Scanxiety and Lobular

sueinfl

I am facing MRI results this afternoon for new lumps my Onc found Dec 29. I am under VA health care and Bethesda required an ultrasound first. The radiologist noted just fat tissue from my flap recon in the right breast (never had cancer there) and it was looking good for the left also until she pointed out "just lymph nodes" in the axillary area of left breast. My heart jumped when I saw what I have seen twice before. After clean margins in 2014. Again. After rads following that. After two year of letrozole and its side effects.

Without a physical biopsy, I am fairly sure the rad onc will read the MRI the same way...lymph nodes. I am also pretty sure my med onc, who knows my history, will agree to a surgeon excising it for staining and confirmation. Since some of the toughest chemos (ACT), rads, and letrozole have had no effect on this bugger, I have no idea where to go from here.

With most other cancers, a clean scan is a source of celebration. With lobular, it is "I have been burnt by you before!"

Fighting fears and tears,

Sue

Moderators

Hi Sue, we have no words of advice, but wanted to let you know we're here for you and thinking of you!

Sending all our positive thoughts for good results! Please keep us posted.

--The Mods

wallycat

I wish I had words of comfort. I know scanxiety only too well....I fear a way of life for most of us now.

I can only tell you that MRIs and ultrasounds are not 100% and doctors cannot tell anything by looking AND even if things look the same as they once did, it doesn't mean the results/outcome will be the same. My sister had an MRI that lit up exactly like mine in the exact same place (odd since we are fraternal twins). My biopsy came back cancer; hers b-9. My radiologist looked at my MRI scan before my biopsy and SWORE it was not going to be cancer...her words: "not even 3% chance" and she was wrong. My breast surgeon "assured" me that MRIs are 99% accurate and my 7mm mass would be 7mm. It was 1.8cm. They don't know what they don't know and I wish I could listen to what I am about to type: worrying won't help and it wastes effort and time until you know you need to deal with it.

I wish you the best and I hope the results are not cancer.

Post back to let us know!

Gitane

I hope the biopsy shows benign results, if they decide the biopsy is needed. It is the not-knowing that is so hard. We are holding your hand here in cyber space.

sgreenarch

Dear Sue, here for support. Understand this anxiety. I had something light up on my last MRI and in the redo it was found to be a false positive. Good news but the waiting might have killed me. My surgeon states that that is the downside of MRI's, that they find everything and then we need to check it out. And as ILC patients, we will have to anticipate this. Creates enormous anxiety. What I see from your history, you seem to be a strong woman, dealing with that which you need to deal. The waiting is the hardest part. Hoping for benign. Thinking of you, with you.

sueinfl

Thanks everyone. I thought I had posted a reply yesterday, but must have forgot to make the last click. Here is what I wrote when the Mods first posted:

Thank you so much. I am now living in MD instead of FL and the blizzard delayed the MRI results and my med onc appt. His "assistant," an angel named Rebecca called today to let me know the results of the MRI were "normal" as expected. I will see the doc next week and see where we go from here. I would not be surprised and will be comfortable with waiting 3-6 months for another ultrasound and/or scan. We have a baseline.

On a more interesting note, I have found a circulating tumor cell test that looks promising for lobular. The older types targeted cells that expressed EPCAM, namely ductal, prostate and colorectal cancer cells. Biocept (http://biocept.com/patients) is a company that makes ctc blood tests that target additional markers, including being able to differentiate between live and dead cells. This can not only identify cells released from met sites, but can quantify whether treatment is effective and producing dead cells. The earlier mets can be diagnosed, the more chance for longer survival. Yay!

JohnSmith, who's research and sharing on ILC has been such an amazing help, has even more info on liquid/blood biopsies on this thread:

https://community.breastcancer.org/forum/73/topics...

Accepting and returning all cyber hugs,

Sue

Gitane

Normal is good! I'm happy you received such reassuring news.

Lily55

Great news re blood tests - can we send from anywhere in the world? 

I have so many new lumps I stop feeling myself........right now I  honestly don´t feel I can gtake any more of this stuff but then its that time of year when I get another MRI, that alone is an ordeal as i have such fine veins.........I was sent out of the room last year while other patients would be seen as my veins were so bad and was sitting in the changing room willing my veins to last long enough on something like the 5th attempt........its just a nightmare.....my veins see a needle and collapse......

614

Dear Sue:

I am glad that you received good news.  Thanks for the links.

I totally agree with your comment, "With most other cancers, a clean scan is a source of celebration. With lobular, it is "I have been burnt by you before!""

That statement is the reason why I always worry and never feel totally relieved after a clear mammo/sono/MRI.  I was diagnosed with pleomorphic ILC and bifocal pleomorphic LCIS.  Thank God that I was diagnosed early.  I am extremely lucky and I also found excellent doctors who saved my life. 

After finishing rads in October 2014, I had my 1st mammo/sono 6 months later.  It came back clear although my radiologist said that I had, "tough breasts that are extremely lumpy and bumpy." My RO at M.D. Anderson Cancer Center said that my breasts are "among the most dense that he has ever seen."  I was nervous because I know that lobular carcinoma is not easily detected.  I went to my MO and said that I feel lumps everywhere.  She ordered an MRI.  I had the MRI and 2 suspicious areas were found.  One was biopsied and 7 benign findings were discovered.   The other area could not be biopsied at that time so I was on a 6 month wait and watch protocol.  That area was biopsied 6 months later and Atypical Lobular Hyperplasia was found.  My next mammo/sono will be in 4 more months and then I will have the MRI 6 months later.

This is a roller coaster ride for sure.

I am hoping that you are completely fine and that you will not have any more recurrences.  Good luck.

Dear Wallycat:

Wow.

Dear GreenArch:

I understand the anxiety that you feel.  I feel the same way.  I am so thankful for this website.

sueinfl

Gitane, thanks for the support. :-)

Lily, I am so sorry you have the same worries. If you go to Biocept's website (www.biocept.com), you'll find numbers and email to ask about samples from outside the US. My veins are still holding on, but they do not do us any favors when they require us to not drink anything hours before the scans. Dehydration makes it that much more difficult to get a vein. It would be great if you could identify someone who has the easiest time getting a vein and making sure they'll be available for your next scan.

614, with all the dense areas in both of my breasts, I opted for bilat mx. I as able to get immediate flap recon and thought I was good to go. Apparently, there was a lot of breast tissue left. Add a butcher job of a core biopsy and neoadj chemo that my cancer slept through. Any free cancer cells had 6 months to seed before surgery. I have read posts telling of every combination of treatment and still this stuff can come back.

I am so hoping immunotherapy, where my lymphocytes are primed to recognize my cancer cells (and only my cancer cells), makes it past the clinical trial stage fast enough for all of us.

614

Dear Sue:

I hope that the immunotherapy works for you.  I hope you can be a part of the clinical trials.  Good luck.  I am praying for you.

sueinfl

Thanks, 614!

614

You're welcome!  I wish you the best.

sueinfl

The VA in Baltimore has given me the go ahead to have my blood drawn and tested for circulating tumor cells this Wednesday. The cost will be out of my pocket, but I think worth it. I am possibly in denial, but I do not feel the anxiety that I did with the MRI. There are several members of another website with lobular who appear to have reliable results. It's new technology, but we have to start somewhere. This will be a baseline and I will probably aim to be retested in three months to look for a trend.

Sue

614

Dear Sue:

It is great that there is new technology.  Good luck.  I am hoping that you have good/negative results.

Anonymous

Sue--are you referring to blood tests for tumor markers? (or something else?) My oncologist did tumor markers on me for the first 3 or 4 years every 6 months.

Anne

JohnSmith

I believe Sue is referring to the emerging field of "Liquid Biopsies" that measure ctDNA (circulating tumor DNA).

614

Thanks John.  You are a wealth of information.  I really appreciate you.

Peppin

I had circulating tumour cells measured after surgery, before I started chemo. No positive cells were found. Possibly because at that point I could not (and still cannot) believe that something could go well for a change, I got doubts as to whether the test could discriminate my tumour cells. I find it unlikely not to have had any tumour cells in my blood at that stage because I had macrometastasis in one lymph node. I think it is more likely that the markers they use to recognise the tumour cells were just not present in my case. So if tumour cells are detected, one can be reassured that the test is detecting one's tumour cells. But if no tumour cells are detected - it could either mean that there really aren't many around (may be even none) or the markers the test uses on the tumour cells are not present.

I do test the regular breast cancer tumour marker once a year or so. I am relieved that that was high at the start and decreased to normal after chemo. I think that is a good sign. I am told though that I should not worry if it increases a bit as some fluctuation is not necessarily a sign of recurrence.

It is a developing field. There are articles saying that dogs can detect cancer - that would be great. At least we wouldn't have to wait for test dates and for results to come out if we get a pet!

sueinfl

Thanks for the info, Peppin. I did some research into the testing. The first test I looked into, CellSearch, is used by Mayo, but when the rep asked whether I needed the test for breast, prostate or colon, I researched what exactly they were looking for. In that test's case, it was EPCAM, a transmembrane glycoprotein that is present in ductal, but poorly expressed in lobular. I was really disappointed, but then found Biocept's test through two other lobular ladies.

Here's hoping it is accurate in my case. I go for the blood draw tomorrow and hope the results will not be too long in coming. Tumor markers have never been indicative of disease in my case, nor has PET or any other scan.

Thanks for the positive thoughts, 614, and thanks for the clarification, John!

Sue

614

Dear Sue and Peppin:

I wish both of you the best.  Good luck.

Peppin

I had the Cellsearch test. Do keep us updated. And thanks.

sueinfl

The oncology assistant at the VA, an angel named Rebecca, called to let me know the results of the Biocept ctc test. CK+ was 0, CK- was 13. Now I have to wait on the current onc on rotation to talk to the director at Biocept to learn of the interpretation of the results.

From what I have gleaned online, CK- represents cancer stem cells and are, obviously, not something I would want swimming around. I hope my onc will call me sooner than later. While Rebecca understands the anxiety of waiting on results, he hasn't quite caught on yet.

Now I have more researching to do. Will post as soon as I hear the interp. Think I will start a thread to see if anyone else has tried Biocept's test.

Sue

614

Dear Sue:  Good luck and I hope that you get an explanation soon.  I do not know how to interpret those results.  I hope that those numbers represent good news for you.

Lunalin

I know, very well how skeptical you feel. I was diagnosed with a recurrence after 10 years. When the cancer came back it was, again 5 cm. I now see changes in my surgical site and will see my surgeon this week. I am never at ease. I just don't know what more they can take away, after a radical in 11/14. I am just ribs and I see every ounce I gain or lose.

sueinfl

Thanks, 614. I am hoping I'll find out more tomorrow.

Best of luck, Lunalin. Did you have rads, too? I am wondering whether even the 35 days of rads I had to the area was able to do the job. Rads only work if the cell is dividing and lobular is famously slow at it.

That will be the next big question. Where are the circulating cells originating. Okay, the big question will be, what the h*ll can be done about it. ;-)

Leslie13

I finally have a PET scan authorized, which I've wanted since initial diagnosis. I've received TX and I had abdominal pain before breast cancer DX. Femara decreased the amount of pain, however it's still with me. But I've had great difficulty having someone order a PET scan.

My Aunt, who was dx'd with IDC 10 years ago has now been dx'd with ovarian cancer. So along with my other points: bi-lateral ILC where surgery was delayed too long; found several micro-mets with an ALND; declined chemo from poor clinical results on ILC; ILC is a sneaky bastard, my risk factors more than justify a scan ... Been asking for more powerful hormone-based med, but told would need recurrence.

So now it's been ordered. And I feel like it's "be careful what you wish for." Sometimes I wonder how long our cancer lives with us without doing too much damage, and we come in so aggressively that we harm ourselves more, earlier

It's tiring, studying and trying to make the best decisions with this disease. And I can't say I'm looking forward to that wait time after the test

614

Good luck to everyone here. 

sueinfl

Leslie, PET scans showed very low uptake for my tumors. Your onc may dismiss the results as inconsequential. Please persevere. Abdominal mets can be particularly hard to diagnose since lobular cells look like fat cells. Many women end up having to have exploratory surgery to find suspicious tissue to biopsy. The toughest part of lobular seems to be convincing our docs that it's there.

All that being said, I wish you unequivocally clean scans and peace during the wait.

Thanks for the wishes, 614

614

Thanks for mentioning that lobular cells look like fat cells.  That is extremely good info to have.

Leslie13

Hi 614,

If Lobular cells look like fat cells in the abdomen, I'm in trouble! Always had a flat tummy until they took my hormones away. Think I've gained 10 lbs and lost a good deal of muscle strength and shape since DX. Cancer forced me to put off hip replacement surgery, (THR) (which I've posted multiple times)! Monday I'm having "Foob" reconstruction as my right breast is being strangled by scar tissue, and another source of bad pain if I don't fix it prior to the THR which is scheduled for 4/18, praise the Lord!

I'm not thinking that much about the PET scan. My Dr. will require me to come in to hear the results, and it won't be next week. I never get phone results ... Does anyone? Even good results. They want to bill for a dr. visit.

I know the test is full of false positives and negatives. My primary goal is to have my Dr. add a more potent endocrine med.

I suspect I'm developing resistance to Femara: my surgery biopsy showed my positive PR level had really dropped to almost 0, which I read is a sign. Hot sweats and other symptoms are easier, and the young men on TV are looking far more enticing. Perhaps thenew fat is adding more ER ... My intuition tells me I need more aggressive treatment, but that can mean eating the best foods, exercise, and laughing more! Most of us are learning not to accept the first round of damaging, ineffective chemo -- we that research and ask questions about what's different about ILC? I just wish we had better answers.