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Topic: ILC Follow up testing/treatment

Forum: ILC (Invasive Lobular Carcinoma) — Just diagnosed, in treatment, or finished treatment for ILC.

Posted on: May 25, 2019 10:00AM

Mavericksmom wrote:

I have seen this topic mixed in other ILC threads but didn't see one dedicated to it. (If I missed it I apologize.)

I had a mastectomy, no nodes removed because fat pad with 24 nodes was removed in 2003 when I had lumpectomy for IDC, and I'm now on Letrozole.

After learning of the other places ILC can spread, like the intestines, mesentery, ovaries, I am wondering what tests are recommended for ILC. I will see my MO in June. If your doctor recommended a particular test, I would like to know so I can ask my doctor about it. I know there are others who would like to know as well.

I am particularly concerned with the mesentery because I don't know what symptoms metastasis to the mesentery presents with. One of my CT scans indicated a "hazy" area in the upper mesentery, but my doctors didn't even mention it to me, so I don't think they were concerned. I read about it when I downloaded a copy of my report, but the radiologist didn't even mention it in the "conclusion."  It was only mentioned in the section about the intestines and mesentery, again indicating to me that it wasn't thought to be abnormal.

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May 26, 2019 06:07AM - edited May 26, 2019 06:08AM by claireinaz

Right now, most MOs will order CBCs every follow up visit and look for particular values from those tests that indicate a problem. They will do a physical exam but I'd do those breast self exams yourself and check under your armpits too--every single month. It's fairly rare but b.c. can recur in the skin left after surgery. Mammos with ultrasound, or even better, MRIs are the gold standard to find recurrence since ILC has a tendency to hide from mere mammos. You can request a yearly MRI if your insurance will pay for it, but sometimes unless you have some indication of a problem area insurance companies won't. Do ask for both a mammo and US, though, every year.

My plastic surgeon ordered a breast MRI to see how my implants were doing--and I also found out that no detectable breast tissue was reported, so that made me happy. But the scan was ordered as a post-surgery check, and not to try to find any cancer.

My doc has me fill out a checklist regarding pain or other physical changes, and I suppose if I reported pain for more than 2 weeks or weight loss, he'd jump on that--but I'd have already known those symptoms were serious and have made an appt way before a regular follow up visit, of course.

I did request and get a blood test to check my estrogen levels; I wanted to see if they were being suppressed by my AI, so you could do that.

Most docs won't do a CTC--circulating tumor cell test (blood is drawn and tested for tumor cells)--because they aren't that accurate on their own. Kind of looking through a keyhole and seeing part of a room and thinking that you've seen the whole house, if you get my drift. Unless you can look at all our blood content at once, cells can be missed, or alternately a stray cell could be caught that hasn't yet been destroyed by our white cells, which happens in people who never had cancer in the first place.

In short, blood tests and physical exams with yearly scans of some kind are really the only follow up care for us. If you want something more, you have to ask for it particularly and be ready to justify why you want it.

Hope that helps! Others will weigh in on advice, too. (I don't know what a mesenry is--so you'll have to translate).

Claire in AZ

9/29/11 ILC, 2 c. stage II grade 1, ER/PR+ HER2-, 6/11 nodes, lumpectomy, DDAC x 4, Taxol x 12, 33 rads, Tamoxifen/arimidex/aromasin, BMX/immed recon 7/3/13 "In the midst of winter, I found in me an invincible summer.” Albert Camus
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May 26, 2019 08:46AM Mavericksmom wrote:

Claire, thank you! You answered my question perfectly! You have no idea how appreciated your response was! My MO has ordered CBC and metabolic panel. I feel much better after reading your response. As I said in another thread, I feel like I should be an expert at this after going through breast cancer twice, but nothing could be further from the truth! Different type of cancer, IDC in 2003, and now ILC, came with new questions, and honestly so much change in 16 years. Also, I forgot so much, mainly because it caused a lot of emotional pain to revisit the past.

Thank you!

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May 26, 2019 06:54PM momand2kids wrote:

I have a clinical exam with onc and a mammogram every year- and an MRI now every other year (it was annual for a while). My onc says if something lasts for longer than 2 weeks let her know-- she also says that if something was wrong, I would know before her. I figure with all the appointments I have now (onc, edno (for thyroid), gyn, dermatologist, colonoscopy (every 3 yrs), dentist--you name it... if something is wrong, we will know it!!!

Dx 10/29/2008, ILC, 2cm, Stage IIA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 11/25/2008 Lumpectomy: Right Chemotherapy 1/16/2009 Adriamycin (doxorubicin) Radiation Therapy 3/23/2009 Breast Hormonal Therapy 6/15/2009 Femara (letrozole)
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May 27, 2019 07:23AM claireinaz wrote:

Hi Mavericksmom,

You are welcome! And I forgot to mention one more characteristic of ILC--it has a bit higher tendency to recur later rather than earlier, so current research supports (if we can handle it) being on an AI for 10 years at least, (more research is underway to see if AIs keep us from recurring longer than 10 years even) and not the requisite 5 that those who have some other type of hormone + b.c. are prescribed.

In other words we have to be diligent about taking care of ourselves and not think we are out of the woods if we get through 5 years.

We got the slower-growing kind of c, but it has its own problems, as do all diseases. My current approach is to tx it like it is a chronic disease-I have no evidence of it now, but there are things I have to do for the rest of my life in order to give myself the best chance of survival.

So far I've had no real ill effects from the Aromasin I take, but the Arimidex I was on for 18 months was horrible for me. So last bit of advice: if you are on one AI that brings side effects you can't manage, get to your MO and ask them to switch you to another. Some women do terribly on Aromasin and great on Arimidex; I was the opposite. Some do well on Femara, some don't. Don't give up or stop taking the AI if you are on one--tell your doc asap. We really are the ones who care more about our health than anyone else, but we have to get proactive about fiercely protecting it, too.

Claire in AZ

9/29/11 ILC, 2 c. stage II grade 1, ER/PR+ HER2-, 6/11 nodes, lumpectomy, DDAC x 4, Taxol x 12, 33 rads, Tamoxifen/arimidex/aromasin, BMX/immed recon 7/3/13 "In the midst of winter, I found in me an invincible summer.” Albert Camus
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May 27, 2019 12:23PM Mavericksmom wrote:

Thank you Claire!!!! I have been on Letrozole for a little over a month. I didn’t want to take it, still worried about it causing me to get Alzheimer’s as my mom had that. There are links they are studying now, between Alzheimer’s and AI’s. It has to do with estrogen in the brain. My MO talked me into taking it. I feel like I am caught between a rock and a hard place! Kind of like “pick your poison!”

I agree, I want to do whatever I can to prevent it from recurring or metastasizing. I would NEVER think I’m cured! I fell for not that trap after I had IDC on 2003. After 5 years my doctors said it was unlikely I would ever get it again. After 10 years, they said It was extremely unlikely I would get it again, that I was probably cured, but they can’t say that. 15 1/2 years later, bam! ILC! I think it was at least six weeks after my mastectomy when it really sank in that I had cancer again!

Out of curiosity, did you get genetic testing and if so, which tests. I had tests in 2004 and agin in ~2011. I am neg for BRCA genes. I was supposed to see a genetic counselor in June but canceled because emotionally I am not ready. Also, it isn’t cheap and right now coming off four months on disability, money is tight. I haven’t ruled it out. My MO is part of the Risk Assessment team at the cancer hospital I go to so I am sure she will bring up the subject again, especially now that another of my sisters was diagnosed with IDC.

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May 28, 2019 03:24PM jessie123 wrote:

Maverickesmom -- OMG -- I didn't know they are looking at the possibility that the Al's cause Alzheimers. Both of my parents had dementia -- never really knew what type. I realized something was wrong with mom when she came to my husband's funeral in purple stockings. I cared for them in my home (with the help of sitters) for 12 years and the last couple of years my mom was bed bound, could not turn over by herself, had to be fed --- the whole thing was horrible to watch. Dad was 88 and mom was 92 at death. When I got breast cancer I thought -- oh my gosh, who is going to take me to have my MRI and Mammogram when I get Alzheimers later in life.

Dx 11/2018, LCIS/ILC, Left, 2cm, Stage IB, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 2/21/2019 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 4/14/2019 Whole-breast: Breast
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May 28, 2019 04:18PM - edited May 28, 2019 04:22PM by Mavericksmom

Jessie, let me clarify, it isn't that AI's cause Alzheimer's but rather that they decrease estrogen in the brain and since estrogen plays a big part in cognitive thinking, some researchers believe AI's might have a link to Alzheimer's. Women who took hormonal therapy for menopause symptoms at certain ages, which increased their estrogen levels, had low incidence of Alzheimer's disease. They are trying to determine if AI's contribute to low estrogen in the brain thus causing someone who would eventually get Alzheimer's, to get it earlier or worse.

I will try to find the studies I read and post them. I have a family history of Alzheimer's so this concerns me. That said, a breast cancer recurrence or metastasis also concerns me. Ther is a lot of research on AI's preventing breast cancer from recurring but they are just starting to study AI'S and possible links to Alzheimer's disease.


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May 28, 2019 04:36PM Mavericksmom wrote:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5651179/

This is one study that mention AI’s and Alzheimer’s disease, but the study itself is about exercise and AI’s.

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May 29, 2019 04:49AM dtad wrote:

Hi everyone. Thanks for posting the study. IMO there has always been evidence that the brain needs estrogen. Most of our vital organs do. That's why when we are deprived of it there are so many symptoms. I'ts normal to be conflicted. Guess we just have to make our own informed decisions and then hope for the best!

Dx 3/20/2015, IDC, Left, 1cm, Stage IA, Grade 2, ER+/PR+, HER2- Dx 4/10/2015, ILC, 1cm, Stage IA, Grade 2, ER+/PR+, HER2- Surgery 5/21/2015 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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May 29, 2019 07:21AM claireinaz wrote:

MM, no, I didn't get genetic testing. I was asked if anyone in my family had a dx of b.c., and when I replied in the negative they didn't pursue it. I had one NP tell me that there was little chance of BRCA because I had no women in my family that had been dx.

However, I am a "downwinder". We are US citizens who were exposed to radioactive fallout from the the Nevada test site above ground nuclear testing from 1951-1962. I was 3 when the last nuclear test was performed, and living in the fallout area (No. AZ) so I was exposed. in the 1990s we were awarded the RECA--Radiation Exposure Compensation Act. Those who were at the test site, those who mined uranium, and those who were in the fallout path of the testing--were awarded $100,000, 50,000, and 75,000 respectively if we could show proof that we qualified and had contracted the cancers on the list (b.c. was one, there were others: lung, thyroid, etc.). I could--and did--and received an award.

So the US government quantified my life at $50 grand.

Above all else, I consider my radioactive exposure at age 3 as part of the reason why I got cancer.

Claire in AZ

9/29/11 ILC, 2 c. stage II grade 1, ER/PR+ HER2-, 6/11 nodes, lumpectomy, DDAC x 4, Taxol x 12, 33 rads, Tamoxifen/arimidex/aromasin, BMX/immed recon 7/3/13 "In the midst of winter, I found in me an invincible summer.” Albert Camus
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May 29, 2019 08:26AM - edited May 29, 2019 09:57AM by Gracejoy

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3044608/?report=reader


https://www.ncbi.nlm.nih.gov/core/lw/2.0/html/tileshop_pmc/tileshop_pmc_inline.html?title=Click%20on%20image%20to%20zoom&p=PMC3&id=3044608_nihms264658f2.jpga

Above published results from BIG I-98 clinical study on a large group of 8010 patients. They looked at the cognitive function in patients who were treated with Letrazole or Tamoxifen for 5 years. They show that 1year after stopping these medications patients had improved cognitive function. This improvement was more in Letrazole group as compare to Tamoxifen group of patients.

I think I am happy to see this study indicating an improvement in memory once stopping the Letrazole. We are back to normal or improved in brain function.

Dx 5/26/2014, ILC, Right, 6cm+, Stage IIIA, Grade 2, 1/10 nodes, ER+/PR+, HER2- Surgery 6/25/2014 Mastectomy: Right Hormonal Therapy 9/9/2014 Femara (letrozole), Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone), Zoladex (goserelin) Radiation Therapy 10/25/2014 Whole-breast: Breast, Lymph nodes, Chest wall
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May 30, 2019 01:28PM - edited May 30, 2019 04:33PM by vlnrph

For our original poster, mavericksmom, regarding the question of abdominal metastatic disease: I don't believe there are specific tests for ILC spreading to those areas. In fact, I think it may be somewhat like ovarian cancer - vague sensations of fullness or bloating at first.

When more advanced, peritoneal carcinomatosis may be the result. That would involve ascites/fluid collection which can be drained periodically. So, the best advice might be to know your body and, as suggested above, report unusual symptoms.

IDC too! 🎻💊👪🐩 🇫🇮 🌹🦋 Rt MX+DIEP 4-2011; ALND 5-2011 d/t micromets; TC X 4; tamoxifen; lymphedema 9-2011; switch to letrozole 3-2014 for 1 yr; bone mets 8-2018: Zometa, rads to spine, Faslodex/Versenio Dx 3/7/2011, ILC, 2cm, Stage IIA, Grade 2, 1/25 nodes, ER+/PR+, HER2-
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May 30, 2019 02:07PM Mavericksmom wrote:

vinrph, Thank you! I found your comments very helpful! Ironically, knowing my body is what helped to get my recent ILC diagnosis. I felt pain, deep inside my breast that would come and go but always in the same spot. I never thought it was cancer because I had always been told that breast cancer doesn't cause pain, but I knew something wasn't right so I spoke to my gynecologist who ordered the diagnostic mammogram. If I hadn't felt the pain, who knows how long it would have been before I would have been diagnosed?

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May 30, 2019 05:23PM vlnrph wrote:

As far as genetics, it sounds like maverick may have more than one sister with BC. Should that be the case, perhaps one of them could receive counseling especially if they are younger/pre-menopausal. Then, once they accept the option of testing, any mutation found could mean that you only need analysis for that variant which theoretically costs less than doing an entire panel.

Prices, even for just BRCA, have come way down in the US during the past five years since the Myriad labs 'patent' was set aside by the Supreme Court. So, whoever has the records from 2011 may be able to update family history in addition to those earlier results which would hopefully streamline the process.

However, it is important to have any life or other insurance you may want to have put in place first. While health coverage is protected by GINA legislation, other policies are not and could be more expensive or difficult to obtain.

IDC too! 🎻💊👪🐩 🇫🇮 🌹🦋 Rt MX+DIEP 4-2011; ALND 5-2011 d/t micromets; TC X 4; tamoxifen; lymphedema 9-2011; switch to letrozole 3-2014 for 1 yr; bone mets 8-2018: Zometa, rads to spine, Faslodex/Versenio Dx 3/7/2011, ILC, 2cm, Stage IIA, Grade 2, 1/25 nodes, ER+/PR+, HER2-
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May 30, 2019 08:39PM karen1956 wrote:

I'm 13 years out since Dx. My oncologist still follows me every 6 months. Just before visit, blood draws for lab - CBC, CMP and tumor makers. He takes a history and does an exam. No scans. I had BRCA1 and 2 testing when I was diagnosed and a couple years ago had one of the newer 29 panel testing.

Karen in Denver, Dx 02/03/2006, ILC, stage IIIa, ER/PR+, HER2-,
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May 31, 2019 10:09AM claireinaz wrote:

My oncologist doesn't test for tumor markers--at least my old one didn't. We'll see what my new one looks for.

Oftentimes our intuition is one of our best defenses (note I didn't say always: I can hyperventilate about small pains, etc. because I have medical anxiety at times, too). As for abdominal metastasis, vlnr is right--similar to ovarian cancer. I also think any kind of deep lower back pain should be reported (after 2 weeks).

Again, my newer approach is to consider my dx like a chronic disease, because I know millions of people live long healthy lives with all kinds of chronic diseases when they are treated properly. I correct those who ask me how long I've been "in remission" (old language) and tell them I'm currently NED, never mention how many years, and tell them I have to monitor my health for any sign of problems the rest of my life.

For some reason (right now) it makes it easier for me to handle the fear.

Claire in AZ

9/29/11 ILC, 2 c. stage II grade 1, ER/PR+ HER2-, 6/11 nodes, lumpectomy, DDAC x 4, Taxol x 12, 33 rads, Tamoxifen/arimidex/aromasin, BMX/immed recon 7/3/13 "In the midst of winter, I found in me an invincible summer.” Albert Camus

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