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completely sure something is wrong

wimaine
Posts: 6
Joined: Sep 2014

Hi -- I hope this post will be appropriate for this forum, because I could use some reassurance that I'm either not crazy or that I will be OK. 

I went to see the dr today after having had some issues with a painful spot in my armpit for a couple of months (not a lump), accompanied by some swollen lymph nodes for a couple of weeks that don't hurt but don't go away.   When they first popped up (the lymph nodes) I felt sorta OK, but as time goes on, I keep getting a low grade fever and just generally feel sick, along with gastrointestinal upset.   In other words, instead of getting better, I'm feeling progressively worse.  Those things put together with the fact that my grandmother had both breast cancer and melanoma were worrying to me.    Then I talked to the dr and did some research, and found out that the fact that I itch like crazy about 20% of the time at night, and have for a year or so, but never have any rash is sort of a bad sign.  Add in a pretty persistent headache.   

I know all of that could be explained by other things, but the timing seems sort of suspicious to me.    This part is the kicker:   I know -- KNOW -- that something is wrong.   Not just hypochondria or overreacting;  I know it's something that ties all or most of this together.  My brain is aware that something in my body is not right.   I have a sick feeling that it's lymphoma or something similar (I have no idea what a similar thing would be).   I think the dr is maybe looking in the same direction.   She ordered a mammogram, which I expected no matter what.   She also ordered imaging of my abdomen and a CBC.   I went today for the blood work, hoping to get some information in a day or two.   

My real questions, I guess are:

Does all this sound as suspicious to you as it does to me?

and

Has anyone ever noticed a "gut feeling" about this?  Not panicking, not hysteria, just a very solid intuition?

 

Any feedback would be really really great

NANCYL1
Posts: 289
Joined: Jun 2012

Wimaine:

I never had a "gut' feeling.  Was feeling ok when I went to my Internist for a checkup.  Had a regular bloodtest.  Showed that my white cells were up, which could have been some kind of infection.  She sent me to an Oncologist/Hematologist.    Had another blood test, CT-Scan, PT-Scan, and finally a bone marrow biopsy.   Was diagnosed:  B Cell Lymphoma.  Had two years of Rituxin infusions which ended last November.  Had a blood test in July, and it was OK.  Go to the Oncologist again in October.

Let us know how your test was.

Nancy

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3473
Joined: May 2012

Wimaine,

Your symptoms are consistent with lymphoma, but probably a variety of other things as well.  They are close enough to classic lymphoma symptoms to warrant a thorough investigation, and it sounds like your doc is on top of that and requesting the right things, especially the CT.  The itching, low grade fever, and weakness, along wih swollen nodes are are typical. Nodes with lymphoma usually do not hurt -- mine never did.

The relatives with breast cancer and melanomia by itself is not probably significant, since nether of those is strongly linked to lymphoma (breast cancer in the lymph nodes is not lymphoma, but simply breast cancer in the lymphatic system).

Your worry is normal. It requires investigation, but lymphoma is among the most easily treated of all cancers today. Please do share what you learn.  Patients have to drive their own health care. No one else will !

Max 

jimwins's picture
jimwins
Posts: 2111
Joined: Aug 2011

Welcome to the group.  I pretty much agree with Max.  Obviously something is going on.  It could easily be something besides lymphoma and I'll keep that hope for you :).  Please keep us updated and hang in there!

Hugs,

Jim

wimaine
Posts: 6
Joined: Sep 2014

My dr called and said that the CBC came back normal.  On my results I see that the hgb is a little low (but it always is with me), and the platelets are elevated, but not a lot.   I do still need to go in for the imaging, though, and see what that tells us.   If that comes back with nothing, as well, and this doctor is out of ideas, then I guess I will have to go to a different doctor, because there is clearly something wrong and I want to know what it is.   I'm wondering...  if this were some normal infection -- viral or bacterial -- wouldn't the WBC count be high??

wimaine
Posts: 6
Joined: Sep 2014

As I said, I know something is wrong.  Suspicions on what, but...  I go between feeling stupid for thinking cancer, and then swinging over to a hunch that's the answer. 

Here's the current symptoms, btw.   Some for months, some for a few weeks.  

(By the way, I do apologize if this post should go somewhere else.  If that's true, just let me know and I'll get off of here)

swollen nodes, including "mass" in groin, uncomfortable but not painful
intestinal upset
itching
frequent headaches
intermittent fever
antibiotics not effective
not improving
General mild flu feeling

 

So clearly something.  I have imaging supposed to be scheduled and a mammogram on Thur so fingers crossed. 

wimaine
Posts: 6
Joined: Sep 2014

I just got back from having the CT scan this morning.   I had to drink a solution then have a contrast dye injected.   The tech said that because of the dye that the dr will be able to tell exactly WHAT is there, not just whether or not something is.   As in, it won't just show a mass, but it'll be obvious whether the mass is cancer.   This doesn't sound right to me.   Any insight?

The results are supposed to be available to me within 24-48 hours.   I'd like to think that I may actually have some answers then, but if what the tech said as far as the amount of detail that can be determined is not correct, I'll have to settle for less than a real answer.  I'd like to know what to expect so I don't get my hopes up about what kind of info I could get, then get disappointed. 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3473
Joined: May 2012

Wimain,

There are no magic bullets in cancer diagnosis, and no instant answers.

A CT with contrast will give the doc some very clear and informative images, but only a biopsy (and nothing else) can officially determine that any given tissue is cancerous.  A CT can make a doctor determine VERY LIKELY what something is, but not make final determination.   My first-ever CT went to a surgeon and he told me as he looked at it,  "This is almost certainly lymphoma, but I have to get a biopsy to confirm."

CTs are absolutely necessary in treating cancer. They all give "real" information, just not "definitive" information.  The CT will show if you need a biopsy or not, and if you do, it will guide the surgeon to the best incision spot to remove the sample.  So it is most assuridly ""real, but not "final."

You will need to try to be a little bit patient, as difficult as it is.  It sounds to me like your docs are working your case very hard, and relatively FAST. It was over two months between my first CT and when I began infusions, and that was with me moving things as fast as I could.  I am currently waiting to have a prostate biopsy, and was told yesterday that the "soonest available" is five weeks away. I just have to wait, and that should not be a problem.  I had a chest CT of my lungs three weeks ago, and the first opportunity for me to get the results is still a week away. Things just have to go at their own pace.  Most doctors and facilities (especially oncologists) are extremely overworked and backed-up for appointments.

Anxiety, worry, and wanting answers are absolutely normal when facing cancer.  Your docs are by all indications trying to get those answers for you as fast as they can.

wishing you health,

max 

wimaine
Posts: 6
Joined: Sep 2014

The dr called to tell me the ct was normal, with the only notable things being a small leiomyoma on my uterus and a small ovarian cyst.  No enlarged liver, pancreas, spleen, and no evidence of any mass in the groin area. 

Frustrating!

I know something is there, because I can feel it taking up room inside.   And it doesn't go away when I lie down like my hernia did when I had it.   She did ask me about bowel function, which is kinda messed up recently.  She suggested IBS, but I told her although I'd love to address that, if it's a separate issue from my primary concerns we'll set it aside for now.   I do want to know, though, is there such a condition of the colon that has the same symptoms as lymphoma?   Enlarged glands, intermittent fever, itching, general flu feeling?   Has anyone experienced this situation? 

I am going for a mammogram tomorrow, still.   That won't get a picture of the spot in my armpit, but the dr hopes that she may see something in the breast tissue that the armpit gland may be reacting to.  ??

She is talking to their consulting hematologist/oncologist for advice on where to go from here. 

So I suppose my journey to finding out what is really going on will be longer than I would have liked.  

 

Would it be a general consensus that if I really think there's something going on, I should push the issue even if the doctors say to drop it?  At what point do you walk away?  I mean, you can't prove a negative. 

 

wimaine
Posts: 6
Joined: Sep 2014

The dr called a hematologist/oncologist and 5 minutes later she was back on the phone with me that he suspects Hodgkin's and wants a full body scan.  Being scheduled for next week.   I'm really surprised at the speed, here

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