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Topic: blood tests by oncologist

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

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Posted on: Jun 24, 2008 09:53AM

GayleB wrote:

I was dx with ILC in the left breast in Jan 08, and had bi-lat with recon Feb 08.  There was no cancer in the right breast, I opted for the bi-lat for many of the same reasons others did.  I am nearly finished with the recon, having the nipple recon/tattooing scheduled for Jul 08. 

My onc said that there were no tests to determine the recurrence of the cancer.  He said that the patient just starts exhibiting "symptoms" (whatever that means).  But, ever 3 months when I go to see him, the tech draws blood.  Why?  I have a friend with ovarian cancer, and she has blood tests to check for cancer antigens.  So, what's up with "no tests for recurrence" ?  I plan to discuss this with the onc next visit, but I wondered what others are experiencing.  The more informed I am, the better able I am to make a decision.  If anyone has other questions to suggest for me to ask my onc, I would appreciate it.  Actually, this is the 2d onc I have seen.  I just don't seem to be able to find one that "clicks", if that makes sense. 

I wasn't a radiation candidate, and opted against chemo.  But I am taking Arimidex with minimal SEs.  I already have heart disease, and the benefits of chemo (3%) were far outweighed by the risks to my heart, lungs, etc.  Sorry to ramble, but I wasn't sure what info would be helpful.

Dx 1/8/2008, ILC, 1cm, Stage II, Grade 1, 1/6 nodes, ER+/PR+, HER2-
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Jun 24, 2008 10:06PM Gitane wrote:

I wrote you this humungous post explaining a bunch of stuff about my blood tests, then lost it.  Probably just as well as I talk too much.  Short and sweet......I have blood tests to monitor my health and the CA 15-3 tumor marker test every 3 months to watch for recurrence.  I told the onc I don't want to know the results unless he feels it would be of benefit to me, and that's the way we do it.  I don't have any scans.

I think you are wise to find an oncologist who communicates well and who inspires conficence.  There's nothing more important to a cancer patient.  Keep in touch!  We ILC ladies are few and far between and need company, 

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Jun 25, 2008 08:51AM LauraGTO wrote:

Hi there...

I finished treatment in June of 2006. Ever since, I have gone every 3 months for blood work. My Onc (I am fortunate...I trust him and really respect him) checks for elevated Liver enzymes...an early sign of possible Liver mets, anemia (because I'm on the thin side), vitamin defincies (to make sure I'm taking the correct amount of vitamins) and the white and red blood cell counts (not sure...but I think irregular counts can be indicative of cancer). In my last visit - he said we can skip blood draws and start doing them every other visit if I wanted to...that would be blood draws every 6 months instead of every 3. I think I'm ready for that...although he assured me if I choose to, and if I feel nervous at any point, I can go there and get the blood work done at any time. Also, at each visit, he also does an exam of both Mast sites, and feels under my armpits for any enlarged nodes.

Hope this helps! Best wishes to you. 

(btw...I didn't have tumor markers done at dx...)

With hope there are possibilities. Dx 7/2005, ILC, 4cm, Stage IIB, Grade 2, 1/11 nodes, ER+/PR+, HER2-
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Jun 25, 2008 09:02AM wishiwere wrote:

Geepers!  They are all so different!  You onco actually touches you?  :D  Kidding, but....the only time my has touched me, is to shake hands when he enters, to listen to my heart and lungs and that's IT!  NOTHING MORE!  He's never even seen my mast site, which I thought was wierd.  Then again he's never mentioned what to watch for in signs of recurrence, or anything since. 

He does have blood draws for Comp and metabolics and the CA27-29.  My understanding is that those markers aren't consistently something they can watch.  Many don't change with a recurrence, so I'm not sold on them.  The comp and metab, are to watch for as you say, signs or damage also, from the chemo too.  I'm ready to stop this 3 month thing, and I'm also ready to switch onco's to someone who 'deals' with BC, as this one stated under his breath at my last visit that he doesn't 'normally deal with BC pts!'! UGH!  No wonder I've felt inadequately cared for! :(

I have heard that Ovarian Can test are very good at indicating recurrence for that though.

wishiwere~ Path read stage 1C- 1st Primary was IDC w/DCIS 1.4 cm, ER/PR+ & HER2- Dx 9/21/2007, ILC, 1cm, Stage IB, Grade 2, 0/4 nodes, ER+/PR+, HER2-
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Jun 25, 2008 09:26AM GayleB wrote:

Thanks, ladies:).  I am a heart patient, too (gee, lucky me to get the top two killers of women;)).  So, every four months I have a lab work-up that covers pretty much everything, and my GP said that she could add whatever the onc wanted and that would eliminate overkill (no pun intended).  This onc does examine me and my BCS does breast exam too.  The BCS said that if I see him twice a year and the onc twice a year and they are both doing thorough breast exams on alternating basis (that would be every 3 months) he would be happy. 

About the onc, I knew from the beginning that this would be a long-term relationship, and I am on my second onc.  This one is better than the first (who was really cute, but full of himself) and I have gotten lots of positive feedback about him from others.  So, I will stay with him a while longer and see how it goes.  wishiwere, I would definitely find a new onc if I were you--what a tacky onc! 

Dx 1/8/2008, ILC, 1cm, Stage II, Grade 1, 1/6 nodes, ER+/PR+, HER2-
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Jun 25, 2008 10:57AM melmedic06 wrote:

i posted a long reply as well last night but could not get it to post- i am 4 years out from my ILC dx in october of 04- 0.9 cms- 0/5 nodes- lumpectomy-radiation-arimidex- i see my oncologist every 6 months now and he always draws a CBC- which watches WBC's- RBC's- hemoglobin- hemotocrit- platelets and a few others that might indicate infection- he also draws a CEA and a CA 27.29- there is alot of controversy about these tests- sometimes referred to as tumor markers- some oncologist put alot of credence into them- others pay basically no attention to them- the CEA is looking at the epithelial tissue of the breasts and ovaries and is sometimes a very early indicator of recurrence- do you still have your ovaries? (sorry- that was personal) the CA 27.29 also watches for any inflammatory process would might indicate a tumor starting to grow- my CEA has been from 0.9 to 2.3 -all within normal range (0.0 to 3.0) and my CA 27.29 has always been below 15.0 (normal range below 38.0) - i feel more protected knowing these lab results every 6 months but everyone is different- hopefully you are getting some answers to your question and will be able to make a comfortable decision- keep the faith-
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Jun 25, 2008 12:15PM GayleB wrote:

Thanks, melmedic.  I do have my ovaries, not that they every did much;).  But, I am 61, and post-menopausal.  I had a bi-lat, so I don't know that a blood tests would help much there.  I know that my onc does a CBC, but so does my GP and it seemed redundant to me to have the same tests run within a few days of each other when one will do.  This all came up because I had three sets of labs done within two weeks of each other and most of the same tests run by different doctors.  They are only drawing blood from my left arm because of the node dissection on the left side, and the lab tech said my veins are pretty good, but not that good and we needed to consolidate if possible.  The GP was in agreement.  So, when I see the onc, I will discuss this with him.  I know he does one other test besides the CBC, but don't know what it is.  And, given his statement about there being no test for recurrence, I don't think he is doing a CEA, but he may be.  I'll find out--before they draw blood this time!  I have to have lab work prior to surgery Jul 21, so I would like to have a one-time draw and make everyone happy.  Thanks for the information--I didn't know about all of this.  Gracious--we really have to educate ourselves, don't we:)?

Dx 1/8/2008, ILC, 1cm, Stage II, Grade 1, 1/6 nodes, ER+/PR+, HER2-
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Jun 25, 2008 09:06PM SammieKay wrote:

Hi fellow "lobs",

This is the first time I have posted here.  I was diagnosed in Nov.06.  I finished chemo last July  07.  I opted out of radiation as I had bilateral mastectomies and there was no breast cancer cells in any of the tissue removed.  Couldn't see what good radiation would do.  I have an oncologist at MD Anderson in Houston and one here in Victoria,TX.  The onc at MD ordered my chemo and the onc here in town administered it.

The onc. at MD told me he didn't do any post testing because it "would just drive me crazy".  He said they show a lot of false positives and you go through a lot of biopsies and tests that are unnecessary.  He also told me if I had a recurrence, I was incurable and would be on aromatase inhibitors.  I take Arimidex everyday.  I am 68, post menopausal and feeling great.  The Arimidex side effects seem to have lessened.  I have been on it for 10 months.

I was originally diagnosed with ductal and said to be small, not requiring chemo or radiation.  Just Arimidex.  But after the lumpectomy, the diagnosis was changed to lobular, 4.5cm with a microscopic drop of the dye in the sentinal node.  Actually there were 2 microscopic bits in one sn and one in another.  The doc at MD said they don't call that positive, but they don't call it negative either.  He said they didn't really know what it means.  So, being on the border for needing chemo due to the size, I opted to take chemo.  I wasn't too well informed at that time and didn't know that the chemo really doesn't do much for lobular bc.  Oh well, I felt like I was doing something.  I was, poisoning my body.LOL 

My mom died from ovarian cancer.  She lived 7 years past her diagnosis.  Pretty amazing.  Many of those were good quality.  The CA-125 is quite accurate to diagnose ovarian cancer.  My understanding is there isn't such a marker for breast cancer,  If someone knows of a good one let me know.  I will certainly ask for it.

I lost a 37 y/o niece to breast cancer in Jan.  She was diagnosed at age 32.  She had 3 young children.  She fought it with any and every clinical trial MD Anderson had to offer her.  She wanted to live until her children were older.  She saw one graduate from High School and one a senior and  the other one a sophmore.  Bless her heart.

I see the onc every 6 months.  He doesn't draw blood.  I do see my Internist every 3 months for blood work because I am on a statin.  She checks all my things that need to be checked for bc, so I feel good about that.

I am going through reconstruction, but it is not that great.  My breasts were D and now the implants don't have very good projection.  One is better than the other.  I have Mentor "gummy bears".  He also got one nipple to far toward my armpit.  The other is in a good place, but that is the implant that looks much smaller than the other.  I am scheduled for a revision in Sept.  He is going to change out the "flat" implant for a larger one.  They just don't look like real breasts to me.  I am resigned to the fact that man cannot make what God makes.  I was not a candidate for a tramflap and I just didn't want to go through a long operation for a latismus flap or a DIEP.  So I opted for expanders followed by implants. I am thinking maybe I have too much skin left from the mastecomies and that allows the implants to "ooze" out and flatten out.  They aren't very pretty.  But, I am glad to be alive and I am really feeling good these days.  So, Hallelujah and Praise the Lord.

Well, I think I covered everything, even though I think I jumped around  a lot.. 

I am glad to find this thread and will keep in touch.  I loved reading posts from the longtime survivors.  That is always encouraging.

Hugs to all, Sammie Kay

"Every journey has its end, but in the end it is the journey that counts." Unknown Dx 10/5/2006, ILC, 4cm, Stage IIB, 3/17 nodes, ER+/PR+, HER2-
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Jun 25, 2008 09:09PM SammieKay wrote:

P.S.  The pig avatars are a sign of solidarity for one of our girls on Feb.ChemoCruisers who has had a recurrence.  Cute aren't they?  Check out "Anyone starting chemo in Feb?"  You will see a bunch of "flying pigs".  : )  Sammie Kay

"Every journey has its end, but in the end it is the journey that counts." Unknown Dx 10/5/2006, ILC, 4cm, Stage IIB, 3/17 nodes, ER+/PR+, HER2-
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Jun 26, 2008 09:37AM GayleB wrote:

SammieKay, thanks for the info.  I, too, am on a statin, along with zetia and colestid to control cholesterol.  That is why I have the labwork every 4 months and want to consolidate these tests.  I am sorry about your difficulties with the recon.  But, I do hope they can get things right soon.  I didn't do the chemo, and I didn't know it wouldn't help much with lobular, which is what I had.  I just believed that the risks far outweighed the benefits.  The Armidex is all for now.  Love the flying pigs--really cute.  Take care and stay in touch. 

Dx 1/8/2008, ILC, 1cm, Stage II, Grade 1, 1/6 nodes, ER+/PR+, HER2-
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Jun 26, 2008 10:00AM HensonChi wrote:

I was under the impression from the studies that MD Anderson in Texas did that it was primary chemotherapy that did not help with Lobular.  Here is one of the links to that study.  http://www.news-medical.net/?id=7087.

jco.ascopubs.org/cgi/content/a... 

 I assume that Primary chemo means before surgery, but I don't know if I am correct.  I think that chemo after surgery is more effective.  Anyway these are good articles.  Clarify for me if I am incorrect.

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Jun 26, 2008 06:21PM GayleB wrote:

Too much testing does make us nervous.  Besides that, I don't see the point in my insurance co. paying for duplications and for me to have to make a co-pay for duplicate testing.  So, it makes sense to me to have my GP do everything at one time.  All I am taking is the Arimidex, no chemo, radiation, etc.  And, if the onc will just be diligent in the physical exams (which I believe he will be) and the BCS continues his exams, I will be a happy camper. 

Dx 1/8/2008, ILC, 1cm, Stage II, Grade 1, 1/6 nodes, ER+/PR+, HER2-
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Jun 27, 2008 12:38AM Gitane wrote:

HensonChi,  I thought that the benefit of chemo was the same whether given before or after surgery.  I also thought that according to some studies lobular cancer in general doesn't respond as well as ductal to chemo, regardless of when it is given, before or after.  That being said, I had pleomorphic lobular which responded well to chemo (AC) given before surgery.  I think classic lobular may different.

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Jun 27, 2008 10:39AM nash wrote:

I think the issue with ILC responding to chemo comes down to the fact that many ILC tumors are grade 1, which isn't going to respond well to chemo, whether it's ILC or IDC. More aggressive grade 2 or 3 (which tend to be pleomorphic, like Gitane and I have) will respond better to the chemo, as would a grade 2 or 3 IDC. 

ILC is hard to grade, in general, and some pathologists don't even like to grade it at all, b/c they feel the Scarff-Bloom-Richardson scale used for bc in general doesn't fit ILC well (I think it has something to do with the tubular score). Anyhow, I've been told my pleomorphic ILC is really more like a grade 3 IDC, even though it was graded a 2 as ILC.

At any rate, I believe classic ILC is almost always a grade 1, thus the limited response to chemo in the neoadjuvant trials done at MD Anderson. 

Stage IV Pleomorphic ILC, initially diagnosed at age 38 Dx 6/7/2007, ILC, Left, 2cm, Stage IV, metastasized to bone, Grade 2, 0/4 nodes, ER+/PR+, HER2- (FISH) Surgery 7/19/2007 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 8/1/2007 CAF Radiation Therapy 12/27/2007 Whole-breast: Breast, Chest wall Hormonal Therapy 3/1/2008 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 4/24/2015, ILC, Left, 1cm, Stage IV, metastasized to other, Grade 2, 0/10 nodes, ER+/PR+ Surgery 5/15/2015 Mastectomy; Reconstruction (left): Latissimus dorsi flap Dx 2/1/2018, ILC, Right, 6cm+, Stage IV, metastasized to other, Grade 3, ER+/PR+ Chemotherapy 2/15/2018 Cytoxan (cyclophosphamide), Taxol (paclitaxel), Taxotere (docetaxel) Dx 6/20/2018, ILC, Both breasts, 6cm+, Stage IV, metastasized to brain/bone, Grade 3, ER+/PR+ Targeted Therapy 7/1/2018 Ibrance (palbociclib) Dx 7/17/2020, ILC, Both breasts, 6cm+, Stage IV, metastasized to brain/bone, Grade 2, ER+/PR+, HER2- (FISH) Chemotherapy 7/17/2020 Xeloda (capecitabine) Radiation Therapy 7/23/2020 Hormonal Therapy Faslodex (fulvestrant), Zoladex (goserelin) Radiation Therapy External: Brain
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Jun 27, 2008 02:48PM nash wrote:

Wow! That's really interesting, Sherri! Totally blows my grade/chemo theory out of the water, doesn't it? Also makes me feel better about getting chemo myself.

The oncs must sit around pulling their hair out in frustration--nothing about this disease seems to fit any sort of mold.  

Stage IV Pleomorphic ILC, initially diagnosed at age 38 Dx 6/7/2007, ILC, Left, 2cm, Stage IV, metastasized to bone, Grade 2, 0/4 nodes, ER+/PR+, HER2- (FISH) Surgery 7/19/2007 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 8/1/2007 CAF Radiation Therapy 12/27/2007 Whole-breast: Breast, Chest wall Hormonal Therapy 3/1/2008 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 4/24/2015, ILC, Left, 1cm, Stage IV, metastasized to other, Grade 2, 0/10 nodes, ER+/PR+ Surgery 5/15/2015 Mastectomy; Reconstruction (left): Latissimus dorsi flap Dx 2/1/2018, ILC, Right, 6cm+, Stage IV, metastasized to other, Grade 3, ER+/PR+ Chemotherapy 2/15/2018 Cytoxan (cyclophosphamide), Taxol (paclitaxel), Taxotere (docetaxel) Dx 6/20/2018, ILC, Both breasts, 6cm+, Stage IV, metastasized to brain/bone, Grade 3, ER+/PR+ Targeted Therapy 7/1/2018 Ibrance (palbociclib) Dx 7/17/2020, ILC, Both breasts, 6cm+, Stage IV, metastasized to brain/bone, Grade 2, ER+/PR+, HER2- (FISH) Chemotherapy 7/17/2020 Xeloda (capecitabine) Radiation Therapy 7/23/2020 Hormonal Therapy Faslodex (fulvestrant), Zoladex (goserelin) Radiation Therapy External: Brain
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Jun 27, 2008 03:11PM HensonChi wrote:

I really don't know what to think about chemo and ILC....I just had read above that someone said that chemo isn't effective for ILC and I am praying that it is.  I am doing the chemo and hoping that it will work.  I was a little discouraged with the discussion when it said that it won't work with ILC and I really need to believe it is going to work for me!  That is the only reason I posted the 2 studies from M.D. Anderson.  Hope everyone is doing well...have a great weekend!

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Jun 27, 2008 07:58PM Rovergirl wrote:

I have ILC, am a triple negative (which is almost unheard of) plus I have pleomorphic variant and according to my oncol. not having chemo wasn't even an option.  I saw 2 oncol. and they both said I needed chemo right away.  So I'm getting 27 weeks of chemo, then surgery with radiation as a follow up.  Even with my particular circumstances my oncol. says I can expect a good outcome and he says it's curable.  I am also participating in a clincial trial through the Seattle Cancer Care Alliance for an investigational drug which is targeting locally advanced cancers.

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Jul 30, 2008 10:54AM HensonChi wrote:

bump

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Aug 1, 2008 08:00PM Gitane wrote:

The first oncologist who gave an opinion said I "may" need chemo because of the amount of tumor in my breast, that hormonal therapy would be the most helpful for me. The second oncologist I spoke to said that I should not count on Femara alone because I'm progesterone negative and that with pleomorphic lobular I could expect a good response to chemo because, "those cells are affected".  As it turns out he was right.

 In addition, the chemo sensitivity test that was done on my tumor showed that Adriamycin/Cytox.  was the only chemo my tumor would respond to.  Makes me very worried about all the women who are choosing TC for chemo thinking it works just as well, or that Adriamycin won't work for them because they're Her2 negative.    I have also read that only Her2 positive cells respond to adriamycin, while mine was Her2 negative and responded extremely well.  

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Aug 1, 2008 08:50PM wishiwere wrote:

WoW~ How can any of us or the docs make informed decisions when there are so many variants to every tx and ever dx?  So daunting...

wishiwere~ Path read stage 1C- 1st Primary was IDC w/DCIS 1.4 cm, ER/PR+ & HER2- Dx 9/21/2007, ILC, 1cm, Stage IB, Grade 2, 0/4 nodes, ER+/PR+, HER2-

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