finding those sneaky mets

has anyone experienced neurological issues? If so, was it from Arimidex? Or something else? Looking for some direction. Thank-you, Mariann

Hi there. My mother was diagnosed with a tiny 1.2mm invasive lobular cancer of the breast in February. It was an accidental finding after they removed a papillary lesion that was causing nipple discharge. She had a sentinel node biopsy a couple of weeks later which was clear of metastases, declared to be stage 1, grade 1. She then moved on to radiation treatment - she just finished this on Thursday.  

Around the time of diagnosis she started having headaches, dizzy spells and issues around memory and vision so 5 weeks ago her oncologist referred her for a CAT scan to investigate. The cat scanned showed a potential meningioma in her frontal lobe. A MRI was then done to investigate further and this and the radiologist report showed

"No enlarged or abnormal cervical lymph nodes in the visualised neck.

Limited post contrast images of the brain demonstrates a durally based 16 mm diameter mildly enhancing right frontal extra-axial mass without adjacent parenchymal oedema. 2 tiny enhancing cerebral lesions, one within the medial left parietal lobe and one within the medial right parietal lobe measuring up to 2 mm in diameter.

No focal bony lesion identified."

The radiologist identified the two small lesions as cerebral metastases. The oncologist disagreed and they had a meeting regarding it with the neurosurgeon. The radiologist held firm to his opinion, the oncologist feels it's unlikely to be a spread given the original tumour was so small. The plan is at this stage to wait two months, repeat the MRI and see what is happening. So far any information I can find points to the radiologist being right.

In addition mum has been having serious issues with nausea and constipation and bladder.  Now I am worried that there may be a possibility that her breast cancer may have spread to this region as well and could be behind some of these issues? Has anyone else had similar bowel/bladder issues? She also has been having lower back pain but they've CT'd her chest, abdomen and spine and they appeared clear.  

Sorry which link?

Hi Racy. We have been waiting on the pathology from the tumour and unfortunately we don't have any. The pathology results read "Insufficient DNA was obtained from this sample for molecular tests." The Oncologist said that ILC is rarely HER+ . We are quering this as along with the ILC there was LCIS and Pleomophic LCIS - surely there was something they could test?!

It's pleomorphic as well.

Hi, this is all very scary, but interesting.

My oncologist admits he doesn't know much about lobular cancer, so it's up to me to research.

I've had a PET scan and a bone scan. Both were clear, but from what I've read here, I gather that these scans wouldn't have picked up any mets.

I am due to have a CT scan before I begin radiation. Would that pick up mets?

What I don't understand is....if a met is found, what happens then?

My original oncologist just said that they would ease the symptoms that the cancer caused.

Is this true? Or is more chemo, surgery etc on the cards?

Thanks.

Rightwally, I had a CT and no mets.



If you are not confident with your doctor, consider finding another one.



If a met is found, you would have many treatment options depending on the site of the met. Since your cancer was hormone positive, you will likely have hormone therapy with or without mets.



Wishing you well. You will learn heaps on this site!

Kristin, yes actually this is being researched. I only know because one of the lead researchers is an old class mate of mine (we were good friends in elementary school). Here is a list of publications: http://bmi.ku.dk/english/Staff/?id=65978&f=3&pubcategory=&vis=medarbejder

What he is working on is developing much more accurate and sensitive contrasts for use in PT. One of the projected uses is to be able to ascertain cell death from chemo within hours of treatment, so that you can much more quickly see if a certain chemo is benefiting a given patient.

People are also working on developing blood tests that can detect breast cancer, primary or mets. I saw an article about this just last week.

thanks Momine!

Some relevant info here

http://www.rgcc-genlab.com/

b) Minimal Residual Disease testing

R.G.C.C also offer tests for minimal residual disease ie cancer cells which are still present but not in large enough volume to be detected on a scan. In fact for a tumour to be visible on a scan at least 10⁹ - 10¹² cells must be present, which is a huge number. The advantage of this type of testing is that action may be taken earlier to try to avoid or stave off a recurrence. There are all sorts of issues in relation to the use of orthodox chemotherapy agents in this case, but simple non-toxic nutritional and other complementary strategies may offer some much-overlooked help. MRD screening will not appeal to everyone, and it may generate unhelpful anxiety for some. But because these tests are not 'diagnosing' a recurrence, but rather are giving some indication of likelihood of recurrence, then they provide an opportunity for those that want it to take some positive action.

Lily, is that the same as the Greek test?  Because, I have also read that can be unreliable.

There are no clinical studies on any of these tests only experiential studies but some oncologists in the US do use the circulating tumour cell test as obviously the higher the number of tumour cells you have circulating the more chance there is that one of them will land and grow somewhere........so for me its better than nothing. Over here they don´t do PET scans unless you have symptoms, same in the UK.so its that or nothing and I have to pay for it privately but I think some oncologists in the USA do offer this test, I saw this info somewhere on Stage 4 thread

Steph-nz

You've been thru so much. Lobular is so tricky. Did you get PET scan? Scans and tumor markers seems to be all we have to help up figure out this disease, and tricky lobular hides....they can do biopsy, if they know where to look. I have been following with scans a tumor in my liver in a location that is too dangerous to doa biopsy on. The docs not certain if it's a spread or not. This last scan, tumor has disappeared...so I ask if it disappeared because of my cancer medication Arimidex shrinking it? And if that's the case, it means it was estrogen receptor positive and most likely a spread from breast cancer. The doctors just say, it's hard to know100% for sure....so we live with so much unknow about Lobular. I am sorry you are going through all this. Others will come along and maybe shed some light....

I am so sorry about this added anxiety. It always feels like there's something, no?

The great news is your scans otherwise came back clear.

Many of us are walking around with unidentified nodules that are b-9 and we were born with. It doesn't help those of us once diagnosed with cancer because everything seems scarier. (((((((((IllinoisNancy)))))))))))

As an aside, my sister had a finding of lung nodules (incidental finding) and she's still here with them. They never did do a biopsy, just watched it for 3 years and since they never grew, they left it as is.

Read the book about the wine reviewers from Wall Street Journal ...they were all but ready to have the wife die, htinking pancreatic cancer...turned out to be a shadow that never amounted to anything.

And finally, if the mass is in tact, the liver regenerates amazingly. They may be able to simply remove the area and your liver will grow back.

Looking forward to hearing you had an amazing vacation and this was nothing.