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Susan53's picture
Susan53
Posts: 176
Joined: Jun 2011

Hi I am new to this discussion board. I had a ct scan performed last Friday on Jan. 6th and doctors office called 2 days ago and said they have been watching a spot on my spleen since July 2010. They are going to do a pet scan on Tues. Jan. 17th. My problem was I was surprised that they had been watching a spot on my spleen and I had no knowledge of it. I called the Drs. office back and told them they caught me by surprise and I would like a the copies of my ct scans faxed to me with the reports. I am very scared that if this is cancer I have been reading that it could be Hodgekins or Non Hodgekins Lymphoma. Has anyone here had this experience with the spleen being cancerous. I already have had 3 different primary cancers being ovarian, uterine and appendix. All 3 were different and not mets. I don't want to panic too early, but I don't want to be blind sided either with another diag. Thanks and Hugs Sharon

anliperez915's picture
anliperez915
Posts: 744
Joined: Sep 2011

Hi Sharon,
Sorry that your here worrying about this, but welcome!, I'm 35, married with three kids, I was diagnosed with Follicular Non-Hodgkin Lymphoma in Aug 2011. I do have a tumor 16cm in my spleen and another one in my liver that I was recently notified of. I was also told that there's bone marrow involvement but I was sort of expecting that one since I have been having a lot of lower and mid back pain. I'm currently doing watchful waiting, Have you had any blood work done recently, I was wondering if you still see an oncologist for the other cancers that you had. Hopefully the docs will answer all of your questions and soon! Little by little I have learned that I have to be my own advocate with my doc, since he doesn't explain things right away. Take care of yourself and keep us posted.

Sincerely,
Liz

Susan53's picture
Susan53
Posts: 176
Joined: Jun 2011

Thank you for your response to my post. Yes I am still seeing my gyn. / onc. doctor for my ovarian and uterine cancers. I have not had recent blood work done and depending on what the pet scan shows, I am suspecting that I will be sent to another doctor. What kind of doctor are you going to for you cancer? How did they discover your cancer? Yes I also have learned that you do have to be your own advocate or have someone with you that will do the job as your advocate. I am going away for the weekend and will check the posting late Monday. I wish you the best in your treatments. Sharon

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

Sharon,
I am really sorry you have to be here. I see you are not new to the board,just this site.I have been here for a year and a half. I have noticed a lot of people on this site have had other cancers in the past. It appears that some eventually end up with Lymphoma. I am not saying you have Lymphoma,but reading a lot of post it makes me wonder if the other chemos and x-rays and just medicine in general has something to do with it.
Anytime the Drs. find something that does not look just right with us they want to check it out. I am glad they do this. Most of the time it turns out to be nothing to worry about,but its always good to have it checked anyway. I am sure you will be fine.
I was diagnosed almost a year ago with Indolent NHL,stage 4 and and now in remission. John

Susan53's picture
Susan53
Posts: 176
Joined: Jun 2011

Thanks John for replying to my post. It is always nice to have someone answer my post and be willing to share their experiences with other people. Yes I am glad that my doctor is proactive and willing to check things out that may not be quite right. I am glad to hear that you are now in remission and hope that you are that way for a long time. Sharon

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

Sharon,
I forgot to reread my post before I submitted. I was diagnosed almost 2 years ago. I have been in remission since Oct.2010. Usually if I don't reread it looks like pig latin.LOL John

anliperez915's picture
anliperez915
Posts: 744
Joined: Sep 2011

Hi Sharon,
My New doc noticed a high amount of white blood cells, she thought that was strange and sent me to my oncologist/hematologist. He did more blood work, bone marrow biopsy, CT Scan, and MRI. I had seen the old doc for about 4 years she later left (not to be mean but Thank God) because the new doc told me that they had already been high for a full year! She asked me if the old doc ever mentioned this before I said no...I just wonder how the old doc missed something as important as routine blood work. I'm also in the process of getting a second opinion because the oncologist that I'm seeing doesn't want to treat me yet (because of other health issues). I feel that getting a second opinion will ease my mind. I just don't want to get to a point where its gonna be too late and I didn't even try.
Take care!

Sincerely,
Liz

miss maggie
Posts: 929
Joined: Mar 2010

Dear Liz,

It looks like it was meant to be getting a new doctor. I imagine it is difficult for you, now having to do research getting a second opinion. Especialy with 3 children.

I think I mentioned this in another post. Before being DX in Sept 2009, You can say, I always put off the tests I should of followed up on. Example, pap, colonoscopy, etc. Things have changed, and I am taking better care of myself. Whenever I see my internist, oncologist, etc, I always ask for copies of blood work, or the results of any tests that I had. If you had the
results of the blood test, you would of seen your white blood count was high. Then you might have called your oncologist and questioned he or she. Or if you have an internist, he or she might have followed up with the oncologist on the high levels. About 7 months ago, I had a blood test taken by my oncologist, that would check for my Immunoglobulin levels. I never heard back from her. I received the results and noticed some levels were a bit low. Before calling the oncologist I went to see my internest. He assured me if it was anything serious, the oncologist would of called. Still I made him call the oncologist right then and there. It turned out, the levels were notlow enough for concern. IgG 543 low normal 700-1600, IgM 38 low
normal 40-230, IgA 224 normal, normal 70-400. When you get the results of any blood tests, it is noted when the levels are low or high. L for low, H for high.

If possible, if you have the time, do you have a family doctor? If so, let him or her check all the results of any tests you have. My internist looks up the results on the computer. It's
somewhat like having a second opinion.

Liz, I have no idea how things will turn out for me. I do the best I can. Who knows what the
future will bring? I have been in remission since Jan 2011. Or so I am told? I see my oncologist next month, Feb 6, 2012. I was DX with Marginal, stage 1, low grade B cell NHL.
Sub type: Extranodal marginal zone B Cell Lymphoma. I was DX when my small bowel perforated
in Sept 2009. I suppose it is a form of indolent NHL. It can return. I was told it might not for 5 years, or not at all. If it does return, I would be treated again with Rituxan. I never had Chemo, only treated with Rituxan in Dec 2009. I think I was told, it can transform also.

I will keep you in my prayers. Let me know how the second opinion goes. Luv you Maggie

anliperez915's picture
anliperez915
Posts: 744
Joined: Sep 2011

Hi Miss Maggie,
How are you feeling Miss Maggie? So far I feel better, thank you for reading my post. To answer some of your questions, let me first tell you that I'm usually the type of person that does what she is told to do...no questions asked. I also never get my results for anything that I get done, but since I have joined this site I've learned that I should be getting all of my results. I'm learning that I have to take charge of my life and not just do what the docs tell me to do. To question them and ask why?
I'm going to get a round of new test done pretty soon and I'm going to request the copies of everything I get done. Before I was diagnosed with cancer I had a Dr. (which you can say she was like my primary doc) she did everything for me. I did see her for 4yrs then she moved to another clinic, that's when I got my new doc. Now I have better communication with my new doc then what I had with my old doc. What is really bothering me with my Oncologist is that he hasn't shared all of my results with my primary doc, even with a signed request from me (release of my medical information). I did inform her of what the Onc. said to me on my last visit, and again she tried to get info from him but only sent her a fax saying my case was mild and their was nothing to worry about. I guess she didn't like that response either so she's referring me to another oncology clinic and hopefully I can get a better results. Sorry I bombarded you with all this stuff, didn't mean to rant like crazy!
Take care of yourself and its good to hear from you, I hadn't seen you post in a couple of days. Sending you a huge warm hug via internet.

Sincerely,
Liz

miss maggie
Posts: 929
Joined: Mar 2010

Dear Liz,

To tell you the truth, I never heard of an oncologist not giving your primary doctor
results of blood tests and scans. You say "you go to a clinic". Is there a manager,or
someone in charge in the office at the clinic that you could go to? My oncologist doesn't
send or fax any results personally. Either my internist sees the results on the computer, or
I make a request to the girls in the office.

I am so sorry you have to go to another oncologist. I see your primary doctor is concerned
also. Why should anyone give you a hard time? Considering you have 3 children, and have
health issues also.

That's OK, you say you WERE not the kind of person to take charge. I think all of us might
have been like that at some time. Like me and others, we learn we have to be responsible
for ourselves. No one cares as much as we do, or our loved ones do. We owe it to ourselves
to be vigilent.

Your new primary doctor sounds wonderful. Now your old oncologist has to send all the records to the new oncologist. Or, shall I say, the office staff has no choice, but to send the
records. Your old oncologist says "your case is mild". At least that is good news.

Thank you for asking. I am fine right now. You are no bother at all. It is my pleasure. I
have learned so much from this site. I try and catch up each day with the trials of others,
and say a prayer for each one I read.

My last thoughts to you. I do worry so much. You are not alone. Even though I am in remission, so they say. Things could change. In the event in the future, and things go
south. At least I have all the records to show another doctor for a second opinion. I
can't imagine being upset at the new DX, and then having to tract down all the reports.

I will leave you now with my blessings to you. If you have time, let me know how your
visit with the new oncologist went.

Luv Maggie

Susan53's picture
Susan53
Posts: 176
Joined: Jun 2011

Doctors office called today and said the Pet Scan report said no metastic cancer and the spot on my spleen appears to be a cyst and it will be watched. I am so happy. Praise the Lord and all the people that were praying for me. Thanks Sharon

allmost60's picture
allmost60
Posts: 3156
Joined: Jul 2010

Hi Sharon,
That certainly is good news,and I'm so very happy for you! Hope you keep in touch and let us know how things go for you. So many folks quit posting and then we sit and wonder how they are doing. Take care and celebrate your good news...Sue (FNHL-2-3A-6/10)

Susan53's picture
Susan53
Posts: 176
Joined: Jun 2011

I will still be around but mostly in the ovarian, uterine and appendix cancer boards. I am really excited that I didn't have to had another cancer to my list. Thanks for your support Sharon

anliperez915's picture
anliperez915
Posts: 744
Joined: Sep 2011

Hi Sharon,
That's wonderful news! I' m really happy for you...Thank God Sharon that it was only a cyst. I'm sending you a warm hug via internet. Take care of yourself.

Sincerely,
Liz

Susan53's picture
Susan53
Posts: 176
Joined: Jun 2011

I am so very happy that I do not have another cancer to deal with at this time. I will still be around on the ovarian, uterine and the appendix boards. Thanks for all the kind support that you have given me. Sharon Hugs to you

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