The TRUTH, please!!

I want to share my experience with a CT/PET scan last May.

I had a lesion (1.5 cm) light up in the spleen.  The reading radiologist said indicative of malignancy.  My oncologist was sure it was a cancer (not breast, however).  She thought it was early stage lymphoma or indicative of another undiagnosed cancer in the body.

 I had no other symptoms of a problem at that point.

The doctor immediately ordered extensive blood work.  All results were normal. A high resolution CT scan w/wo contrast of the spleen found the mass to be a benign cyst caused by a rare congenital malformation of the lymphatic tissue in the spleen.

I had another CT/PET scan at the end of August and nothing has changed.  The splenic mass is the same size and showed up as way less metabolically active than the scan in May (radiologist said something about a difference in technique).

What I learned about breast cancer recurrence is that BC usually shows up locally in the breast or nearby lymph nodes.  Other metastases show up in the lung, liver and bones.  BC very, very  rarely comes back first to the spleen and I did not come across any references to it showing up in the thymus.

Of course, in later metastatic disease, the BC can show up anywhere in the body.

That being said, the spot in the thymus is most likely not BC.  The one in the neck, maybe, but not likely. 

I know you are sure you have some form of cancer (I was positive).  Find out if there is a high resolution CT scan that might show structure of the hot spots . 

I guess it really boils down to how much faith you have in your doctor if the doctor really feels strongly about waiting three months because it probably is an infection. 

{{{Hugs}}}

Mary Jo

My oncologist has proven herself right in the past about various things that showed up in my test results, so I of course became upset when she was pretty sure my results showed cancer. 

I had what is called a diagnostic CT scan.  Because it was for my spleen, it was called an abdominal scan.  The CT scan was only of that area and was a much higher resolution  (thinner slices).  The radiologist was able to get a much clearer look at the lesion and could see the internal structure which lead to the cyst diagnosis.

I could not have a biopsy as the spleen is a dangerous organ to biopsy due to it's high vascularity and its inaccessible position in the body.  The interventional radiologist my oncologist sent me to for the biopsy refused to do it based on the findings of the CT/PET scan.  He looked at the disc of the scans and told me he thought it was probably benign and suggested the diagnostic CT scan.  He said he only does splenic biopsies with a lot more proof of possible malignancy and has an emergency surgery team standing by in case  of problems.

The thymus is easily accessible for biopsy and a biopsy would give you a definite answer.

The only way I would know if my diagnosis is correct is if my spleen was removed or at autopsy.  I'm not ready for either procedure.

So, decide if you can wait three months for another CT/PET scan or need to have the answers now ( and I do know what the waiting will be like).

This why many oncologists don't routinely sent patients for CT/PET scans.  The false positives give the patients a lot of stress until resolved.  I would be a lot less stressed if my oncologist didn't believe in them. She, however, likes to have CT/PET scans done.

They don't tell you, but skin mets is the 5th most common site for breast cancer mets.  It was misdiagnosed as "post radiation dermatitis" by both my GP and surgeon.  Onc did a biopsy and it was postive for breast cancer!   This is after double mastectomy, chemo, rads....the whole nine yards.  Triple Negative really SUCKS.  

Well first of all, a lymph node is not necessarily a metastasis.  That would depend on the biopsy of the node's findings.  I know, personally, a woman who has lived 17 years with bone mets.  They pop up and they rad them, they go away for a time, and if they come back, they zap them again.

The Thymus is not a place breast cancer usually goes.  So I would put my money on a false-positive, and this is the exact reason people like Dr. Susan Love do not like us to have these tests without symptoms.  She says too many false-positives, too much worry, and too much disruption of your life to be worth it.  Others, of course, have different opinions.

So try not to worry till you know more.  It is hard, but you can do it.

Gentle hugs, Shirlann