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Diagnosed last night - in shock

6browns
Posts: 15
Joined: Nov 2004

Last night my husband of nearly 16 years came home and told me that the "so-called nothing biopsy" (done about 10 days ago) from the lymph nodes in his neck showed that he had hodgkin's disease. His doctor immediately sent him for a PET scan, several xrays of his chest and abdomen and maybe some others too. He was in too much shock to remember everything that was done. Meanwhile today some results came back showing possible tumors(not sure what they're called) in his abdomen. At first they thought he might be stage 1 but now they seem to be leaning toward stage 2 with this possible sighting.

Frankly we are in shock. The man has never been sick and feels and looks just fine. In fact if his doctor hadn't insisted on the biopsy we never would have known he was sick (neither the needle aspiration nor the blood work showed anything.)

He is being seen at Mass General (which is where his PCP is - and it seems to have a good reputation.) On monday we are going to the oncologist. How or why or when do you decide to get a second opinion?

I've done some preliminary reading for both us (during the last 20 hours) as he is unable to bring himself to the computer, yet. I'm very worried about him as he didn't sleep practically at all last night (I know -- I watched him).

I think I'm asking for some reassurance from the community at large this this feeling of being totally overwhelmed and confused is OK. I am hoping that as he is staged (not sure if I'm using these words right) and we have some treatment plans, that he will feel more secure.

Would anyone be willing to share their experiences, etc.

Thanks very much -- signed a very, very worried and scared spouse.

pickles123
Posts: 47
Joined: Jun 2004

Hi,

I finished chemotherapy for Hodgkins back in March. Please email me at this site if you have any questions or I could even call you and let you know what to expect or if you just need someone to understand. Please dont hesitate. I know how scary it is. Also please remember that they just tell you all the side effects at first; it doesnt mean you will have them all.

Even though I liked the first onco that I met I decided to go with my second onco simply because the hospital was linked with a university, my doctor specifically studied and did research in Hodgkins, and had treated it a million and one times, also they had a big staff who had seen all kinds of problems

Pic

6browns
Posts: 15
Joined: Nov 2004

Hi Pickles123,
First thanks for responding soo quickly. I feel silly but I have no idea how to mail you a private message? Can you walk me through it.

Thanks very much!

Maur1966
Posts: 23
Joined: Oct 2004

Please take a deep breath.... My name is Maureen, I'm married 15 years and 37 yrs of age. I was recently diagnosed with Hodgkins stage 3 back on Sept. 14, 2004. I am currently going through chemotherapy and have had 2 of the 12 doses needed. Please email me. I understand the anxiety, the sleepless nights and how you both must be feeling. My husband felt exactly the same way you are feeling and only a few mos back. Now we both know what we are facing and are dealing with it. Hang in there...talking about it 1st hand is best. Be careful what you read, as it can drive you crazy with fear. It is better to talk to the oncologists. This is NOT a death sentence. That is how I felt initially. Doctors basically expect you to get second opinions and understand that. Schedule both together. I had a second opinion. I was able to go to a major cancer center and also a local center. Both doctors agreed upon the same treatment of 12 doses of chemo (ABVD) I am a nurse, so of course everything I know and everything I read was always considering the worst. Again, talk to your doctor, as only they know the exact staging and expectations. Write down all of your questions you want to ask. It is best that both of you go so that you don't need to second guess anything said by the doctor. My parents were even involved in my visits. It made them feel better and most doctors do not have a problem with that. I would be happy to share my experience. Rest assure, you will get through this uncertain time. Hodgkins has a high remission and even "cure" rate. Again, please email me. maur1026@yahoo.com Take a deep breath and know that you have a rough road ahead...but you have an optimistic outcome. :) Maureen

KathySue1955
Posts: 6
Joined: Feb 2004

You have probably already been told that Hodgkin's is one of the most curable cancers. so you and your husband should take comfort in that. Also it is good that he didn't have any symptoms and that his blood work was normal. They are indicators of a probable good outcome. Stage 2 is not terribly advanced for Hodgkin's. Most people are at least stage 2 when they are diagnosed.

Some people may disagree with this, but I think it is wise to obtain a second opinion right from the outset. Good physicians never mind a second opinion. My son has battled Hodgkin's for 18 months. (He was stage 4 at diagnosis, with chest, lung, spleen, and sacrum involvement.) His first oncologist came highly recommended by our PCP, but in retrospect he made some big mistakes which may have cost my son. (For instance, he didn't do scans until treatment was over (the cancer had spread), and he didn't monitor my son's blood work properly. There were indicators in his blood work that the cancer was still advancing, which the oncologist totally missed.) Now my son is being treated at Medical College of Virginia, but we have also sought opinions from Johns Hopkins and Sloan Kettering. We got wonderful advice on treatment from Sloan that MCV is instituting. (You can't go wrong with Sloan. They're the best, but I have heard great things about Dana Farber in Boston too.)

I think you and your husband will feel better once he is staged and a treatment plan is in place. The waiting is the absolutely worst part of this whole process.

Feel free to e-mail me at medmom1@aol.com. After 18 months, four different chemos, and a stem cell transplant, we've seen just about everything Hodgkin's has to throw at you!

Wishing your husband the best,

Kathy

pickles123
Posts: 47
Joined: Jun 2004

Hi,

When you first sign in on the righthand side there is a link that should say no new mail messages. If that doesn't work e-mail me at montyburns_5@yahoo.com.

It is also a good idea to bring a tape recorder to all your appointments. That way you can pay attention to your doctor but still replay if you need to go over it again.

Hoping to hear from you soon!

Hugs, Pic

stepet
Posts: 69
Joined: Dec 2003

Hi, My name is Sandi I was diagnosed with Hodgkins 1a in December of 2002. Yes it is a major blow, but like everyone else has said it does have a great cure rate. I live in Maine and went to an oncologist here, and then went to an oncologist at the Mass General. They both had the same treatment in mind, however they did give me the option of having radiation only or chemo and radiation. I opted for just the radiation due to the fact that my health was otherwise great and I was 1a. They did tell me that if I was a male of the same age{36) at the time they would treat me more aggressively I guess it progresses faster in men. I had a small army of people with me when I went for my consult in Boston. My sister, husband, and two close friends one of whom was a nurse and my sister has a bio degree. It's good to have people who can ask the right questions and get to the heart of things. Like that your husband and you are in shock and it helps to have a lot of ears. Good luck and stay positive a good sense of humor is the best medecine! Keep in touch and let us know how you two are doing. Sandi

6browns
Posts: 15
Joined: Nov 2004

Thank you all for all of your kind words and suggestions. My husband has read all the responses and seems a bit brighter. We will be bringing a tape recorder to our first meeting with the oncologist on Monday. If we aren't too overwhelmed, I will post an update at that time. Again, many thanks!

Kind regards,
Lisa

diane31nh
Posts: 2
Joined: Nov 2002

i'm a 33 yr old female i was first diagnosed when i was 29 and again when i turned 32, it was the worst possible thing that could happen to me, there is a lot of cancer that runs through my family but not this one, so i was scared to death about what was going to happen to me. i did go to Brigham and womens for a stem cell transplant and currently see an excellent dr at dana faber if you have any questions you can email me dharding@metrocast.net i feel if i can get though this twice anyone can do it. it has been 18 months since my transplant and i keep my fingers crossed everyday

6browns
Posts: 15
Joined: Nov 2004

Hi,

Just wanted to give a quick update on today's trip to the doctor.

Evidentally A has not had a PET scan (though he thought he did -- clearly the stress and shock can take a toll on a person) so he needs a PET scan and two other tests, one measures how deeply you breathe (I think) and one sounds like an electrocardigram with leads and stuff.

After we get those results then we go back and have another chat about what to do. Preliminarily the doctor didn't seem to think that radiation was required and was suggesting just chemo. Is this common?

Overall the doctor was more positive than we expected. The only negative we detected was more from the standpoint of recurrence -- he seemed very confident that the chemo could get rid of what was in A's body right now.

Opinions? Similar or different experiences?

Again, many thanks to everyone for their support. I am amazed by the warmth and helpfulness of everyone who has responded.

Best,
Lisa

lhodnet
Posts: 62
Joined: May 2004

Lisa - you might want to ask about just chemo and not radiation - it was explained to me that radiation gets rid of the possible residual cells that could be lurking in the body after chemo and helps alter the DNA in the bad cells so that if/when they reproduce, they either explode or die upon reproduction.

That is just what my oncologist/radiologist said, so just ask around and check.

--Lisa

bc99
Posts: 15
Joined: Mar 2004

Hi,

It sounds like you are on the right track. If your insurance will cover it (my mom's insurance covered 80%) or if you can afford it, I would consider getting a second opinion on treatment options, just to make sure your husband is getting the best treatment possible. My mom (age 54) has been in remission from stage IV Hodgkin's for a year now. She was treated with 6 months of chemo (ABVD) and no radiaton. When she was initially diagnosed, we sought a second opinion at Dana-Farber and the doctor there agreed with the chemo-only treatment that my mom's doctor recommended. Everyone's situation is different though, so definitely ask lots of questions and consider getting a second opinion on treatment if you are unsure about what your husband's doctor is recommending. All of my mom's doctors told her that if they had to be diagnosed with a type of cancer, they would want it to be Hodgkin's because the cure rate is so high. I know this is such an overwhelming time, but stay strong...my thoughts are with you both!

lhodnet
Posts: 62
Joined: May 2004

I finished chemo in August and Radiation in October - I was diagnosed 2 months after having a baby, and know this feeling of shock that you are talking about.

I went through it too, only I did sleep b/c I cried my eyes out every waking moment that I had. Once I knew what was wrong, I was able to put my arms around it and combat this stupid disease.

Honestly? I didn't get a second opinion on my biopsy and/or an oncologist. Once I met my oncologist, I was completely comfortable with him as well as we have some family friends who work with the oncology dept at my hospital and they said the dr that I had was highly regarded in the cancer community.

I was diagnosed in May with HDL stage IIBX (bulky disease) this scared me even more. I was 28 when diagnosed, 29 when finished with chemo/rad.

I went through a newer treatment called Stanford V treatment rather than the regular ABVD. If you have any questions about anything, and/or if Stanford V is offered to you as an option, please just email me through this site or post here - I check these posts frequently.

<> to you and your hubby - things will get better, I promise.

Lisa

lhodnet
Posts: 62
Joined: May 2004

I finished chemo in August and Radiation in October - I was diagnosed 2 months after having a baby, and know this feeling of shock that you are talking about.

I went through it too, only I did sleep b/c I cried my eyes out every waking moment that I had. Once I knew what was wrong, I was able to put my arms around it and combat this stupid disease.

Honestly? I didn't get a second opinion on my biopsy and/or an oncologist. Once I met my oncologist, I was completely comfortable with him as well as we have some family friends who work with the oncology dept at my hospital and they said the dr that I had was highly regarded in the cancer community.

I was diagnosed in May with HDL stage IIBX (bulky disease) this scared me even more. I was 28 when diagnosed, 29 when finished with chemo/rad.

I went through a newer treatment called Stanford V treatment rather than the regular ABVD. If you have any questions about anything, and/or if Stanford V is offered to you as an option, please just email me through this site or post here - I check these posts frequently.

hugs to you and your hubby - things will get better, I promise.

Lisa

kiren
Posts: 40
Joined: Jul 2004

I just read your message. You already have alot of warm replies. I was diagnosed with hodgkins when I was 25 and its been 6 yrs of recovery for me. I was treated with surgery at the neck clavicle area, ABVD and radiation to chest because I had cancer in my chest area too. It was stage 2B. I felt ok till the first 3 rounds of chemo but last three made me sick . But somehow I went through it all for my daughter and new born son who was born a day after my surgery. I feel better now and am hodgkins free. My nurse where I was being treated told me that if she was given a choice of having cancer she would choose hodgkins because it is the most curable one of all cancers and my doc was really aggressive in treating me, he made sure he got it all. Tell your husband to keep a postive attitude and ask lots of questions, eat whatever he likes plus fruits. I am sure he'll be fine.

JoeShmoe's picture
JoeShmoe
Posts: 4
Joined: Nov 2004

Wow, sounds very familair. I went through 3 procedures/surgeries before they finally got a biopsy & determined it was Hodgkins. I had to wait two weeks after the last surgery to heal before they could start treatment. Then they gave us a choice of Chemo treatment (not what I wanted at that point) it was ABVD or Stanford V. They give you a list of all the drugs involved, along with all the possible side effects. It was to say the least very overwhelming. My Oncologist really recommended Stanford V which is a clinical trial. Unfortunately that was the more aggressive choice, with more drugs and more possible side effects. Good side of it is it's only a 12 week program as opposed to ABVD which was 6-8 months. Me and my wife decided to go with the Stanford V. I was/am stage 3... main mass in my chest with a tumor in my spleen and neck also. I had all the tests... the worst was the bone marrow test... Although very necessary I hope I never have to do that again.
Currently I am in week #10 of 12. It has been no picnic but not quite as bad as I had first imagined. I have not been sick at all, just very achy, and tired. Depending on the drugs used each week, my fingers/hands feel tingly, and get jittery due to a steroid called Prednisone. I don't know what your husband does for a living, but I couldn't continue my job, I am too weak and get tired to fast. Not to mention that your immune system is pretty much shot so it's not good to be out anyway. This Chemotherapy treatment is pretty agressive, and it wipes out your blood counts (white, red, hemoglobin etc..)My hemoglobin count was so low a few weeks ago, they had to give me a blood transfusion (also something I did not want)after the transfusion, I really felt pretty good, it's amazing what they can do with that stuff nowadays. I had trouble sleeping also, but the Dr. prescribed Ambien and that does the job pretty good. I started to lose my hair around week 3-4, at first I was pretty shocked, I was scared to get in the shower because I thought I would come out bald. Now I have it shaved down to about nothing... it's your choice, weather you want to deal with hair everywhere or not, really it's the last of my worries now. LIke I stated I'm in week #10 so I can't comment on being cured, but as you have read "it's the most curable" Just have faith, it's a long life changing road. Any questions, or if you just want to talk.. my email is JLBBG@comcast.net
-Joe

6browns
Posts: 15
Joined: Nov 2004

Hi,

I have an update. We got the PET results. They could have been worse, right? He has Hodgkin's in his neck and I think collarbone area and two 2cm tumors(?) in his abdomen. We're bummed out about the abdomen but are taking it in stride. It's just so amazing what you take in stride when you get diagnosed...if you told us three weeks ago that we consider this pretty good news (as no major organs are impacted, etc.) I never would have believed it.

A's PCP looked at the oncology records and it looks like ABVD for six weeks. We don't know about radiation yet.

I guess this is the beginning of our journey!

One good thing has come out of this -- A has decided that he has a new charity to support! He told me he's very interested in helping with fundraising and when he's better helping others who are newly diagnosed.

I do have a couple of questions that perhaps someone can answer --

What is the significance of the A or B in terms of actually getting better?

How important is being young (under 40) verses over 40 -- A is over 50? (But he's a young 50
:-)) I remember that younger people tolerate the chemo better (usually). His PCP keeps telling him aside from the Hodgkin's he's in excellent health (I kind of want to say -- "oh, thanks a bunch for the good news buddy! But of course, I haven't! Semi-smile, semi-wink.)

Thank you all for your kind words and advice!

6browns
Posts: 15
Joined: Nov 2004

I'm such a flake...too much to think about. I meant ABVD for six months!

Maur1966
Posts: 23
Joined: Oct 2004

Hi L,
The staging of A's Hodgkins is better than mine was. I want you to know something....I am a stage 3A My spleen, liver, chest and neck were affected. After only 3 doses of ABVD, I had another ct scan last week. The results are WONDERFUL!! The spleen, liver, neck are all normal and the chest area has decreased from 7.5cm to .5cm! It was as if I never had cancer!All this after only three treatments! So, now I continue with the remaining 9 for "insurance" and will have radiation to make sure the cancer is totally kicked in the butt.I am very optimistic that my outcome will be fabulous. Keep the faith, I think it is great that A wants to help others when he is better. From what you've said in your post and from the stage, A should have no problems beating this also! As far as the "A" or "B" is concerned....the A has no symptoms, where as the B is with symptoms. They say that the A responds better, but that does not mean that someone with B would not. Keep in contact, it is great to know that A is right behind me on the road to recovery! Take Care! Maureen

JenniJ
Posts: 2
Joined: Dec 2004

I was diagnosed with stage 2 Hodgkin's Disease and recieved 12 rounds of Chemo and did not recieve any radiation, although I too, believe it is wise to get a second opinion, and ultimatlely it is your husbands choice whether or not to recieve radiation treatment based on the results of your husbands tests. I encourage him to take time in making a educated and wise decision. Both radiation and extra chemotherapy treatments have there "benefits" and drawbacks but your husband should do what is best only for him, by understanding the information fully. I wish both of you the best. I will be thinking of you often. I hope the treatment goes as smoothly as possible with the fewest side effects as possible.

Jen532
Posts: 1
Joined: Dec 2004

I am 33 years of age and I am a Hodgkin's disease survivor. I was diagnosed at age 16 with stage 2-B nodular sclerosing Hodgkin's disease. I underwent 45 radiation treatments. I heard the words "cured" by doctor about 7 years ago.

Please help your husband with a positive mental outlook. The news "you have cancer" is devistating, but it is not a death sentence. I am living proof of that. I was positive throughout my disease and treatment and still remain positive for a healthy life.

Good luck and God bless.

Jenny

6browns
Posts: 15
Joined: Nov 2004

Time for an update!

Yesterday we went to the oncologist. It turns out that A has stage 3A Hodgkins. He will be treated with ABVD starting on Friday for what will likely be six cycles.

As I type this I am remarkably calm -- I guess it's the idea that we're going to do something about the Hodgkin's that's calming both of us down. The doctor didn't think he needed a port-a-cath as he has "good veins". I think we'll see how the treatment goes and get one later if needed. Are there complications with a port-a-cath?

Unfortunately I"ve been sick and I think A has a touch of the cough now. He went to bed early and seems better today.

The weather here in Boston is not too great -- icy and cold. I'm glad our appointment was yesterday!

We are both scared but much stronger and more confident than we were three weeks ago. The shock has worn off and now we're trying to focus on getting through the treatment. He's very worried about the side-effects. I've tried to block all of that out and have focused on getting him healthy! It's so strange that someone can be so sick and feel and look so well.

Last week we were married 16 years -- I hope and pray that next year on our anniversary he will be hodgkin's free.

Thank you all for your support. Your personal experiences have been helpful, calming and inspirational for us.

Any advice you'd like to share in terms of being ready physically or emotionally for the first chemo would be great.

I will post an update after the first treatment.

uglyowl
Posts: 3
Joined: Mar 2004

I went to MGH for a second opinion. Are you seeing Dr. Takvorian. If so you got a great doctor.

I was diagnosed in February 2004 with 3A. I am now back to work and waiting for my next check up in January which will be 5 months after I finished chemo.

Good luck to you,

-Joe

6browns
Posts: 15
Joined: Nov 2004

Hi Joe,

Yes, we're patients of Dr. Tak! I hope we do as well as you have! My husband picked up all of his medication today (Friday is the first chemo). He's not as calm as he was yesterday -- first times are probably the scariest.

Anyway, thanks for your note! I wish the best of luck with your scans!

Lisa

KTCHECK
Posts: 3
Joined: Jan 2005

I was diagnosed November 2003, with stage 4b Hodgkins, just 8 weeks after the birth of my son. I too was shocked. I thought a had the flu, but nope, i got to join the club that no one wants to be a part of.
I started ABVD in November 2003, and my repeat PET scan in January 2004 was negative. I went into remission with only 5 treatments behind me. I finished all 12 treatments, and needed no radiation. I had another PET scan in November 2004, and i am blessed to be in remisison still. Another good resource is the Leukemia/Lymphoma society website. Keep the faith . God Bless Kelly

6browns
Posts: 15
Joined: Nov 2004

Time for an update!

Hi!

It's been such a long time since I last wrote -- I wanted to provide a mini-update on my husband.

My husband is going to have his fourth treatment on Friday. Overall he is doing pretty well. He opted out of a cath (no interest) and his veins are holding up (so far, so good). He counts remain OK and he hasn't needed any extra medicine to boost them. (keeping our fingers crossed).

He seems to be tolerating the ABVD pretty well, although I noticed that he was much more tired after #3 than the previous two infusions. He is more than satisfied with the care he has received so far at the General.

I've noticed that the dynamics in our family have changed as a result of the disease. Because he is less energetic, our kids are having to do more (not popular), I've also gone back to work to ensure that we have medical insurance just in case something happens to his job. These changes have caused some stress. I do feel terrible about having less patience -- but I confess I'm tired as I"m doing more on less sleep. He is also getting more focused on the disease, the treatment, the side effects, etc.

On a positive note, the lump on his neck appears to be gone (at least to me) and the doctor is pleased with his progress.

I guess this is a bit longer than I thought. I want to thank everyone again for their helpful advice. I will post again (hopefully) after we get (GOOD) results on a scan tentatively scheduled for the March timeframe.

May this year bring good health and much happiness to everyone!

Best,
Lisa

DenMorton
Posts: 3
Joined: Jan 2005

Hi,
I was diagnosed on Nov 17 and I am 56, living the good life in Maine. I have never smoked, drank very little and taken care of myself.
That night when the call came in was like a kick in chest. My wife is very strong and didn't cry until when we went in for my first treatment and seeing the chemo entering my chest was to much for her to take.
She does go with me every treatment and I like having her there for me. I also have a really strong church family that are there for me.
If you haven't seen the book CANCER A medical and Spiritual Guide by William Fintel and Gerald McDermott you should get it. It will help answer a lot of questions.
I have a great hat collection and after 3 treatment (#4 tomorrow) I am still working as an electrical engineer.
Don't forget that the doctors will take care of any pain he has but suffering is something different and you will suffer right along with him as a care giver. Freinds, family and faith will help with the suffering
God Bless you both
DenMorton

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