by funlife4me on Thu Apr 17, 2008 12:00 AM
by confused2 on Thu Apr 17, 2008 12:00 AM
To just a bit worried,
My mom had a tumor in her groin and today (April 18th) we find out it is b-lymphoma. I am researching everything possible on her pathology report. She had some pain in her groin and at first they thought it was a hernia and later did a biopsy (april 9th) and have now confirmed b-lyphoma. My understanding is that if caught early enough she may only have to do radiation. We are awaiting a consultation where I will ask more questions. Don't worry it may also be benign or nothing at all. I just noticed that you couldn't find anything regarding lymphoma in the groin. Doc says my mom should be fine. We are from Canada I am 37 years old and my mom is 65 (just retired). Hope you get good results and don't try to look to deep on the internet you might just get depressed.
by Betwixt on Fri Apr 18, 2008 12:00 AM
It sounds like you have a very thorough Doctor, which is a good thing, they go through all the steps to rule out certain things such as the main one being that of Cancer, try not to worry, it could be a list of things.
I’m still in the steps have been since last year, not knowing is a pain, yours should be sorted soon due to location, I hope all will be ok for you.
Keep us posted.
All the best
by funlife4me on Fri Apr 18, 2008 12:00 AM
On 4/17/2008 confused2 wrote:To just a bit worried, My mom had a tumor in her groin and today (April 18th) we find out it is b-lymphoma. I am researching everything possible on her pathology report. She had some pain in her groin and at first they thought it was a hernia and later did a biopsy (april 9th) and have now confirmed b-lyphoma. My understanding is that if caught early enough she may only have to do radiation. We are awaiting a consultation where I will ask more questions. Don't worry it may also be benign or nothing at all. I just noticed that you couldn't find anything regarding lymphoma in the groin. Doc says my mom should be fine. We are from Canada I am 37 years old and my mom is 65 (just retired). Hope you get good results and don't try to look to deep on the internet you might just get depressed.
On 4/18/2008 Betwixt wrote:It sounds like you have a very thorough Doctor, which is a good thing, they go through all the steps to rule out certain things such as the main one being that of Cancer, try not to worry, it could be a list of things.I’m still in the steps have been since last year, not knowing is a pain, yours should be sorted soon due to location, I hope all will be ok for you. Keep us posted. All the bestMichaela
Thank you Michaela, yes I am lucky with my Doctor. I don't go very often and so don't have anyone regular and did think I would probably be given antibiotics and sent home. I guess that's what started me to worry when she didn't give me any but ordered the tests instead. But you're right it's a good thing that it's being taken seriously. I'm sorry to hear you're diagnosis is taking so long, it really is the worst thing. I know that we complain about the NHS here in the UK but it seems we are pretty lucky when it matters. I hope things turn out OK for you. I will definitely post when I know more. Let me know how you get on too, and I'm always hear if you want to chat, whether my news is good or bad :) Sue
Yes, when I read about how tough they have it in America with all the costs involved in the medical field, I thank God that I am here in Australia, I don't have to pay anything for my scans and stuff because the Lymphoma is covered here, I am not sure but there are certain Cancers here that come under that provision and fortunately Lymphoma is one of them, the scans can cost an awful lot of money.
Thank you for your support, I only joined up yesterday and have been deeply touched by the people on here already, and been crying on and off ever since but its doing me good, haven't cried for a while and sometime you just need to.
I will post on how I get on and look forward to hearing about how your outcome goes, if I get the ok, I will have to say this experience has helped me to have compassion on what people go through with this scare and all the uncertainties along with it.
I just had a phone call from a really dear friend, she told me her sister may have mouth Cancer, so now I am off to try and read up on that, its a sad day.
God Bless and may he grant you his peace at this time.
All the best Michaela
Oh Michaela, I am sorry to hear about your friends sister, you are having a tough time.
I rang the doctors today to find out if the blood results were back and they were and all was normal, so I was relieved about that. Although, after, I remembered that blood results don't always show up anything for Lymphoma so I guess I'll just have to wait to see if the ultra sound turns up anything. The lump is really annoying me at the moment though, a bit of an awkward place for underwear :-). Oh well, I know what you mean about this kind of scare changing your outlook on life. I actually feel it's being a positive experience for me in some respects as it makes you focus on what's really important.
Do you mind me asking what your symptoms were and what they're checking? I just have so many questions going aroud at the moment, I think I probably need to try and get in to see my doctor again, just so I can ask them, as it's only me that's thought it could be Lymphoma and for all I know she has something completely different in her mind!
Anyway, I'll keep you posted and hope you're OK and your friends sister.
by Betwixt on Mon Apr 21, 2008 12:00 AM
Sorry this is late getting back, weekends are not good for me.
WARNING: Before I start this, keep in mind I am a bit of a joker and get carried away at times, I find if I laugh about things I seem to get through this easier.
Looks like my friend’s sister has some type of skin disorder so most probably not Cancer, so they are relieved to say the least at this point in time.
Yes blood results can be fine; I don’t know the ins and outs of this though.
Hopefully they will see more with the scan you have and if needs be a biopsy, bottom line is they can not really say for sure about anything unless they do an actual biopsy, “TIP” get your life insurance sorted out before hand, they wont give me life insurance for just walking into an Oncologists office, even thinking about it disqualifies you and I am not joking here, this has happened to me and they were ringing me up trying to sell me life insurance, I didn't go looking, I tried to tell them not to waste their time but they wouldn't listen, but some of the questions are a insult to have to answer.
Sounds like it is really annoying where you have it located, yes I felt it was a positive for me after the initial shock, but it sure does help you get your priorities back in order, for a while then back to the same ol same ol, I think we can all be slow learners when it comes to things like priorities and what’s really important in life, I know I am.
How I came to be told I may have Cancer was by going for a scan for something else, I was showing off at work by proving I could out walk the RN on duty, I work in Aged Care facility anyhow the day after I could hardly walk at all, I developed lower back pain, I ended up at the Doctors for some scripts and just mentioned to her that I had a back ache, she’s an amazing Doctor and straight away got me to go for a CAT scan, before I knew it I was back in the Doctors rooms and she was very grim, which is very usual for her, she’s normally a laugh a minute, she said she was not happy, we have to rule out Cancer, as the Scan came back with “Pathological mesenteric and para-aortic lymphadenopathy with the most likely diagnosis being that of lymphoma”, I was cool about this and tried to comfort her a bit, poor luv.
I was then sent off to an Oncologist, who looked like he needed glasses to see what was on the scan, he said that they normally deal with bigger lymph nodes, mine were only slightly over the except able normal size and I think that was just one of them, he couldn’t work out why I was there, nor could I and I was busting to get out of there, but he proceeded to check me out, did a physical, he asked me about symptoms, I said I felt fine, actually fantastic never felt better, except for the back pain, which had all but disappeared by the time I saw him and the only other thing was sweats, I was more embarrassed to really mention them, which seemed to coincided with a new mattress we had bought. It was latex one, so I thought it was making me sweat, funny thing was I only sweat when I actually "fell to sleep", I could lay in that bed all day if I wanted to and I was fine, then one day I was in the lounge and fell off to sleep and woke up in a sweat, so I then realized it wasn’t the mattress after all, the night sweats ceased prior to seeing the Oncologist I think they were scared of him and then they came back briefly and went as quick as they came, which could be hormonal.
I had huge weight loss but that was only by extremely strict dieting, but I don’t think they believed me; I put it on super fast, as I have a thyroid problem, and so loosing weight is not one of my symptoms unfortunately.
While I was there he said to me I have a cyst which needs to come out, so I was sent off to a Gynecologist Oncologist (long word hey), he wanted them to do a biopsy of the Lymph nodes while they were in there ripping out this cyst, (I think the dentist would have been a better choice), they said to me that the operation was extremely dangerous and had an extremely high morbidity rate as the lymph node they would really need to get is right near the Aorta, and because the head Oncologists have been telling me it could be a "list of things", which by the way I never seem to get, I figured it wasn’t worth dieing on the operating table at this point in time, (which was five weeks back), plus they would have to gut me like a fish to get the biopsy, I am a wee bit vain so less scarring as possible please.
So in total I’ve had two CAT Scans and they show that the Lymph nodes have grown by 2-3mil, but then I was told that could just be the darn scanning machines being different, they didn’t scan me at the same place.
I have had a PET scan and thats supposed to light up Lymphoma and mine came back “inconclusive” (typical), so got another one of those lovely things due in May, so by the end of May I should know more, they are scanning me at the same PET scanning machine as last time, so that should give us a better concrete reading of changes if any I hope.
I figured that they would have been better getting a heart surgeon to get the biopsy rather than a gynecologist being that the lymph nodes in question are right next to the main artery of the heart, isn’t this a reasonable thought?
I believe all my blood tests have come back fine, except my thyroid test is a bit high, he seems more concern with my thyroxin dose than anything else, don’t know why, he thinks I stressed out because I told him off about risking my life on the operating table and using diffrent scanning machines, so too much thyroxin can cause you to show anxiety and your eye balls to bulge he said, I would have thought what I had to put up with was causing that, but who am I.
This has been going on since October of last year, so I am unsure of my future at this stage, the Oncologist did say that “if” it is Lymphoma it would be the Indolent type as it is slow growing, thank the Lord for that, I don’t need a fast growing type with the Oncologists I have surrounding me ha ha, I will be convince of their growth if they scanned me on the same scanning machines, so I am keen to confirm this.
I think if they come back and say they have grown I am thinking I am still going to refuse that biopsy and just wait until I have no option but to have it done.
I know one thing I am getting more exhausted, but that’s because they have taken me off of half my thyroxin medication, plus I am going to the gym three times a week and bike riding on top of all of that.
The cyst was removed which in fact turned out to be a Tumor (benign), but it would have kept growing apparently, so it would have had to come out, the surgeons looked around while they had me on the operating table and said they could find nothing inside of me that would be causing the lymph nodes to swell, well thats because most things have already been taken out from prior opperations.
Which is a mystery and disappointment really, would have been good to have an infection or something that could have been cleaned up with some antibiotics, I did ask the Oncologist if it could be an infection and he said no, I asked him for a good dose of antibiotics to see if that would help, he also said it could be inflammatory, I asked for inflammatory meds and again he said no, I can not work them out.
Well that’s my long-winded account of the past 7 months of probably 5 years to live.
Thanks for your concern, how are you feeling, a bit up and down too I bet with worry.
by DavidP1227 on Mon Apr 21, 2008 12:00 AM
Don't panic that is my first bit of advice. My second is that when you do panic, because that is the absolute normal thing to do, forgive yourself and don't feel the need to appologize. Health can be a scary thing for many reasons, but really today isn't the time. There are always many opportunities to panic later and you will.
I will let you know that there is such a good chance that the doctor is being cautious and thankfully so. You lymph system is basically your 'toxic waste' system of your body. Keep thinking positively because your lymph nodes have a way of enlarging in reaction to things you may not notice. I have had the lymph nodes in my groin enlarge because or irritation due to a scare from a surgery. We just usually don't notice them in places other then our neck because that they are deep enough we don't know they are there. There are a lot of reasons other than cancer that can cause them to react. It is good to educate yourself but know there are a lot of reasons for your symptoms. Be patient with yourself and the doctors to find out what it isn't and hopefully what it is. Doctors look at what is scary and what isn't, but we tend to only hear the scary stuff.
Okay so what do we do to be patient? First thing I'll tell you is to have faith. I won't preach a religion, but if you have one use it. If you don't you still need to have some faith. Faith in the doctors, your friends, your family and yourself even faith in the system. Everything will be okay and everyone will be able to handle it. Being okay doesn't mean that you won't get bad news, just that you and the people in your life will handle it. Take a lot of deep breaths and try to relax when you can. If you are a person to post, or even read a website like this, then you are a person that meets lifes challenges.
Ask a lot of questions and keep on top of everything. Keep a running list of your questions as well. It helps you keep focused and not get lost on the journey. Start tracking your tests and the results. I even keep copies of the results for myself. I may not understand them all but it gives me some sort of illusion of control. Always ask when you will hear something, or get results. Call if you don't get them. Don't worry about being a nag, you are just reminding them that you are there. Being an informed patient isn't bad, so wanting to know the results is just keeping yourself in the loop. Keep track of what tests they run and what you learn. The worst that will happen is you keep yourself busy and less focused on what is scary. To me the wait is scary and not the results.
Look at what is good. At your age if you do have lymphoma it is most likely Hodgkins. (Review this website under the atlas and look at both lymphomas and information about them.) Hodgkins is cured in 75% of the patients. You are young, it is early and you are strong. Again you are willing to look what could be the problem that is good. Just remember it is only one option of many things.
I know I've went sort of all over the place, but I want to just touch on a lot of thoughts to help you get through. I've been on this journey for a while and the thing that I try to do is give myself some peace. One of the best things I've learned from a show on cancer is that you have to remember to live. Don't get lost in what might be or might kill you that only kills minutes of your life. Living is the most important part of life.
After all that pep talk let's go into some of the tests. Let me give you a very simple run down of them because I've had a lot in the past 9 months.
Blood tests - It's all about the chemistry and counts. Occasionally can tell if you have a cancer but mostly measures additional indicators. This can help decide if it is an infection because of the white blood cell count. In my opinion blood tests are like looking at the index of a book. It will give you a general idea of where to look and what to look for.
Ultrasound - Gives a picture of your mushy stuff and helps give a basic (cheap) view of the area.
X-ray without contrast - basically measures thick stuff. Bones, thick tumors and gives a basic look of your guts, but not always very clear. 2-dimensional so flattens you out for the picture.
X-ray with contrast - Same as above, but makes parts of you mushy parts easier to see and helps define the spaces in between.
Cat Scan - X-ray in 3-dimensions same distinction with our without contrast. Gives a better view of all the parts.
MRI - This gives a lot better picture of the mushy parts and is in 3-dimensions. It has a lot more definition and with contrast will give a very clear picture of what is going on in your body. And how your body is functioning.
PET scan - Similar to MRI but they use things to help show cancer. Not perfect so not used in all countries.
Hope that all helps and keep your chin up. It will be okay.
by funlife4me on Mon Apr 21, 2008 12:00 AM
Oh Michaela, you poor love, you have been going through it (even though you did make me laugh on a number of occasions). I guess you have to be grateful for your walk challenge, as it may not have been discovered yet and you've been waiting long enough as it is. I totally agree that a heart surgeon would probably have given you a little more confidence in getting the biopsy done, I mean you wouldn't want them to have forgoten where they were and tied some tubes! (sorry, I do have a strange sense of humour myself, so I hope you don't get offended!).
I'm feeling like a bit of a fraud to be honest, when there are so many people, including you, that have genuine reason to be concerned. I mean, Dr. Sue I'm not, so I shouldn't be jumping to all sort of conclusions. I've now convined myself that it really is probably nothing and I'll feel really bad for worrying friends and making such a big deal out of it. I rang the doctor today as I thought I should try and find out if she thought I should be worried. I was going to book an appointment, but then decided that taking a half day off work for what would probably be a 5 minute appointment probably wasn't worth it (I work over an hour away so couldn't just 'nip' out for an appointment). I got her to call me instead and she said that the tests were purely precautionary and she didn't think I really had anything to worry about. My bloods were normal and when she checked me over she only found a couple of small nodes in my neck as well (Nodes in my neck! I didn't even no!) so there was probably nothing to worry about. I did mention the fact I hadn't come on yet and yes I had done numerous pregnancy tests which were negative but maybe it was just because I was worried. She agreed and didn't really say much else, just that if anything did show up on the ultra sound the results would be faxed through so they would no very soon after. I didn't mention lymphoma as I didn't want her to think I was some internet surfing hyperchondriac!
So, I'm trying to put it out of my head, not to touch my nodes, as I know that doesn't help them to go down anyway (and I'm sure they're getting smaller) and not to mention it anymore to anyone, so I don't look really silly when there's nothing wrong at all.
I know it must be so tough for you having to wait even longer and then not knowing what decision to take anyway. I know you would have asked, but isn't there another less dangerous node they can biopsy? Stupid question, I know, as they would have done that already, but it just seems so unfair that the one node they want is in such a dangerous spot (yes, that thought would have gone through your mind a hundred times already). Sorry, I'm just feeling your frustration!
Please keep in touch and let me know how it's going. I have a very big ear (well, OK it's not physically that big, quiet small and neat really) but it's always available for any venting or just general listening.
Sending you all my best wishes and I'll be thinking of you.
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