Hi all. I am 31 years old, married, with 3 kids. I was diagnosed with Hodgkins (via biopsy of a mass in my chest) earlier this week and quite frankly I am scared as hell. This was so unexpected as I went into the hospital with bronchitis and came out with cancer. My first appointment with the oncologist is October 4th, so at this point I don't even know what the game plan is.
I just wanted to take a moment to introduce myself and say thank you to all of you for taking the time to post your experiences here. I am already feeling a bit better now that I have some idea of what to expect. I plan on spending quite a bit of time here in the months and years ahead.
Hey familyman, my heart goes out to you & welcome, might I suggest you direct any questions to Ross as he is well known for his expertise on most of this subject.
All my strengths & know that we're here for you if you care to vent/talk/share.
April, Thanks for the welcome. At this point I don't even know what to ask. I'm sure the questions will come with time. It is nice to just listen for the time being to see what others are going thru so I know what is in store for me.
Familyman:
Welcome to supportgroups.com, sorry to read about that f88king Hodgkin's diagnosis but you're probably going to do a lot better than you think. Right now maybe you've got apocalyptic thoughts, that's understandable but not very practical. You are very unlucky to have developed Hodgkin's, it's a really very VERY rare cancer-- only about 8000 dx's each year in the United States. Compare that to over 200,000 breast cancer diagnoses, and over 220,000 lung cancer diagnoses.
So if it's so rare, why is it that most people have at least heard about it?
Because over the past several decades, no cancer has been studied more thoroughly, put through more clinical trials, or enjoyed such treatment success as Hodgkin's.
Started in 1946 when a paper was published in JAMA about a couple guys feeding nitrogen mustard-- yeah, the poison--- into the IVs of cancer patients. Of course they all died but those with blood cancers saw their astronomical lymphocyte counts go down, and they lived a little longer than expected.
The door had been opened, just a crack. Then along came Sidney Farber and viva the blood cancer revolution.
There are so many great Hodgkin's patients, caregivers and survivors on this site, ready and willing to help, just ask. I'm not one of them, a moderator only, but I'll still help however I can.
Again, welcome, Familyman. Have a great Saturday.
Ross
Hi Familyman,
Welcome to this amazing and supportive group. I am so sorry for your news. I have had a lot of people in my family lately dealing with cancer. I can only imagine how scarey it was to have heard that unexpected news. I must tell you though from my experience with just that word "cancer" that things have come along way. Yes it is scarey but they have come along way in treatment and cures. Get as much knowledge as you can tolerate and take one day at a time. You have made a great start by coming here. Stay positive and know that our prayers and thoughts are with you. If you just want someone to vent to I am here for you. Message me anytime you want.
Loving prayers being sent out your way,
Lily
Wow, I had no idea that Hodgkin's was that uncommon of a diagnosis. To be totally honest, I don't really know how I feel about it yet. I always thought that something like this would be "earth shattering", but so far that has just not been the case. I guess it is easy to say that at this point since I have not even seen an oncologist yet. It sounds like the hardest part of Hodgkin's is the treatment. I have found it a bit awkward to talk with friends and extended family the last few days. Its like they expect me to be very somber about the whole thing, and when my response is a very cheerful "Im fine, how are you doing?" they just don't seem to know how to respond.
Right now it is very easy to have a positive attitude about the whole thing. I'm just praying that I can keep that going when things actually get difficult. I have already read several posts on here where you guys talk about chemo and radiation (and the side effects) as if it were nothing more a minor inconvenience. I'm not saying you make it sound easy, but your attitudes toward the whole thing are so positive and encouraging. I just hope I can follow suit.
Familyman:
I like your resistance to those somber expectations. It’s 2010 but the word cancer still has such an enormous grip on us; it makes people say stupid things (my favorite is from Annie, a user here, whose friend started crying and said, “you were such a good friend!”) and it’s shrouded in decades of war metaphors and of anti-cancer imagery like the frail, hairless chemo patient. I would argue that, collectively, we’re all more comfortable being told of someone’s HIV diagnosis than cancer. It’s just ingrained in us to hear the word and panic and imagine our own mortality and think “my god, that guy’s fucked.”
I think you should stick with your approach and ignore, literally, those reactions. Diseases are better understood as journeys than battles, cancer maybe especially so-- I mean you can say “I’m gonna fight this and win” but, I don’t know, ask around, ask any cancer patient how closely a combination chemotherapy infusion resembles a fight- when you fight, do you sit in a recliner with port in your chest? There’s a big disconnect there. On the other hand, your approach is pro-active, it’s personal, it’s your act. A major motif around here is that cancer and treatment rob people of control over their lives, if for a short time; they feel like they’re pushed into treatment and do what they’re told. It’s totally understandable. But it’s dehumanizing and demoralizing. Try to stay on top of your decisions, try to keep a measure of control over aspects of your life. Do I think it’ll contribute to a better prognosis and actually beat back your cancer? How the hell would I know. But I think it will make you happier, day to day, even on bad days, than you might otherwise be. And that’s got value.
Hi everyone. I am 41 with 2 young kids. Found the lump in my neck around mid may. Had ultrasound and lots of blood work done. I had a fine needle biopsy last week. Pathologist said he was leaning towards hodgkin's. I have a full removal surgery on the 29th. I am actually releived that it is looking like hodgkin's rather than lymphoma A or B, because of all the research and survival rates. Since I found the first lump, I have developed 2 others. What can I expect when I see the hematologist the first time? Thanks all.
Rob-
By full removal you mean an excisional biopsy I assume, and I’m glad they’re not relying on FNA- it’s just not good enough to make a dx. These new lumps are in your neck or clavicle? Hodgkin’s is known for its orderly movement- it goes from region to region in an orderly fashion, almost never hopping around. So if your swollen nodes are where they are, and-- are you having any B symptoms like night sweats, fevers etc? it suggests it’s been caught early, although standard treatment will still probably involve chemo and radiation.
I am a few weeks ahead of you. I have had my visit with the oncologist and have been sent for tests before any treatments is started. The tests are to determine the stage of the cancer. I had a PET scan yesterday. Monday I am having a bone marrow biopsy, a ct scan of my chest (I've already had neck and abdomen), and a mugascan of the heart. Then I'll meet back with the dr and be ready to start the chemo she has said I will need. Hope this helps you see what may be in front of you. All in all, I've heard very good things about our prognosis from everyone I have told.
It sounds like my finding was pretty lucky. I have not found any lumps in my body so far and have not had any notable symptoms. I went to the ER for a severe chest cold/cough and the doc thought I might have a pulmonary embolism because I had been on a cross country flight recently. The CT he ordered did not show anything in my lungs but they found the mass in my mediastinal region. I am hopeful that the lack of symptoms indicates that they caught this early. I'm guessing that my oncologist will be ordering some of the scans you guys are talking about in the coming weeks.
Oh, and no “notable symptoms” … Did your doc prescribe antibiotics for your severe chest cold? The CT was clean in that regard right? Well a cough, caused by that mediastinal mass, is a not-uncommon early symptom in Hodgkin’s.
The doctor at urgent care prescribed some antibiotics and when I ended up in the hospital they stopped them and put me on some different (stronger??) antibiotics. Its hard to tell if my persistent cough is an actual Hodgkin's symptom because I am also a long time smoker. However, my first move once I left the hospital was to ask my primary care doc for a prescription for Chantix which I am starting on Monday. My last day as a smoker will be October 3rd.
Ah, I see. I tried Chantix. I was about a 1 and a half pack a day smoker. For me chantix was a trip; after a couple days you really do start to notice how cigarettes are having no physiological effect on you-- they're the least satisfying smokes you'll ever have. but I had some side effects-- weakness and fatigue, along with what felt like nicotine withdrawal. Ultimately I quit with the gum. Good luck.
I am a bit worried about the side effects of Chantix. The handout they give you lists so many crazy things (like mania...really), but I need this to happen now. I don't feel like I have the time to mess around with multiple attempts to quit. I want to be smoke free for several weeks before I start any treatment regiment. My doctors have already told me that Hodgkin's is not caused by smoking but that smoking will complicate my recovery.
Smoking will complicate your everything. And keep in mind that the FDA requires drug companies to list in the potential side effects every single side effect experienced by anyone in the clinical trials, even if they affected just one person one time.
However didn’t the FDA add a black box warning to chantix a couple years ago? Basically saying if you have a history of clinical depression or it runs in your family to be especially careful because of the potential for suicidal thoughts?
My wife and I reviewed the potential side effects very carefully before we decided to go with Chantix. She is going to keep a very close eye on me (and my attitude/behavior) over the next 12 weeks. We have already agreed to stop the medication immediately if she thinks there is a problem.