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new to this n confussed bout what been told :(

xxkristyxx's picture
xxkristyxx
Posts: 1
Joined: May 2012

well around last august time i was sent for xray cause of a cough for 3months that shown lumps on my lungs as he put it which he said he though was sarcoidosis so had ct scan n 3montly scans which all shown same everytime specalist has always said sarcoidosis also n explained id need sample took n told me if i choose he operation i would be cut on my chest n stay in over night but go to new hospital to see surgeon and he telln me he dont think its sarcodosis he thinks its lymphoma , i did not know what the word meant till i looked it up also he told me he wud cut through me neck :s and i would be in on morning n out by the nighttime he explained lumps on my windpipe n going to my lungs n some r by major arterys if im correct , i am so confussed they all tellin me diff things who do i believe ?am just waiting for pre op app now

anliperez915's picture
anliperez915
Posts: 739
Joined: Sep 2011

Hi xxkristyxx,
Really sorry that your here but welcome to the group. Sometimes it takes time for the docs to get the right diagnosis, it happened to me. At first I was told I had Follicular but months later I found out I had Splenic Marginal Zone Lymphoma. I know it can be very stressful especially when you're in the waiting mode! Just hang in there and hopefully your doctors will give you the correct diagnosis soon! I will be keeping you in my thoughts that everything goes well for you. Take care and please let us know how things are going for you.

Sincerely,
Liz

COBRA666's picture
COBRA666
Posts: 2418
Joined: May 2010

Kris,
Welcome to the board. It seems so many Drs. try to avoid the Lymphoma scene so often. Then it ends up taking months to get any results and diagnosis. They are going to have to get a biopsy to examine the cells. They can not tell just by an X-ray or even a ct scan. They can do a lot of guessing and in the meantime you sit and worry. Insist on a biopsy. I know its no fun,but its the only way to find out what is going on. Be thinking about you. Sometimes its slow on weekends,but you will get other replys shortly. Lot of helpful and caring people on here. John. By the way I have follicular lymphoma and am now in remission.

nikkig43
Posts: 73
Joined: Feb 2012

A few years ago I was diagnosed with Sarcoidosis. My CT scan showed spots on my lungs. I had a cough for a couple of months, but for the first 6 weeks, I had a fever, nausea, night sweats and severe joint pain especially my knees, ankles and feet. I never took any medication for it. I had CT scans every 3 months for a year. All the symptoms went away and the scans cleared up. My husband currently has lymphoma. He never had any symptoms except a swollen tonsil. He finished chemo and his repeat PET scan showed no sign of cancer. He's in the middle of radiation now and he's doing OK. He has continued to work throughout treatment.
I guess what I'm saying is, either way, it's curable. I know the waiting is torture, but you will get through it. Stay positive.
Keep in touch.

vinny59's picture
vinny59
Posts: 1030
Joined: Nov 2006

hey Kristy, the worst part of this whole thing is not knowing, having to wait for all the tests. Let the doctors do there thing and identify what you have first, then you can put all your efforts into getting better. Try to stay as positive as you can, and things will get better........ Vinny

bluerose's picture
bluerose
Posts: 1089
Joined: Jul 2009

I am a long term survivor of lymphoma and know how you feel about the confusion of diagnosis in the beginning. It's not easy, that's for sure but with support from sites like this and hopefully friends and family who understand and suppot you you will make it through just fine.

Having said that there are things that you can do to help yourself as well when trying to get to the bottom of a diagnose and for me the main one is to realize that you have a right to ask as many questions as you want til you are satisfied with the answers and understand them all completely. My advise at this point is to make sure that you make a good list of questions about your situation before you go to the doctors and make sure that you get answers that you understand. Ask them in a polite way so the doctors don't get irritated and try to keep them short but I found that the only power I felt was based in knowledge as to what was going on with me, right from the beginning. Keep a pad of paper and pen near you, or use your computer and when you think of a question you need answered then write it down over the days before your appointment and don't forget to take the list with you when you go see your doctor. It should help a great deal, if you don't already do this already. Dont' be afraid to ask questions - it's your life.

Also think about getting a second opinion if you at all can. Why not? It's important to have input about something as potentially serious as this and that may help too. You may find another doctor who you even feel more comfortable with if you don't feel that already with the one you have. Regardless second opinions can be a wise step. It's all very hard to do I know though when you are so worried in the first place but it also keeps you busy and feeling that you are in control of the situation by looking for more answers and hopefully finding them.

I want to wish you all the best and hope that all will be resolved for you in a positive way very soon. I am not online much anymore but will try to stop by now and then to see how you are doing if you update.

Take good care.

Blessings,

Bluerose

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 998
Joined: May 2012

The way to make and confirm a certain diagnosis is with a biopsy, preferrably with a piece of tissue cut out, rather than with a needle. Once the biopsy is back, they will be able to tell you with certainty what it is you have. Bless you, and keep us posted.

max

COBRA666's picture
COBRA666
Posts: 2418
Joined: May 2010

Kristy,
Any follow up reports as of yet? John

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