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All TopicsForum: ILC (Invasive Lobular Carcinoma) → Topic: finding those sneaky mets

Topic: finding those sneaky mets

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

Posted on: Oct 12, 2011 12:15PM

kristinpianista wrote:

Hi,
I have a question for you lobular types. How have your mets been discovered? I myself have no breast tumor, no tumor markers either, but extensive mets in my bone marrow and colon. My cancer doesn't show up on scans and has evaded most routine imaging. At the moment, we are trying to figure out if I have growth in my small intestine, which seems to be especially hard to track.

Do we just sit around and wait for some nasty thing to happen? I had an intestinal obstruction once and it's not something I'm anxious to repeat....

Thanks, Kristin

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Apr 8, 2012 03:52PM, edited Apr 8, 2012 03:54PM by texasdonna

Thanks to all you ladies for posting: Kristin, Nancy, WallyCat, Katarina--especially you guys.  It's so comforting to know I'm not alone in the unknowns of ILC.  For the experiences you've each shared and for the different philosophies of dealing with recurrence or the fear of recurrence, please know that your words are so appreciated.  My ILC was detected quite by accident during my 1st mammo ever in 2007. No lump, no symptoms. They did a digital mammo and then recommended a needle biopsy where the ILC was confirmed.

 Since then, no recurrences, but several scares. One turned out to be a surgical suture left in from the mastectomies or reconstruction. I opted for the skin sparing surgery, but don't think I'd do that again after hearing of Nancy's recurrence in the skin.

  For the most part, I've been symptom-free for 4 years, but began having right upper quad and right flank pain last November. Went to dr, had an ultrasound that showed some kidney stones in both kidneys so dropped the ball.  The pain got worse recently, so I followed up with a urologist who ordered a CT of abd/pelvis last week. I'll get the results this coming Wed.

All this is just to say I agree wholeheartedly that we have to fight hard NOT to worry about what could happen, but at the same time, listen to our bodies because we're our own best advocates. Doctors can only search for what we tell them is wrong.  Bloating, early satiety, pain---these are things they can deal with.  A puzzle they can try to solve.  My oncologist told me she didn't need to see me again ever unless I had symptoms, so I took it upon myself to follow up dilligently with my internist and my breast surgeon. And if I ever need another oncologist, I won't go back to that one. 

Hugs to all of you, especially those brave soldiers with mets. Thanks for fighting the fight for all of us and sharing your info.

Donna

Dx 12/18/2007, ILC, <1cm, Stage I, Grade 3, 0/1 nodes, ER+/PR+, HER2-Surgery 01/18/2008 Mastectomy (Both)Surgery 07/24/2008 Reconstruction: Breast implants (permanent) (Both)Surgery 10/12/2008 Prophylactic Ovary Removal (Both)
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Apr 9, 2012 09:19AM momand2kids wrote:

thanks for this conversation--- I am almost 3.5 years out-- and in general feeling great--but then I have a cramp or my hip hurts and I really start to wonder....... I know in the past, there are things I would ignore, and I try to do the same now.... I know my risk of recurrence is low, I am on AI's and lupron, did chemo and radiation---there really is nothing more that I could do to prevent a recurrence... and yet..... sigh.  

It is good to know that there might be studies about ILC_-I am always reluctant to do any sort of internet search because information is so old.  

My onc, who is great, is really not worried about any recurrence--- an annual mammo, MRI, bone density, etc. is all she needs.  As with most, it is about possible symptoms reported from me... and up until now, other than the hip pain, which has been identified as related to a disc, there really no symptoms, so I don' t want to go looking........

Dx 10/29/2008, ILC, 2cm, Stage II, Grade 2, 0/1 nodes, ER+/PR+, HER2-Surgery 11/25/2008 Lumpectomy (Right)Chemotherapy 01/16/2009 AdriamycinRadiation Therapy 03/23/2009 ExternalHormonal Therapy 06/15/2009 Femara
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Apr 10, 2012 02:59AM Katarina wrote:

CamilleL  --- what are the symptoms you are supposed to look with mets to the abdomen? How did they do a biopsy on your liver, pancreas, etc?   

A biopsy was the way they found my breast ILC and by then it was 12.5 cm --- I had been told all along that I had fibroidcystic breasts and nothing to worry about.  5 years of getting mammos and utlrasounds for false security.

I listen to my body now but don't know the symptoms for peritoneal cancer which is more common with ILC cancers.

Hugs  

Dx 1/25/2011, ILC, 6cm+, Stage IIIc, Grade 3, 11/13 nodes, ER+/PR+, HER2-
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Apr 15, 2012 08:15PM dstripling wrote:

My mom's ILC was VERY hard to detect.  Luckily (???), she had a very rare metastasis to the uterus which caused abnormal bleeding.  Even knowing that the cancer was there (through a D&C), it still didn't show up on a PET/CT.  ILC is so very sneaky.

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May 19, 2012 02:51AM Katarina wrote:

Thank you for that reply. It is sneaky, like melanoma.

Dx 1/25/2011, ILC, 6cm+, Stage IIIc, Grade 3, 11/13 nodes, ER+/PR+, HER2-
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Jun 4, 2012 11:55AM mtks wrote:

HI, I've been off the board for awhile but i am back. Have a few ? for anyone...

I was diagnosed 8/2010 ILC left breast/ area 10 o'clock. Stage 1.

I've have joint pain due to Arimidex. I started having bone pain about 6 mo ago and they chaulked it up to the RX. I've had blood in my urine for about a yr now. Can't get in to Urologist til July. The last 3 wks I've had sharp pains in my bone, pretty much all over, knee,top of feet, forearm back shoulder. Pain in the rt flank area. push on my pelvic bone(side and towards the back) it hurt, but also hurts on it's own at times. I have a very tender spot on left colar bone area(the side of my ILC) sharp pain at times. It feels like the pain that brought me to "rule out" the biopsy of my ILC.  I had a bone scan and MRI of my head only(headaches). Haven't heard back yet but the tech said he thought all looked good. What could be going on. The pain is real. ?????  Anyone?

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Jun 4, 2012 01:55PM rakulynda wrote:

Mtks - I think any pain that persists for more than a couple of weeks should be checked out. I wonder why they didn't do a whole body scan instead of just your skull? There's no reason to be in pain, whatever the cause! Get it checked out and here's hoping you get some answers and relief soon. Lynda

Dx 9/2002, ILC, 2cm, Stage I, Grade 2, 0/1 nodes, mets, ER+/PR+, HER2-
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Jun 5, 2012 10:01AM mtks wrote:

Thanks Lynda, the bone pain is a concern but more the collarbone area. I will be persistant. Sometimes I wonder if oncologist forget how sneaky cancer, mine being ILC, can be.

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Jun 22, 2012 10:15AM knittingmama wrote:

mtks; I have collarbone pain too on my cancer side. I had rads to the node area right above my collarbone and asked if it could be leftover SE from that, and doc said probably not.

 Do you have lymphadema symptoms?

I have slight swelling as well that seems aggrevated by changes in weather...I notice a pattern with swelling and pain.

 Just thought I'd throw that out there for you to track and think about.

I too have had neck/chest CT scans, lymph therapies and offers of pain killers to help with the symptoms. It's hard not to panic and think its the cancer coming back. 

The other thing my onc doc said is the SE's of that Arimedex drug can be more of a "soreness" rather than bone pain and it can radiate in different areas of the body. I am taking a drug vacation to see if SEs change, and they have, but I still have that dull collarbone pain. GRRRR....

Faith! Not fear! BRCA-2+, Bi-lateral, no recon.

Dx 11/16/2010, ILC, Stage IIIb, Grade 2, 6/11 nodes, ER+/PR-, HER2-Surgery 12/07/2010 Mastectomy (Right); Lymph Node Removal: Sentinel Lymph Node Dissection, Axillary Lymph Node Dissection (Right); Prophylactic Mastectomy (Left)Chemotherapy 01/24/2011 Adriamycin, Cytoxan, Taxol, TaxotereRadiation Therapy 07/06/2011 ExternalSurgery 11/04/2011 Prophylactic Ovary Removal (Both)Hormonal Therapy 11/16/2011 TamoxifenHormonal Therapy 04/18/2012 Arimidex
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Jun 24, 2012 02:27AM Katarina wrote:

I've been having collarbone pain too, although not consistently. It has made me think something is going on. I didn't get it until after I stopped using Arimidex. It isn't a daily pain though. Best to get it checked out.

Hugs 

Dx 1/25/2011, ILC, 6cm+, Stage IIIc, Grade 3, 11/13 nodes, ER+/PR+, HER2-
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Jul 10, 2012 06:04PM barbe1958 wrote:

To those with collarbone pain, do you have a swelling as well? I had a swelling with visible nodes and nodes mashed together. But once they discovered the tumours on my thyroid (benign) they didn't reassess the neck!!

Please keep us posted.

Religion is for people who are afraid of hell, spirituality is for people who have already been there. (Lakota Nation)

Dx 12/10/2008
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Jul 21, 2012 10:50PM melmcbee wrote:

Omg.... this is so scary

Melanie. mentor smooth round high profile gel 700 rt 550 lt with fat grafting 5/30/2013

Dx 6/24/2012, ILC, 2cm, Stage IIIa, Grade 2, 8/15 nodes, ER+/PR+, HER2-Surgery 07/09/2012 Mastectomy (Both); Lymph Node Removal: Sentinel Lymph Node Dissection (Right)Surgery 08/09/2012 Lymph Node Removal: Axillary Lymph Node Dissection (Right)Chemotherapy 08/23/2012 Adriamycin, Cytoxan, TaxotereRadiation Therapy 01/09/2013 ExternalHormonal Therapy 04/04/2013 ArimidexSurgery 05/30/2013 Reconstruction: Breast implants (permanent) (Both)Surgery 12/04/2013 Reconstruction: Breast implants (permanent) (Right)
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Jul 22, 2012 09:52AM barbe1958 wrote:

mel, it IS scary. Now, don't live the fear, but do be vigilant. Learn your body and push for tests if something has gone on for over 2 weeks that you think is unusual. There is NO cure for breast cancer, but most women will live long and healthy lives after thier diagnosis and die peacefully in their sleep at 99 years old!! We've been hit once, it can happen again. Don't ignore what your body is telling you. That's all.

Religion is for people who are afraid of hell, spirituality is for people who have already been there. (Lakota Nation)

Dx 12/10/2008
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Aug 21, 2012 03:16PM mtks wrote:

The pain right below my collarbone is sometimes "stingy" it gets my attention. There is also some thickening in the area- and an area close to inside of my arm. When I press on it, it hurts. Is this how others with collarbone pain behaves? Does fat necosis have pain? You would think the other side would be the same.?  My PCP said to keep a 2 week journal and if still the same, we would address it further. She could also feel the thickening.I see my Breast care specialist in Sept/ she will probably do an ultasound. I've had this for months. The only diff. is I feel the pain everyday now.

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Aug 21, 2012 08:08PM barbe1958 wrote:

I've had painful fat necrosis because it's pretty solid and it does press on something where it is afterall.

Religion is for people who are afraid of hell, spirituality is for people who have already been there. (Lakota Nation)

Dx 12/10/2008
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Aug 25, 2012 02:17PM butterfly14 wrote:

Being new to this, is ILC more likely to return or metatasize than other cancers? I was diagnosed 7/16/12 and have bilateral mastectomy with reconstruction scheduled for 8/29/12. was told 1.9 to 3.3 cm (if tail cancerous), ER/PR + HER-, not sure about node involvement until surgery. No real treatment plan in place yet, I was advised against radiation because I have lupus and not sure about chemo. Reality is setting in and starting to get nervous.  Any advice/knowledge would be appreciated.
Dx 7/16/2012, ILC, 2cm, Stage IIb, Grade 2, 1/23 nodes, ER+/PR+, HER2-Surgery 08/29/2012 Mastectomy (Both)Surgery 08/29/2012 Reconstruction: Tissue expander placement (Both)Chemotherapy 09/25/2012 Adriamycin, Cytoxan, Taxol
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Aug 25, 2012 06:48PM barbe1958 wrote:

butterfly, I haven't heard that stat about ILC. I do know that ILC is devious, though.

Religion is for people who are afraid of hell, spirituality is for people who have already been there. (Lakota Nation)

Dx 12/10/2008
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Aug 25, 2012 09:20PM butterfly14 wrote:

Thank you Barbe.

Carla 

Dx 7/16/2012, ILC, 2cm, Stage IIb, Grade 2, 1/23 nodes, ER+/PR+, HER2-Surgery 08/29/2012 Mastectomy (Both)Surgery 08/29/2012 Reconstruction: Tissue expander placement (Both)Chemotherapy 09/25/2012 Adriamycin, Cytoxan, Taxol
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Nov 15, 2012 02:59PM, edited Nov 19, 2012 12:03PM by foobs

This Post was deleted by foobs.

ILC STAGE IIIa-- DX 3/9/09 ER+PR+ Her2- Grade I 8/12 LN -- Chemo, Rads Avastin for 1 yr.-- 9/10 Aromasin-- 10/10 BMX & DIEP

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Nov 19, 2012 12:02PM, edited Nov 19, 2012 12:03PM by foobs

This Post was deleted by foobs.

ILC STAGE IIIa-- DX 3/9/09 ER+PR+ Her2- Grade I 8/12 LN -- Chemo, Rads Avastin for 1 yr.-- 9/10 Aromasin-- 10/10 BMX & DIEP

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Nov 28, 2012 07:11PM Astrid wrote:

Hi everyone.

I posted my 1st post in the ILC recurrence thread.

I've been slowly reading thru everyone's posts about ILC.

I have a couple of q's.

How do they know what type your mets are?

Do the lobular mets look different to the ductal type?

As my Onc said chemo is not that effective with ILC compared to Ductal, then you'd think they have to be certain about what type the mets are, to treat them most effectively.

I've had both ductal, and ILC now.

Astrid.

2002:IDC, double mast & axilla clearance, chemo. 2003: recurrence left mast.IDC. rads. 2011:reconstruction 2012: recurrence right mast side ILC. rads.

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Nov 29, 2012 09:38AM barbe1958 wrote:

Astrid, yes each type responds differently depending on the receptors - ER PR and HER2 as well as grade. I'm curious as to how ILC could grow in a mastectomy site!! Lobular is like a sheet sort of, if I understand correctly....

Religion is for people who are afraid of hell, spirituality is for people who have already been there. (Lakota Nation)

Dx 12/10/2008
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Nov 30, 2012 06:58AM Astrid wrote:

Hi Barbe. :-)

Thanks so much for your reply.

Hmm...my lobular was not at all like a sheet. It was hard and irregular.

1.8cms and ER= Prog- Her2 -. I have to look if it says pleomorphic,as I've been reading about that on here. My ductal cancers were both Prog + as well, but I think this is the 1st tumour since I was post menopausal, so that might explain the change there.

I really thought this lob. cancer was just a hard rock of necrotic fat. This is my only experience of it, but I admit to being spooked with all these stories about Lobular. Sneaky indeed!!

As to how they'd treat mets when ductal v lobular..apart from the er/pr/her2 stuff, I meant, if it's lobular..and lobular doesn't respond well to chemo, but ductal does...then how do they determine if the mets came from a ductal, or lobular cancer? A tricky question, I know, but hopefully someone knows the answer. :-) Maybe they look different, and identifiable under a microscope? I'm assuming they can't always biopsy with mets.

Astrid.

ps. Hi 5's, we are born in the same year. :D

2002:IDC, double mast & axilla clearance, chemo. 2003: recurrence left mast.IDC. rads. 2011:reconstruction 2012: recurrence right mast side ILC. rads.

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Dec 2, 2012 09:43AM barbe1958 wrote:

Okay, now I'm officially confused. I googled lobular and it grows in the "milk producing glands". If you've had a mastectomy, you shouldn't have any glands left!!! It is hard to find in a mammogram because of the way it grows:

Invasive Lobular Carcinoma (ILC)
Invasive lobular carcinoma develops in the milk-producing glands (lobules)of the breast. ILC has the ability to spread to other parts of the body, (most commonly bone, brain, liver, and lungs) either through the bloodstream or the lymphatic system. ILC usually presents as an abnormal feeling breast (most often a thickening) and not as a hard mass that can be felt. ILC is less likely to show up on a mammogram.

All breast cancers can spread to other parts of the body the same way. That is not exclusive to ILC. But it is a sneaky little bugger, eh??

Religion is for people who are afraid of hell, spirituality is for people who have already been there. (Lakota Nation)

Dx 12/10/2008
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Dec 2, 2012 10:32AM Momine wrote:

Barbe, yes, ILC is sneaky. Its sneakiness is one reason why many of us with ILC opt for BMX.

Dx 6/1/2011, ILC, 5cm, Stage IIIb, Grade 2, 7/23 nodes, ER+/PR+, HER2-Chemotherapy 06/20/2011 Cytoxan, Ellence, fluorouracil, TaxotereSurgery 09/13/2011 Mastectomy (Both)Radiation Therapy 01/09/2012 ExternalSurgery 03/08/2012 Prophylactic Ovary Removal (Both)Hormonal Therapy 04/01/2012 Femara
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Dec 2, 2012 07:21PM, edited Dec 2, 2012 07:25PM by Astrid

Hmm, yes, that is a good point..I shouldn't have had any ducts either, but I still had a recurrence of ductal in the left breast..a year later. (2003)

At the time, it was thought highly likely that this was a micro met that was left over in the remaining breast tissue.

My double mast was in 2002. So, 10 years later...I don't know how..maybe an expert will...a lobular cancer appeared. It may also have been there originally, in the right breast, and grew slowly in the remaining breast tissue? They never get every bit of breast tissue, even with a double mast.

It is a good question. Barbe. I'm sure I'm not the only person this has happened to.

Oh, hang on..reading my breast report again....

Microscopic Examination:

Sections show fatty breast stroma containing a few benign ducts and lobules, as well as a nodule of BREgrade 2 invasive lobular carcinoma.(nucei 2, tubules3, mitosis 1.)There is some associated LCIS.

Well, there you have it. We apparently have both ducts and lobules present in any remaing breast tissue post mast. Smile

I did not know that.

Anyway, hopefully this kind of thing does not occur very often for the majority of bi lateral mast. patients.

I'm sure hoping it's the last time it happens for me.

2002:IDC, double mast & axilla clearance, chemo. 2003: recurrence left mast.IDC. rads. 2011:reconstruction 2012: recurrence right mast side ILC. rads.

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Dec 3, 2012 09:36AM barbe1958 wrote:

Astrid, did you have nipple-sparing surgery? I told my surgeon to dig deep but got a modified mast on the non-cancer side and a mast on the cancer side. They rarely do radical masts any more. I didn't want to deal with breast cancer again! I think you're right though about a remaining micromet....

Religion is for people who are afraid of hell, spirituality is for people who have already been there. (Lakota Nation)

Dx 12/10/2008
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Dec 3, 2012 05:41PM Astrid wrote:

No barbe, unfortunately i could not have a nipple sparing urgery, but i did have the skin sving double mast.

It looked pretty wrinkly and ugly for 8 years til I finally had the recon. :-D

xx

Astrid.

I think we just have to take each day as it comes. Appreciating every little thing, and the people that matter.

Not expecting the worst..no. Always putting life first, and worries second. Do all we can to stave off any future advances, boosting our immune systems, managing stress etc...after that...who can ever know. :-)

2002:IDC, double mast & axilla clearance, chemo. 2003: recurrence left mast.IDC. rads. 2011:reconstruction 2012: recurrence right mast side ILC. rads.

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Dec 4, 2012 06:34PM barbe1958 wrote:

Astrid, I asked because I was wondering if any ducts were left with the nipples. How about the skin? I still can't see how they could miss it and I feel so bad for you!!

Religion is for people who are afraid of hell, spirituality is for people who have already been there. (Lakota Nation)

Dx 12/10/2008
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Dec 4, 2012 08:26PM, edited Dec 4, 2012 08:28PM by Astrid

The surgeon did not say she thought they missed it originally barbe.

It was the left breast that grew a lump a year later, where they thought it likely.

I assume they think that this lobular just grew in the little remaining breast tissue.

We know now, that ducts and lobules are in fact present in the breast tissue, and we also know that there is always a little left over, even after a mastectomy.

This can occur, but maybe not all that often?

I would hope this doesn't put anyone off from having a double mast. :-)

2002:IDC, double mast & axilla clearance, chemo. 2003: recurrence left mast.IDC. rads. 2011:reconstruction 2012: recurrence right mast side ILC. rads.

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