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Just diagnosed at 58

stell27
Posts: 15
Joined: Jun 2010

Hi everyone, I found a lump in my upper thigh/groin area and waited a few weeks to check it out. Never thought it would be cancer, but I had been losing some weight so checked it out. First I had an MRI of the pelvis and groin and it just showed an enlarged lymph node. So the whole lymph node was removed. Next day was told it was follicular B cell lymphoma grade 1-2. Went to oncologist and had a bone marrow (is it always done without sedation? ouch)and sent for a PET scan. She ordered it without contrast, is that normal also? Anyway, I guess I am a lucky one compared to a lot of you, the bone marrow and PET were normal. I am also experiencing some night sweats. So I do have 'B' symptoms. I am very new to this and it is scary. The dr. said she would recommend that I have radiation at the site of the removed lymph node. I am going for a second opinion. Well that is my story. Does anyone else have a similar story? If so, what were your recommedations. And is there anything I should ask the second opinion Dr.? I have my appointment this Wed.I am 58 years young and has always been the caretaker for everyone. It is so hard for me to be the one with an issue. I guess that is how anyone feels when they hear the word cancer. Is this a common age? Thanks in advance.

COBRA666's picture
COBRA666
Posts: 2413
Joined: May 2010

First of all get that second opinion. I am 61 and diagnosed this past april with stage 4 follicular.I do not have any of the b symtoms. Our age group is about the right time when people are diagnosed it seems. They use 60 as the medium age. I had a bone marrow biopsy but had local anesthetic. still felt the pressure. Had a pet scan with contrast. Its really the only way they can see if there are other active cells. do not let them play with this stuff. My first diagnosis only found it in my abdomen. It was the pet scan that found it in very small areas (groin,shoulder). From what I hear and read it is very treatable, but not cureable with todays technology. I have been looking on the computer for any updates. If anyone out there has any update please let us know. take care, john
Be careful with some of these sites you look at, not sure how scientific they are and sometimes contradict the last site you read. That sometimes is really scary to me.

kayebadoe's picture
kayebadoe
Posts: 81
Joined: May 2010

59 here. Stage 2. funny thing is that my Dr didn't do a bone marrow,said the treatment was the same. Do you have an auto immune disease? They say that most with follicular do. I have scleraderma/lupus. I understand about being the caretaker. Thats me in a nutshell. My husband has always been the one with health issues. Now its me and its hard to have someone take care of me, hard for him too, if you know what I mean. I'm not used to having my sister (75) and my mother (88) do my housework (it kills me) I am used to doing everything for myself and never ask for help. Its something we have to get used to. When you start chemo, you will understand what I mean.

stell27
Posts: 15
Joined: Jun 2010

It is funny that you ask if I have an auto immune disease. For the past at least 10 years, my blood reports have shown that I have low IGG levels. Have been monitored with that for years by just watching and the dr. said that as long as I was not symtomatic there is nothing to do. I never get sick or flu's or colds much so they just ignored it. About 5 years ago, my muscles started to seem to be wasting and went everywhere to get that checked and I was told I had chronic myopathy and to try to just exercise. I got a little weaker from it but nothing to change my life. Still the caretaker for husband, children grandchildren and friends. They would all come to me. So I dont know if I really do have an immune issue. I asked the dr. so far about the low immune blood tests since the diagnosis of cancer and they seem to poo poo it because i have no symptoms. You say you are stage 2, where is your cancer and how is it affecting you now that you need help? Are you on chemo already? So far the first oncologist is recomending 6 week radiation in the groin area, but I have a second opinion in a few days so we'll see. When I had the PET scan I was givien the injection but nothing to drink, anyone know why that would be? Is that normal for lymphoma? I would think that then they might miss something in the organs or intestines? Who knows,so upsetting that every dr. does things different. Thanks cobra and kaye for responding.

yesyes2
Posts: 592
Joined: Jul 2009

Hi Stell27,
I have been dealing with a very rare type of NHL since Dec 2007 and just recently finished 6 cycles of RCHOP and am in CR at this time. Fingers crossed I stay there. My lymphoma was agressive both B ant T cell. I have had auto immune disease for over 24 years and my NHL was caused by my immuno-supressing drugs for my RA.

When I have my PET/CT scans I only receive the radio active sugar injection. I also have CT scans of chest, stomach and pelvis as a separate exam. That is when I have to drink the contrast. I think some hospitals combine both into one exam but ours does not.

I think it's a good idea to get more than one opinion on treatment. A good question to ask the Onc is what will be your risk of lymphodema to your leg with radiation to your groin area after lymphnode surgery. I don't mean to alarm you in any way but that would be a real concern for me.

Sorry this reply is so long. Best to you, I will be thinking of you.
Leslie

onlytoday's picture
onlytoday
Posts: 610
Joined: Jun 2010

Brand new dx at 58 Low grade follicular b cell. Not even staged yet. Go to my hemotologist Monday and getting a second opinion on Thursday! I'm really shocked with this whole thing and keep thinking I'm having a nightmare and I'll wake up soon...

Trying to stay very positive and am very determined to beat it. Concerned about treatment and side effects and how that will effect daily life like work etc. I wonder if disability is a must?What did you all do about that? I think it is in my ab area but won't know until after my appts.

I am looking forward to not being exhausted (anemia) and not having pain in the abs an ribs.

And I will add that the tx today is sooooo very different than years ago. 47 years ago my sister was 16 and had hodgkins disease. They practically fried her but stopped the cancer, it never returned. She has passed but not from cancer.

We've come a long way baby!! I like to think that my sister's sacrifice helps us all now.

stell27
Posts: 15
Joined: Jun 2010

Mine is also low grade follicual b cell. Just curious, how were you diagnosed? Mine was a lump in the groin. I have to wait about a month after surgery to start my radiation in the groin area, that is the recommedation. So far two opinions.

I feel like you, like I want to wake up from this nightmare.

onlytoday's picture
onlytoday
Posts: 610
Joined: Jun 2010

I had just about all of me checked because I felt sick since December and all thru the Spring no one could figure out what it was.I had vague stomach discomfort, felt sick and finally became anemic. Finally had what I thought was a gallbladder attack (it wasn't) but my pc ordered a cat scan of my abs. The tech made an error and also tested my pelvis and they found a swollen lymph node. That' how they found it. Thank God the tech made that error or I might still be wondering..

I read somewhere that it is very common to find it by mistake. Interesting.

Did you start your radiation yet?

hilde451's picture
hilde451
Posts: 229
Joined: Oct 2009

I was 60 also when I was diagnosed. And had surgery to remove a gland on my neck and then had 20 radiation treatment. After that I was home free for almost 5 years.
Then I relapsed, and was diagnosed with follicular lymphoma stage 4.
Then had 8 R-Chop. and two rituxin and then the zevalin.
So now I am feeling ok. I have my issues with fatigue. But over all I am doing ok. I wish you the best. Hilde

stell27
Posts: 15
Joined: Jun 2010

I will start radiation sometime the beginnig of July. I had surgery on May 25th so June 25th will be a month. The dr. suggessted to wait till the groin area healed some before starting. I do have a third opinion on the 29th so I may wait till after that opinion just to get three for three. I just hope waiting for 6 weeks in not too long. Does anyone how long is too long to wait for radiation after node removal???

kayebadoe's picture
kayebadoe
Posts: 81
Joined: May 2010

Follicular is very slow growing and if they removed the tumor, it should be ok to wait. My Tumors are in my lower abdomin. I just had my second round of chemo on thursday (10th) and was a little tired and lazy today. Have to say the prednisone is kicking my ***.

forme's picture
forme
Posts: 1162
Joined: Aug 2010

Hi Stell27
I was hoping you could tell me about your pet scan. You said it was normal. Did it show any metabolic activity or none. I am still trying to sort out this lymphoma mess and wonder how many people have a normal petscan. Thanks so much..

onlytoday's picture
onlytoday
Posts: 610
Joined: Jun 2010

Hi,

I finally was diagnosed with Stage 4 marginal zone lymphoma. The pet scan only showed active cells in the groin where the lymph node had been. It is in my bone marrow. After 3 opinions (!!) I am receiving Rituxan only for 4 weeks to see if that gets my numbers where they should be and gets me into remission. Hope that helps.

How are you doing on your journey?

catwink22's picture
catwink22
Posts: 281
Joined: Sep 2009

Hi Today!
I was diagnosed with Follicular Lymphoma Stage 3, grade 2. I did watch and wait for 6 months, but my 2nd PET scan came back with a lot of increased intensity in all my lymph nodes and double intensity on a spot on my hip. That is when my onc put me in treatment. I had 4 treatments, once a week of Rituxan only (no chemo or radiation). I had the last treatment in the middle of April and my new PET scan in Aug showed everything but one little node under my right arm is GONE!! :>) I am starting another round of 4 weekly treatments in Oct, as a maintenance, but I am hoping it will kick the rest of the lymphoma and keep it at bay for a long time. I am scheduled for 2 more maintenance treatments in Apr & Oct of 2011. I hope and pray that you get great results also! It's one less blow to have to deal with if you don't have to have chemo or radiation. I wish you the best on your journey!
Cat

yesyes2
Posts: 592
Joined: Jul 2009

Cat, It's so good to hear from you. I'm glad that the Rituxan has been working for you. Hope by your next scan that everything is all clear.
Leslie

hilde451's picture
hilde451
Posts: 229
Joined: Oct 2009

My name is Hilde, I have just turned 65. I was diagnosed in 04, I had a swelling in my neck
on the left side. Plus had a swelling inside my cheek.
I was put on antibiotics for a while. But to no avail.
then they did surgery and took the lump out and in my cheek also.
I did 20 radiation treatments. Then I was home free for almost 5 years. Then it came back with a vengence. I turned up with Follicular Non-Hodgkins Lymphoma stage 4, it was in my bone marrow.
I did 8 treatments of chemo last year and then December 23, I did a treatment called Zevalin. So had my cat scan in March and it was good.
Tomorrow I see my Oncologist for the first time in 6 month. See what he has on his mind , plus I have some questions.
I hope you get your second opinion and ask questions. Always be involved in your treatment.
I wish you well and good luck.
Hilde

vinny59's picture
vinny59
Posts: 1032
Joined: Nov 2006

Hey Hilde it's me again, Wow I had Head and Neck cancer 3 years ago, Tumor removed on my left neck, did radiation treatments with the mask and chemo,I was feeling dizzy and my Onc had me do a P.E.T. Scan and there it was........... did they suggest any radiation with the Non-Hodgkin's?????

RITZ56
Posts: 2
Joined: Sep 2010

My husband is 56 was diagnosed recently with follicular lymphoma. He also has Crohns which he was diagnosed with 3 years ago.Crohns is in the auto immune family of diseases. The past three years have been interesting to say the least. He has never been sick up until the 3 years ago. He seems to be doing ok with his rchop treatments for his Lymphoma. He is on treatment #2 today. We both continue to work. Our support sysytem has dwindled, people are busy I guess. I have battled with that.Getting a second opinion on most of these things helps a lot. I wish you well with everything.

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