. In 2001 I had a baby and went into congestive heart failure due to undiagnosed mitral valve regurgitation. I was asymptomatic until i got pregnant. Yes, damage to my heart from the radiation treatment. I take meds to control it and its been fine. I also have SOB and a ton of scarring on my lungs also from the RADS. My normal chest xrays are not normal looking, it looks like I have TB, but I don't. I have hypothyroidism and take synthroid, also from the RADS. And now a lump was found in my right breast and it is being biopsied tomorrow. Trying to stay positive but it's hard. It's not a good sign when the radiologist asked me who my oncologist is. Didn't mean to tell my whole story,,,,,it just came out! :) good luck to everyone!

    Biopsy
    Hi Deb.

    Really sorry to hear your long story. I do hope that your baby is OK. You did not say otherwise. He/she is your future. I can say that as an old guy, much older than you, who has 3 of my own - now with 3 grandkids.

    What I wanted to tell you is, good luck with your biopsy tomorrow. I'm praying for your test and I know that we are all wishing you the best results. You didn't choose this path, but you've got to run the race and do your best to be there long term for your family.

    Good luck,
    Tom (DLBCL-4-7/10)
  • Deb17910
    Deb17910 Member Posts: 12
    Chris17 said:

    HL symptoms
    You have been through so much, i wish you well and will keep good thoughts for you on the results, this website is for what you just did, you told your story, which i believe is theraputic, you need to be able to discuss what ever is on your mind, theres a lot of nice people here who are understanding and can relate to what you have been through so please dont feel bad about it.Keep in touch and let us know the results, good luck to you!
    Chris (FNHL stage3)4-08 in remission

    Thank you so much for the
    Thank you so much for the support....It means alot. My biopsy has been postponed until Nov 4th due to me having contracted conjuntivitis! It never ends!! LOL. Will keep in touch. God Bless
  • COBRA666
    COBRA666 Member Posts: 2,401 Member
    Deb17910 said:

    Thank you so much for the
    Thank you so much for the support....It means alot. My biopsy has been postponed until Nov 4th due to me having contracted conjuntivitis! It never ends!! LOL. Will keep in touch. God Bless

    Behind you all the way
    Debbie,
    we are behind you all the way. We run into those postponements all the time and it gets to you sometimes. hang in there things will get better. John (FNHL-1-4A-5/10) REMISSION
  • cathyp
    cathyp Member Posts: 376 Member
    Deb17910 said:

    HL symptoms
    Hi...I was diagnosed in 1994 at age 31 with HL. My symptoms were left shoulder pain ,only a couple of bad night sweats and rashes on both my palms on my hands. (my Dr. said usually the rashes are on the bottoms of feet. I was blown off a year before DX because of the shoulder pain. Dr said I probably hurt my neck. Finally, i couldn't take it anymore and was sent to an orthopedist, who did a xray of my shoulder and saw a large shadow, which prompted a chest xray and there it was....a large mediastinal mass. Did the biopsy thing....then 9 months of chemo followed by 6 weeks of radiation. What a nightmare the radiation was....I have had some health issues since all of that. In 2001 I had a baby and went into congestive heart failure due to undiagnosed mitral valve regurgitation. I was asymptomatic until i got pregnant. Yes, damage to my heart from the radiation treatment. I take meds to control it and its been fine. I also have SOB and a ton of scarring on my lungs also from the RADS. My normal chest xrays are not normal looking, it looks like I have TB, but I don't. I have hypothyroidism and take synthroid, also from the RADS. And now a lump was found in my right breast and it is being biopsied tomorrow. Trying to stay positive but it's hard. It's not a good sign when the radiologist asked me who my oncologist is. Didn't mean to tell my whole story,,,,,it just came out! :) good luck to everyone!

    HL Survivor
    Deb,

    I too had HL in 1989 and 1994. I had Rads the first time and ABVD the second. I have hypothroidism, mitro valve regurgitation and augmentation of the normal blunting, whatever that means for the heart! I was dx'd w/Invasive Ductual Carcinoma in 2008 and had a double mastectomy, no other treatment, can't have radiation again. This all started when I was 29, I am now 50 and had 2 girls after each treatment (they are 14 and 17).

    I wish you the best of luck w/your biopsy. I do know how you feel. Hopefully, they are being overly cautious and all will be ok. (I had wanted to do a prophylactic mastectomy before I got the BC dx, I just didn't push hard enough.)

    It seems the further we get from our initial dx, the more complications from therapy crop up. It's a balancing act to be grateful for all these years and now knowing our health is so complicated from the long term effects of treatment.

    Sending positive thoughts your way,
    Cathy

    HD 1989 - Rads
    HD 1994 - ABVD
    IDC, BC 2008 - DMX