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Newly Diagnosed Hodgkins Stage 3 - Scared

ANJBerg
Posts: 2
Joined: Dec 2005

The day before Thanksgiving I was diagnosed with Stage 3 Hodgkins. It was found by a harmless lump on my neck, and after CT and PET scans we found that it had spread to my chest and abdomen.

At this point no organs have been infected, and I am scheduled to start ABVD treatment on Jan. 4 (6-8 Cycles). At this point the anticipation of starting chemo is overwhelming me and I cannot focus on anything but this. I am extremely scared, not to go through the treatment, but that the treatment will not cure me or that it will spread to other parts of my body. Everyone says that this is a normal part of the experience, but I am very down and not myself since I found out all of this news. I am 27 years old and was always healthy before this.

Since I have not started treatment yet, I feel as though every little ache and pain is associated with the Hodgkins, and most recently my throat has been sore for about a week. I consulted my primary care doctor and he did not treat me for the soreness, instead he treated me for depression, which was another topic I brought up to him while at my appt.

I am just rambling on at this point, but I am a scared newly diagnosed patient that is looking for the support of other people that have been through this and experienced what I am feeling now. Any help or words of encouragement would be greatly appreciated.

Thank you for taking the time to read.

Krisse
Posts: 2
Joined: Sep 2005

I just finished my 6 cycles of chemo (ABVD) in October, and I am currently 'cancer free'. I remember how horrible it felt when I first heard about the diagnosis (at that point just that I had Hodgkin's Disease, later determined to be stage 2). I am sorry to hear that you have to wait for so long before starting treatment, it took only a few weeks for me. In between the diagnosis and starting chemo I went through the bone marrow test, a port placement, and a PET scan, so I felt like I was just running from one place to the next.
Although I was very scared, I grabbed on to the 'good' things, like according to my doctor "if you had to choose a cancer this is the one", and to the fact that there is a treatment for it that has been found effective.
As hard as it sounds, try to re-direct your thoughts to getting better, decide that you are going to fight this disease.
I also spoke about my diagnosis and feelings to everyone and anyone who would listen, that seemed to help. My family, friends and co-workers have all been very supportive, and I think it helped a lot that I was very open about everything from the beginning.
Having cancer does change you, so don't feel bad about 'not being yourself'. I hope some of this helps, hang in there!

AlloMan
Posts: 47
Joined: Jul 2003

I had my biopsy taken the day after Thanksgiving in 2000. The "bad news" was a relief in a way because I had been seriously ill for months and no one had any answers. I was staged at 4B.

The anticipation is the worst. Focus on the here and now, not what may or may not happen tomorrow. Take one day at a time and hope for the best. It's easy to think about all the bad things that might happen, but it's all wasted time and energy. If you can, reach out to others while you're in treatment. Sharing stories is a good way to blow off some steam. You'll meet some amazing people along the way (fellow patients, caregivers, nurses, Docs). Helping others will give you power when you feel like you're powerless.

Chemo affects different people differently. You may hear many horror stories, but that doesn't mean it'll happen to you. I had two issues that came as a bit of a surprise. The nausea wasn't too bad, but the heart burn was an issue. Anti-nausea meds can make you constipated so keep as hydrated or possible, or chemo really will be a pain in the butt.

My sister suggested I keep a journal while undergoing chemo. I didn't, figuring I wouldn't want to remember such a negative experience. But I wish I did. You should give it a try.

ANJBerg
Posts: 2
Joined: Dec 2005

I really appreciate your words about your experience. I am scheduled for my first infusion tomorrow of ABVD. Not sure if I mentioned I was staged at 3A, although recently I have been losing weight, which may cause the staging to go to 3B. What scares me the most is another node has appeared on the opposite side of my neck, which has been growing at a fairly rapid pace (last week or so). I spoke to the nurses and they said well we are starting treatment to take care of it, but that doesn't settle my stomach at night, since I am worrying that others are growing and that each day takes me further away from being a success story.

Everyone mentions to stay positive through all of this, but I gotta tell you, its the HARDEST thing to do when you feel new lumps or all the other feelings in your body.

Looking forward to chemo tomorrow, and hope it works for me.

Anyone else ever had a new lump appear as they waiting to start treatment?

Anyone else with Hodgkins have neck/shoulder soreness?

Heatherjb
Posts: 27
Joined: Feb 2004

I was 29 when I was diagnosed with stage 2A Hodgkins. I had 8 treatments of ABVD chemo and 26 radiation treatments. I have been cancer free now for 3 years. I know exactly what you mean about worrying about every little thing. I would say try to find something that makes you feel like you are doing something to fight the cancer. I turned to the internet to try to find as much out about the cancer and treatments as possible. I also got to the point where I was very proactive about everything the doctors were doing. I asked a lot of questions and tried to know as much as possible about what they were doing. I also talked to a lot of other people who were cancer survivors. It's nice to hear good things from people who have really been where you are at.
You will be in my prayers.
Heather

Racht's picture
Racht
Posts: 40
Joined: Nov 2005

First of all, I'm very sorry that you are going through this. I remember vividly how I felt a week before christmas last year when I was told I "probably had cancer" It was a MONTH before I knew it was the "more curable" form, aka hodgkins. I was diagnosed with stage 2bx. I only finished 6 cycles of chemo in July and that was followed by 20 straight days of radiation. I too was horrified at the thought of "where else" it might be and how quickly it would spread. I would tell you 2 things. One, do not focus or even give credence too the drs speculatives (it might be here and do that, or it could...) Even the expected side affects of treatment MAY not happen for you. Only look at what is FACT, keep your mind focused every positive thing that you have (do you have supportive friends? family? you've been diagnosed, now you can get the care you need,) no matter how small, look at those things and think on those.
I will be thinking of and praying for you. More than anything, peoples prayers and knowing I could trust the One who made me, no matter WHAT happened, got me through...feel free and write anytime. Racht

jodieluvs2fish's picture
jodieluvs2fish
Posts: 2
Joined: Dec 2005

hello anjberg
I too have been recently diagnoised December 16th ,2005 still awaiting the first oncology appointment after a biosy finding two large tumors on my heart..... I am scared and really lost as to what will come next
Jodie in washington state

kiren
Posts: 40
Joined: Jul 2004

HI. I am Hodgkins stage 11B, 7yrs survivor. I was 24 yrs old when I got diagnosed with this cancer. Its normal to be scared but don't let it bother you too much. The positive thing about HD is that it is very curable meaning once its gone it probably won't ever come back. So try to fight it as aggressively as possible and focus on your health. I was scared of chemo ( I recieved 6cycles of ABVD)but it didn't turn out as bad, first three cycles I didn't feel any bad side effect and my lump had shrunk considerably, my pain was gone. Try to get as much information as possible, thats what I did when I felt depressed. I would research on the net and ask questions from my doctors. I think knowledge of what you are dealing with helps greatly in fighting off all the fears. Good luck and focus on getting better.

Demi1
Posts: 4
Joined: Oct 2004

Hi

I am really sorry about your news.

I was diagnosed with stage IIA in 2004, I had neck and shoulder pains, particularly when I was in bed and especially if I had a drink that night. I had 3 rounds of ABVD and some radiation, I have been clear for just over a year, it is tough but you know you have to get through it, so you do.

I just thought I would bring your attention to another website, this is a much more active website with lots of members and therefore more active chat, I didn't find it until after my treatment had finished but would have found it useful while I was going through chemo etc.

http://forums.webmagic.com/ubbthreads/postlist.php?Cat=&Board=UBB1

Good luck with it all.

judy60
Posts: 1
Joined: Jul 2005

I also was diagnosed with stage 3 hodgkins in Febuary actually on valentines weekend. I went through the ABVD treatment I Had 6 cycles and 15 treatments of radiation. I finished the whole treatment on holloween. I just went to the Dr. for my 3 month check-up and got a clean bill of health. I was very scared when I was first told. I had the support of the nurses at the chemo center and the support of my husband and family. I am 45 yrs old and hodgkins isnt something you see at my age. I also read books on the subject and that seemed to help. I will kep you in my thoughts and prayers. I no you will be fine try to keep your spirts up and I no you to can beat this.

starkissedlady's picture
starkissedlady
Posts: 1
Joined: Dec 2005

My Dear ANJBerg,
The entire experience is frightening from the moment you find the lump isn't it. But slowly, step by step each of us walk down the road to becomming a survivor. God willing. Its ok to be afraid, you wouldn't be human if you wern't. Chemo isn't an easy thing to go through. But from my own personal experience. Its tough but I'm getting through it. There is medicine for the tummy to make it feel better. There are things that you can do for the other side effects also, and I pray and meditate and take long hot baths with soothing music. Things that make me feel better. Its a time to take care of yourself, for yourself. Your so young. Think good thoughts, surround yourself with positive people, and if you believe turn to the Lord with all your heart and soul. Dont be afraid to ask for his help, his strength, his love through this hard time. I was diagnosed on Nov 4, 2005 with hodgkins lymphomia stage 2 neck and chest. I have had 4 cycles of chemo now. Radiation to follow daily for 1 month. Jesus has and will get me through all this. If I can help you, please let me now ok? Dee

SurvivorMarie
Posts: 1
Joined: Oct 2005

Be brave. (Easier said than done... I know.) I am a 7+ year survivor of the most advanced stages and highest letters of Hodgkin's Lymphoma. (Believe it or not I've forgotten the letter, but it was stage IV). I had 6 tumors... including one enormous mass on my chest, two on either side of my neck, one under my armpit, and two below my diaphram. I had false asthema, which my liver was trying to fight but couldn't. It swelled to 3 times the normal size. I had night sweats and night frights. I started my ABVD chemo four days after diagnosis because they were so scared about how advanced it was. I was 19.

I was always healthy before the cancer too. Afterwards, it took 5 years for me to stop catching everyone elses' colds. The aches and pains that you are experiencing now may in fact continued for years after you are completely in remission... which I have no doubt about. I can't count the number of times I've read... "if you're going to get a cancer, this is the best one to get". While it wasn't true 25 years ago, treatments were designed to CURE, not just treat, this cancer. You are on the road to remission. I had a nurse tell me one as she was pumping me full of chemo... imagine the location of each and every tumor ... now imagine these drugs going right to the location and knocking the cancer out completely ... now imagine it gone. Anyways, the tumors can push and pull on nerves, which take a long time to heal. I had one tumor that made my pinky and ring finger on my right hand go numb!!! It took 6 months after chemo for the numbness to disappear.

Be prepared that you may not feel like yourself for a long time. I had to get on antidepressants as well. Be careful with those too. As soon as chemo ended, you might react differently to the medication. I did... really bad side effects.

A few pieces of advice:

You KNOW when your body isn't normal. Listen to it.

Also, I found the best thing to do was to find a distraction that doesn't warrant consistent attention... a jigsaw puzzle, a crossword puzzle, a movie.

Stay as active as you can... that is take some walks, but don't run a marathon!!!

Be Brave. The treatment will end soon and you will be cured!

arica
Posts: 12
Joined: Aug 2005

hi my name is arica and i have been on this site before. i am 22 and unfortunaly have hd for the 3rd time. i feel great and did well with my treatment. i was not very sick at all. i really hated losing my hair. i will go for another transplant on jan 31. i am hopeful though that it will work this time. i am having an unrelated donor transplant. a 10 out of 10. please know i have been through a great deal for only being 19. hodgkins is very annoying and can be controlled if not cured. i was 4b sick for about 7 mos before dx. you will do fine. one thing i have is a good attitude. you have to. i just stopped by this site tonite to see if anything "new" has been going on. i will tell you there is another site called the hdlist.org many many young and middle aged people on there. i'll email you the site i think you may find a lot more comfort there.only because people are constantly on. and you can read all of the stories or only the ones addressed to you. hang in there you will do fine. it of course is always a downer when you find out you have the C word. down right sucks!!! you will get through this keep you head up and take one day at a time. talk to you soon

arica 3 x cancer survivor
from ny

arica
Posts: 12
Joined: Aug 2005

hi again just wanted to give you the address to the hodgkin site. see you there. hdlist@hodgkinsdisease.org

arica

leelabell
Posts: 1
Joined: Jul 2005

Hello, it was only 10 months ago I walked in your shoes. Im sure by now you have started treatment. Dont be afraid to tell the Dr. any side effects you have, get your questions answered. There is so much medication for side effects that you should be ok. There will be days that are so so but stay positive. Stay strong and remember you are a survivor. Each day we are here we are survivors and always keep in mind that you have cancer... Cancer does not have you. Dont be afraid to accept help from people and listen to your body. Rest when it tells you to, this will help and if you have any questions you can email me leelabell1@aol.com
Good Luck and Stay Positive.

Aeja
Posts: 1
Joined: Mar 2006

I too had Hodgkin's Disease in 1992! I was only 16 years old and really had no idea WHAT was going on at that time. I was diagnosed with Stage 3A.

I went through chemo for 6 months (no radiation) and am thankful to say that I have been cancer free for 14 years! I just had my first child this past year as well!

I just wanted to let you know ANJBerg that you can get through this and have a completely normal life afterwards. Chemo isn't easy, but humour and family got me through the rough times. You really DO change as a person when you go through something like this, but it's a change for the better and you will cherish everything that much more. (especially the good people around you)

Stand strong and take one day at a time :)

My thoughts and prayers are with you.

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