Well its been a couple weeks since I got the pathology from John Hopkins. Today I called & they told me the slides were sent back to my original cancer center. They recommended I have them sent to the national cancer center in Maryland for a final opinion. The original diagnoses was follicular lymphoma. John Hopkins does not c that at all. They will not rule out very early stage marginal zone but also will not say I have it. Said I have reactive cells but cannot prove anything. Either way it's watch & wait. Now that I found out how terrible my health insurance is it would b nice to b able to up my policy but is impossible right now I'm almost certain. It would b nice to close this chapter of my life once & for all or to continue this "journey". I continue to check on my groin node and go for my annual pap at the end of the month. John Hopkins said as painful as a bone marrow test is it is what they recommend. It is the least harmful in the long run & to avoid scans if at all possible. Possibly in 6 months & blood work. Thank u all for being there!!
Good luck to you. Let's hope JH is right and you can close this door. I would have another read on those slides just to give you additional peace of mind. I wouldn't do the bone marrow test first unless a scan lit up other hot spots. It makes no sense in doing it before a scan unless your blood work looks suspicious. I have a small amount of CLL in my bone and my blood work still doesn't show it. I am having one next week and it has been a year since my last one. I can't remember,have you had a cat scan with contrast? That would show if you have other node involvement, especially in the deep areas that can't be seen or felt. So send off for the 3rd and wait and see what they say. Don't do any more tests till you get that piece of the puzzle. And try not to stew over it, (I know easy to say) stay busy doing stuff you enjoy and being good to yourself. Remember, worst case senario is you have Follicular, which is slow growing and can be treated down the road if it gets a little wild, kinda like you're a beautiful lawn a one dandelion pops up, you aren't going to tear up that beautiful lawn because of one little dandelion, nor are you going to stop sitting in a lawn chair enjoying the grass beneathe your feet (you can tell my Texas grass is all gone now) so unless more of those weeds pop up, enjoy your lawn! (maybe a dog peed on that first little weed and killed it, who knows why stuff comes and goes?) God Bless and let us know what happens! Big Hug, KBeale
Wow! U got a way w words!! Thank u very nice:). I called my oncologist here & he has recommended a pathologist in Hershey & already sent my slides & 32 pages of notes:/. I asked 2 wks ago if they would do that but never heard anything til I requested to follow through w John Hopkins referral. So today or tomorrow I'm to hear what Hershey says. I felt the local oncologist was nervous because I had recorded his visits. He did all my blood tests, ct's of pelvis, abdomen, chest & neck w contrast & bone marrow based on pathology results of a partial node removed by my cystic duct during a gall bladder removal.
YUP THAT'S kATHY...BUT SHE IS RIGHT.
Sounds like you are being very pro active, good for you. Only a few more days and with all the testing they've already done, at this stage I don't think you need any more, ball's still in their court, and as we've all learned they never took tennis during med school! So give them till Thursday to respond then you have Friday to lite a tiny fire under them! Take care and glad to hear you sounding so upbeat! Big smiles to you, KBeale
I go to Hershey on the 30th. My local oncologist told me to pick up the DVD o my scans to take. I took them to John Hopkins & they told me they ddnt need to c them?! Also when I asked to describe something on a report they asked if They received a copy of that paper??! Like the md hadn't even reviewed my case only went by the pathologist report. What a joke. Too many patients??
Sorry you had to experience that also, I ran into that when I was sent to another hospital also. It makes you wonder doesn't it? I guess where I went they like their own stuff and pretty much ignore what you sent in on paper and DVD's. They look at the actual slides and then if there is any questions they run their own tests. I did ask why once and the MD said a lot of times the scans and work done elsewhere don't work on their set ups, they can't see things as clear as they can when they use their own equipment to do them so that is why they only really look at the actual slides and person, and then repeat what they need to repeat. Maybe that is what is happening with you.
I did have good results with my referal so hopefully you will also. Keep us posted and don't be afraid to ask questions so that you can understand too. Be your own advocate!
Now my appt has been pushed to Friday at Hershey. I had my pap done yesterday & my md felt the enlarges lymph nodes in my groin. 2cm's. Kinda hard. She also hit a tender area on the outside near it towards the outside. When I asked her if it could b a cyst she said wait til Friday & c what they have to say?! Put mr on antidepressants because I'm not sleeping. Wake up cold & hot. Ppl have swollen lymph nodes for long times right? Doesn't always mean anything?? Also at age 46 I have osteopenia & she's starting me on fosamax. Thru the cat scans they found 3 bulging discs in my lower back (that pain is off & on). Wish they're cat scanned the area in the back of my neck. That's more painful. I did tell my md that I originally came there in April to get my 40 yr old body back & have resigned to the fact that ain't happenin:/. The gall bladder removal started this roller coaster. I'm beginning to wonder if lymphoma is that confusing they tell everyone its follicular type like my first opinion was? 2nd opinion says no. Sooo anxious for Friday! Please tell me about lymph nodes being swollen. Also hoping Fridays place was a good place to go. I really don't want a 3rd different opinion:/
I would like to say swollen lymph nodes don't mean anything to make you happy but I can't , they always mean something. Now to find out what. Lymph nodes are the body's filtering system so if you have an infection near by the lymph glands may swell. If you have sinus drainage the nodes in the back of you neck may swell, Usually these types of nodes hurt when touched. Not always everyone is different. As a rule if they when first found do not hurt then you should get them checked out . If you let them go and ignore them they may eventually start to hurt but that is not good either, it is for the wrong reason. Cancer will hurt in it's later phases.
I would like my 40 year old body back but gave up that idea, now just happy with a healthy old body and that I did get. Still building up my stamina after treatments tho but it was all worth it.
Praying for good results with the MD on Friday. Remember ask any questions you have, write them down so you don't forget because you will. ((HUGS))
Fyi: I asked my family md yesterday if a groin node is swollen does that mean te infection is in that area? Also a neck gland mean ur head?? She said not necessarily. How Long is it normal for glands to be swollen do u know? And thank you for your quick response. I'd like u to get another support badge:)
Everyone is different so no I don't know. If it was an infection tho you would probably have a site in mind near the swollen gland. Like sinus drainage down the back of your throat, or an infected pimple near the swollen gland. It is hard to tell. You sound like you have a plan ...good-luck on Friday, keep us posted. ((HUGS))
Sending good thoghts your way Zipper.I hope SOMEONE will soon clear this all up once and for all.To heck with this wait and watch thing.Sure you've been there done it but will be doing a whole bunch more should this be Follicular lymphoma.Just, they go hand in hand.Wait and watch watch and wait......Yikes it's enough to take one to the edge of their seat.Hang in there,Michele Dx95 Follicular NHL3
Well Hershey said that the first pathologist don't do enuf nodes to biopsy as well as Baltimore. They agreed w Baltimore. No folliculartype but can't exclude very early involvement of marginal zone. We r going to try hormone replacement for 2 months to exclude menopause (haven't had a pd. For 7 yrs) to diagnose the night sweats or as my husband puts it - heat waves. I hafta giggle when he says that. I will get a pet scan in 6 months because the gall bladder removal should b healed inside. I'm glad I got 2 outta 3 same results. What can any one tell mr about marginal zone??
No bone marrow? I hope the heat waves stop that would be nice! Never had marginal zone but there are others on this site that have and I am sure they can help out. Keep up the vigilance on your body and what is happening so you can tell the MD if you need to. Happy for you and results. Take care...
Hello, Zipper! I am chiming in here because I went through a period of diagnostic uncertainty much like you. I found a swollen node behind my left ear in May, '08. Night sweats and mononucleosis-like symptoms. Went to my "replacement" doctor, as my regular MD had retired the month before. I told Dr about the node and family history of cancer. After tests, I was told that I had mononucleosis before - but I already knew that! I asked if I had it now, which would have meant that my immune system had failed. More tests. Yes, I had mono again. Dr thought I had a flare-up of Epstine-Barr virus. I then made an appointment with my immunologist, since he worked with immune systems. He mentioned lymphoma, which I suspected, and said that a node had to be biopsied, since they were now visibly bulging in my neck. His schedule was too far out, so DW called and found an independent surgeon in the area. Turns out that he had worked with Fred Hutchinson Cancer Research Center and was able to remove a node the next day. He gave me the advice that saved my life: "If you ever hear the word 'wait' from an oncologist, run for your life". He referred me to a local oncologist (who, unbeknownst to him, was just leaving on vacation). I saw his partner, who did a bone marrow aspiration (not that bad,, actually) and advised me that the pathology report on the node revealed "abnormal cells". He thought I had a virus and wanted to 'wait'. I ran for my life. DW had already made an appointment with Seattle Cancer Care Alliance (the treatment arm of Fred Hutchinson Cancer Research Center). The leukemia/lymphoma specialist that I saw ordered more sophisticated testing on the node and confirmed that it was Peripheral T-Cell Lymphoma-NOS (poor prognosis). By now, I was in stage IV, with 54 malignant lymph nodes and cancer in my bone marrow. I was then saturated with 8 different anti-cancer drugs, went into CR, but immediately relapsed (prognosis now even worse). Went on a clinical trial that miraculously opened right then, and remain in remission 29 months later.
Bottom line is that we must become our own advocates, and not be satisfied with what we are hearing until it is final and definite. Had I 'waited', I would not have finished 2008. I hope and pray that all turns out well in your case.
Jim
Awesome! I am sooo happy that things opened up for you and worked out so well. The advice given to you was super and very correct...never wait, it is your life and their gamble!! I have had 2 Docs. tell me to wait and both times I chose not to and both times I had cancer that was progressing, luckily I proceeded and stopped the cancer twice. I have had 3 types of cancer and the third time NO ONE told me to wait. I have been blessed and have achieved a cure with one and in remission with the other 2. PO18GUY...you are very right we have to be our own advocates because no one else will be! Take Care...
I have Marginal Zone but I can't you tell anything about it, except it is indolent, and I was somewhat symptomatic free, save for the obvious waxing and wanning of the neck nodes. Did have treatment last year, but it was set off by a stinging insect which put me in a lymph node crisis. I 'm not in remission, but now I am the most healthy I have been since...before I was DX. I had what is called 'a good response" to the R-CHOP.
I get heat waves...when I lay me down to sleep, but just for a minute.
I hope you get a firm DX soon, becasue once you do, you know whaich battle to fight.
Peace to you.
and Jim---wow what an ordeal you had. I want you on MY side. :)
Hi,Jim you hit the nail on the head about Drs.I have had the wrong dx on nodes more times then I can mention.Each time I went on my own and had them removed and I was right every time.I think what threw some drs was the odd places they showed up.Let's face it we live in these bodies and should have some off feeling when things out of sinc.After all what have we go to lose to be wrong?Take care Michele Dx95FNHL3
Rascal1, Thank you very much for your encouragement. Prayers that your remission continues.
Geri, I thought I was in the Twilight Zone, and could not convince anyone that I actually had cancer. It was a sinking feeling that was replaced only by the lead weight of the actual diagnosis. At first, I had an 'easy' dx, but I needed the hard one, as it prepared me for the battle. Prayers got me through the rest.
Michele-pa, it is a simple fact that medical science is geared toward embracing the most common explanation for a given set of symptoms. But, after seeing 60% of my dad's side succumb to the dread disease, I had perhaps more than a hunch that cancer had arrived. The blessing was that i was expecting cancer at some point, and did not let the dx destroy my attitude.
It was faith - my own and that of many others, that has brought me this far, and continues to carry me. Far too many amazing "coincidences" have occurred along this path for them to actually be coincidences. Thank you, Lord!
Jim
Hi Jim,Sounds like my family only all the cancers were different.But there are a few tell tell signs of all.Anyway you certainly have the attidue to carry you a very long way.I hope this treatment does its majic and it all works out.Thanks for the wisdom.Caring thoughts,MicheleDX95FNHL3