If you are not Stage IV but have questions, you may post here

BevJean,

I am sorry to hear of your liver mets diagnosis. Sending thoughts and hugs your way.

I seen my doctor yesterday and asked about the cysts. The cysts on my liver, lung and kidneys is of no concern to my doctor even with my breast cancer history. He stated that he could line up a bunch of women my age without my history and they would have the cysts. That made me feel relieved. As for the ovarian cysts those we will follow every 3 months until they can get me an appointment with an oncologist gynecologist. So I guess I trust him and enjoy not having a ton of scans and doctor's appointments for now.

Take care.

Dear What...,

I was originally diagnosed I 2003 with ILC; single site metastasis in 2006 on my cervix was found by my gyn. Diagnosed this May with mets to liver. ILC is sneaky, and my tumor markers were going up for a year before anything showed up on scans. I was very vigilant once the TMs started going up -- asked every doc to whom I go what scan would show something. I had repeat CTs and nuclear bone scans; had a breast MRI because I wondered if it could be local recurrence; had a PET/CT. Nothing showed up for months. Finally, in May, my CT showed a little "wrinkle" in my liver; PET/CT verified something was there, but not what. MRI of my abdomen with contrast was the only thing that showed the actual lesions on my liver. So basically, I don't know the answer here. Docs seem aware that some scans show more than others. However, they generally try to err on the side of fewer scans if they can. At this point in time, if I had known that the MRI sensitivity seemed to be better than the other tests, I would have pushed for one sooner. Also, I would have pushed for 3 month scans rather than 6 months. But what's done is done.

I would tell you to simply be very vigilant, and to keep the lines of communication open with your MO and with your primary care physician. Many, many BC folks do not have metastasis, and so I would simply try to keep that in mind as well.

Good luck!

Bev

Whatjusthappened (great name), I will respond to several of your questions.

Regarding finding mets early, my view is that while finding them earlier might or might not change a person's longevity (response to treatment is very important), it may improve one's quality of life. For example, finding ER+ liver mets when they can be treated with endocrine therapy instead of emergency IV chemo with accompanying hair loss. Or, finding and treating bone mets before they have a chance to cause a fracture.

It appears that for ILC ascites from peritoneal mets, CT with Contrast is the most helpful imaging. So for an ILC patient with abdominal bloating and pain an onc would probably order this scan.

Regarding low recurrence risk, yes that should be encouraging, but do not let your MO act as if low risk means no risk. Someone, unfortunately, will be in the unlucky 3%. (Me) You are concerned about your lungs and bones, and you want to feel confident that your onc is taking you seriously and doing the appropriate scans. I hope you can either meet with your onc to talk more about this, or get a second opinion at a NCCN center. One thing that should not be forgotten is a simple physical exam, as in pressing around and asking if anything hurts.

You know that MRI showed the ILC in your breast, so if you have symptoms in the future and a choice of scan modality, perhaps your onc would choose MRI.

For me personally, the grade 1 early stage ILC showed up on mammogram, ultrasound, and MRI. The grade 2 mets show up on everything, too (PET-CT, CT with Contrast, MRI, and ultrasound).

Below is an edited version of a post I made a couple years ago.

PET/CT and ILC -- ILC Symposium 2016, Report from ShetlandPony

(This post is based on notes I took at the symposium, and reflects my own understanding. Please consult the literature and your own experts to verify and apply.)

My notes from the radiologist from Memorial Sloan Kettering Cancer Center, New York:

A PET scan uses a radioactive glucose tracer called FDG. Cancer cells tend to metabolize this at a faster rate than normal cells, and thus light up on the scan. According to the doctor, "ILC is often less FDG-avid than IDC." Therefore it is not enough that the radiologist reports "no FDG-avid malignancy". He maintains that "...scrutiny of the CT component of the PET/CT is critical for patients with ILC." The radiologist must pay attention to the anatomic CT features and look for non-avid mets. It is important to use contrast for the CT. [The CT portion of a PET-CT is a poorer quality CT without contrast.] There is a problem with insurance not wanting to pay for a contrast CT and a PET scan in the same day, but same-day is the way to align the PET with the CT. [Realistically your onc can order either a PET-CT or a CT with Contrast, but I doubt on the same day.]

The doctor also pointed out that "...ILC has different propensity for metastatic spread than IDC." Therefore the radiologist should look for gastric (e.g. thickened stomach wall), gynecological, peritoneal, kidney, retro-peritoneal (could indicate kidneys and/or ureter), and other mets.

The scan request sent to radiology may simply say "breast cancer". The radiologist needs to know that the patient has ILC, so he/she will pay attention to the unusual ILC met sites and to possible differences in FDG avidity.

Bone: PET/CT is useful for imaging ILC bone mets. It is more sensitive than a bone scan, and the PET part can show bone mets that the CT can't yet pick up. However, ILC bone mets are more likely to be sclerotic and non-FDG avid than IDC bone mets. While most ILC mets are FDG-avid, about 30% of ILC bone mets are not.

Breast: PET-CT is generally not the best type of imaging for the breast, and has even worse sensitivity for less-avid ILC. Breast MRI is the best type for imaging ILC in the breast.

As ILC becomes more poorly differentiated and aggressive, it becomes more FDG-avid.

I hoped and prayed I’d never find myself posting in this group but here I am - for my sister.

She and I were both DX with BC. Mine was in 2011. I had IDC, Stage 1b, Grade 1. I had a lumpectomy and 33 radiation treatments. I took Tamoxifen for 5 years. My Oncotype score was 11. 8% chance of recurrence. I will be 8 years out this month.

Unfortunately my sister who was DX in 2012 with ILC had a recurrence in 2016 at the MX scar. She had a MX and took Arimidex initially. She had all kinds of problems with being allergic to the blue dye and ended up losing one of her kidneys. It was horrible.

When she had the recurrence she had radiation treatments. She also had to have 2 shots a month.

A few months ago she had severe back pain not relieved by any pain meds. I was afraid of what that meant and sadly my fears came to fruition.The cancer has spread to her stomach which is rare. Her doctors started her chemo regimen and she has had 3 treatments but it is not stopping the progression. We are all devastated.

She and my BIL are coming to town and getting a second opinion from the West Tennessee Cancer Clinic which is where I was treated. Ditto my SIL who was also DX with BC. She will be seeing the head of Oncology. He is one of the best. We will all be there with her.

I am praying for a miracle. A friend suggested she should go to MD Anderson. Whatever it takes.

You guys are going through this. I know it’s heartbreaking. Any hope for my sister? Did anyone else get a second opinion?

Thanks.

Diane

Edwards. My second opinion was with a Breast Cancer specialist and she is the one who gave me great hope even with this diagnosis. As Chrissy mentioned there are many treatment options. I hope for the best for your sister.

Thanks ChriissyB...The seizures are gone and were quite mild. It is thought they were from Tamoxifen. Tamoxifen can cause very mild siezures. The hallucination was looking at my clock seeing 938am and turning my head to look again and it said 10 38 am. That was the only hallucination. It is thought it was just from being overtired and in a rush. Of course not wearing my bifocals. I was told to keep an eye on my symptoms and nothing since I posted. Fingers crossed.

Hi everyone, I would like to know if it's possible to have recurrence at the area between the two chests. I had a left umx in 11/2016 and recent surgery to remove TE in 04/2019. Then a few days ago I noticed a little pouch or puffiness between the two chests. I have no symptoms .

Thank you.

I am currently doing a research study about prediction of breast cancer stage by simply analyzing the degree of each symptoms. It is really possible to detect stage of breast cancer by merely looking on the signs/symptoms? Please help.

Hello,

Am a bit confused about something i have read, so am putting it here so someone might be able to help.

I have just read on a bone mets thread, that stage 4 isnt stage 4 unless its found de novo.

They went onto say, that if you afe originally diagnosed as a stage 2 tumour, but mets are found, you are classed as stage 2 with mets.

Is this right? It goes against everything i have been told thus far.

The individual then posted a definition, please see below.

Is this correct please, Are bone mets, liver mets etc not stage 4 but whatever stage you were at diagnosis plus mets?

Here’s the quote......Here's the staging terminology explanation from the American Cancer Society:

An important point some people have trouble understanding is that the stage of a cancer is determined only when (or soon after) the cancer is diagnosed. This stage does not change over time, even if the cancer shrinks, grows, spreads, or comes back after treatment. The cancer is still referred to by the stage it was given when it was first found and diagnosed, although information about the current extent of the cancer is added (and of course, the treatment is adjusted as needed).

For example, let's say a woman is first diagnosed with stage II breast cancer. The cancer goes away with treatment, but then it comes back and has spread to the bones. The cancer is still called a stage II breast cancer, now with recurrent disease in the bones.

If the breast cancer did not go away with the original treatment and spread to the bones it would be called a stage II breast cancer with bone metastasis. In either case, the original stage does not change and it's not called a stage IV breast cancer. Stage IV breast cancer refers to a cancer that has already spread to a distant part of the body when it's first diagnosed.

This is important to understand because survival statistics and information on treatment by stage for specific cancer types refer to the stage when the cancer was first diagnosed. The survival statistics related to stage II breast cancer that has recurred in the bones may not be the same as the survival statistics for stage IV breast cancer.

At some point you may hear the term "restaging." Restaging is a term sometimes used to describe doing tests to find the extent of the cancer after treatment. This is rarely done, but it may be used to measure the cancer's response to treatment or to assess cancer that has come back (recurred) and will need more treatment. Often the same tests that were done when the cancer was first diagnosed (such as physical exams, imaging tests, biopsies, and maybe surgery) will be done again. After these tests a new stage may be assigned. It's written with a lower-case "r" before the new stage to note that it's different from the stage at diagnosis. The originally diagnosed stage always stays the same. While testing to see the extent of cancer is common during and after treatment, actually assigning a new stage is rarely done, except in clinical trials.

Treehouse,

I think the point is that for statistical purposes, your original stage is the relevant one. But once you've had metastasis to a distant site, my understanding is that it's stage 4, aka "advanced" breast cancer.

I too noted this information and wondered about it.

If you search this site for staging you will find an article and podcast on the latest staging techniques. This article says staging, with the additional information we can now access through tumor testing, is quite fluid.

However MO says once you reach stage IV you are always stage IV. I am currently stage IV NEAD.

If my original stage at diagnosis was maintained I would be stage 0 (having my original diagnosis in 2013 as DCIS).

Hope this helps.

Hi Spoonie,

Sorry for the late response. I'll attach my PET scan of my brain met, I don't have access to my MRI. I don't know that they can differentiate them from lesions for other reasons such as MS without doing a biopsy, but I'm not 100% sure. In my initial report they just called it a lesion and my doctors said it was most likely from breast cancer but they wouldn't know until they tested it. You've probably already met with your doctor by now, so I hope they can give you some clearer answers.

Mom2,

Stroke? Bell's Palsy? Whatever you are experiencing, it's not normal. I wholeheartedly agree with Chrissy. Get to a medical professional other than your oncolgist pronto!

Tina

I did consider the concept of this being a stroke. When it first happened I had just taken a flight to San Francisco from Newark so I was a little worried with tamoxifen that it was a stroke. But it didn’t progress, a didn’t lose any ability to move, and my speech was fine. So I sat and waited to see what happened. It’s been a couple months now and happens quite a few times a day but its not dramatic. I’m just afraid that if I go into an ER or a neurologist it will mean I have take a bunch of time off of work for random tests that tell me nothing. I was hoping if it was something it would get worse and then isn’t know I needed to check it. But when I was reading this forum and people were talking about brain Mets and seizures I thought id check to see if anyone else had this happen to them.