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Topic: Dazed & Confused

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

Posted on: Apr 14, 2008 08:41AM

victorious wrote:

Hi All,

I just joined this website and this is my first post.  I have ILC, stage 2, grade 2. Er and Pr +.  I am in the middle of chemo. Taxene and Cytoxan. I have allergic reactions to the taxene every time and eac time they seem to get a little worse.  That is followed by all kinds of lingering side affects, viral rash, yikes!  I was doing quite well emotionally and everything until after this last round. Now I find my self fearful of the chemo and of recurrence.  So, someone told me about this website and how great it was and I checked it out and that does seem to be the case!  Lots of knowledgable and caring women.  I know this is going to change my life for the better somehow - but I don't see that yet. I am 59 and single and my friends have been great, but they just don't quite understand my distress and fears.  When someone says to me "oh your lymph nodes were negative so your going to be just fine" - I just wanna whap em up' side the head !  I'll end here and see what happens and how this all works and proceed from there.  Thanks!!   Victorious (my name is Victoria but that name was taken so I just punched in Victorious - which is what I intend to be!)

Dx 1/21/2008, ILC, 3cm, Stage II, Grade 2, 0/8 nodes, ER+/PR+, HER2-
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Apr 14, 2008 09:03AM wallycat wrote:

I hear your fear of chemo, and I didn't do it Surprised !

Can you have your tumor checked with OncotypeDX scoring.  If you score low, maybe you can quit the chemo.  Tho I am not sure how fast they will be able to return you results (2-3 weeks) and by then you might be done with the chemo.

I had no node involvement and scored 20 so opted out.

Best to you!

Dx 4/07 1 month before turning 50; ILC 1.8cm, ER+/PR+, HER2 neg., Stage 1, Grade 2, 0/5 nodes. Onco score 20, Bilateral Mast., tamoxifen 3-1/2 years, arimidex-completed 4/20/2012
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Apr 14, 2008 09:30AM jpann39 wrote:

Hi Victoria,

Im sorry you have the need to be here but......Welcome to the board, it is a wonderful place to be for support and answers to questions......

Im like Wallycat above......I understand the fear of chemo and I didnt do it either!!!!! She is correct about the OncotypeDX testing, maybe they could do a rush...although we all know how their rush is, NOT!!!!! My score was 12 and I was node negative too so chemo really wasnt recommended but I didnt know that until the last minute so had worked myself into a tizzy over the thought of chemo.........

I will keep you in my thoughts for a better reaction or possibly a release from the rest of your treatments if thats possible.....

Jule

'Gain strength by the positive and don't be sapped by the negative" Dx 11/4/2006, IDC, 2cm, Stage II, Grade 1, 0/9 nodes, ER+/PR+, HER2-
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Apr 14, 2008 01:44PM nash wrote:

On the Oncotype website, it states that the testing should be done before starting chemo. I don't know if that means it CAN"T be done after starting chemo, or if there really isn't a point to testing once chemo has started, since it's a decision tool regarding chemo.

What has your onc said about your reactions to the Taxol? I'm surprised h/she is leaving you on Taxol if the reactions are getting worse. I think a reasonable course of action would be to switch the Taxol to Adriamycin--it'd be worth looking into.

BTW, my oncotype was 18, and I opted for chemo b/c I was 38 at the time, and my tumor was fairly large. 

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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Apr 14, 2008 01:45PM nash wrote:

On the Oncotype website, it states that the testing should be done before starting chemo. I don't know if that means it CAN"T be done after starting chemo, or if there really isn't a point to testing once chemo has started, since it's a decision tool regarding chemo.

What has your onc said about your reactions to the Taxol? I'm surprised h/she is leaving you on Taxol if the reactions are getting worse. I think a reasonable course of action would be to switch the Taxol to Adriamycin--it'd be worth looking into.

BTW, my oncotype was 18, and I opted for chemo b/c I was 38 at the time, and my tumor was fairly large. 

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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Apr 14, 2008 01:46PM nash wrote:

Sorry about the double post--the server is acting up.

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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Apr 15, 2008 06:37AM - edited Apr 15, 2008 06:38AM by LauraGTO

Hi Victoria...HANG IN THERE! This is the worst part of your treatment...but it really will get better! Your prognosis is VERY GOOD. The next chapter is much better...it's just a matter of time and strength...until you truly are victorious. Only those who have gone or are going through this can truly understand what you're dealing with. Those who have not had to deal with their own mortality, can not relate. That's the beauty of this site. That's why I have over 4000 posts...and my recovery - both mentally and physically - is due in large part to reaching out to others who can truely understand. You will have low points, but you will have high ones as well. Perhaps you should look into a local support group as well. Try to look toward the next chapter. Best wishes.

With hope there are possibilities. Dx 7/2005, ILC, 4cm, Stage IIB, Grade 2, 1/11 nodes, ER+/PR+, HER2-
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Apr 21, 2008 12:24AM Gitane wrote:

Victoria,
LauraGTO is right. The women on this board can help. As much as those who love you want to help they don't have the experience to understand what having breast cancer is like. The treatment days for me were like a weird dream in many ways. My emotions and physical states were up and down. The infusion nurses and oncologist were able to help me, answer my questions about the side effects, etc. However, I had to ask questions to get the help I needed. I hope they will listen to you and give you relief from the reactions and side effects you are having. There are many things that might help, but they will know best what they are in your case. You don't have to wait until your next appointment for help. Call them when you need to. Let them know about your fears, too. That's very important.
Gitane

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Apr 21, 2008 11:01AM SLH wrote:

Hi Victoria,

Our friends and family  want to be supportive so they always say things like "You're strong. Just think positive. Be tough and get through chemo, surgery, etc."  But unless you have cancer you don't understand the stress of dealing with all the decision-making, and the nagging fear of reoccurrence.

Have you had surgery yet?  You should tell your onc soon about your side effects from your chemo.  They have an arsenal to choose from, and might be able to find a better fit for you.  Your cancer being ER+ PR+ means that you can use an Aromotase Inhibitor after your chemo ends.  I've had good luck with few side effects on Arimidex (knocking on wood).

sally 

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Apr 21, 2008 11:10AM swimangel72 wrote:

Hi Victoria - I'm glad you found this web site - the women here will definitely help allay your fears! I too feel like wacking people upside their head - but in a loving way because even in their ignorance, our friends and family still worry about us! I love your signature "victorious" because this IS a battle and you sound like a very strong couragious warrior who WILL see victory!

3/3/08 Right-side mastectomy with immediate muscle-sparing free tram; 3/9/08 Developed abdominal MRSA staph infection and hernia;Completed 4 months Navelbine and 1 year Herceptin; Arimidex - 3 more years! Diagnosed at age 53 Dx 2/5/2008, IDC, Right, <1cm, Stage IB, Grade 1, 0/7 nodes, ER+/PR+, HER2+ (FISH)
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Apr 24, 2008 02:30PM carstell wrote:

Hey Victoria,

 I have finished my A/C and am in the midst of Taxol and herceptin. I chose chemo as well. I was 40 at diagnosis, and my tumor was pretty big. Also triple positive, which is a bit odd for ILC. Just get as much info as you can and talk to the ladies on this board. I have found them to be a wealth of info and support!

Cheryl

CAS Dx 11/12/2007, ILC, 4cm, Stage IIA, Grade 2, 0/2 nodes, ER+/PR+, HER2+
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May 3, 2008 05:14PM victorious wrote:

Hello again to all.  Thanks for responding.  I tried to write back for the longest time but kept getting an invalid login attempt.  Well, it turned out that th day I signed up and wrote and created my username must have been a chemo-brain day as I mispelled victorious.  So I kept typing in the correct spelling and therefore getting bumped at login time! 

 Again, I want to thank each of you for writing.  I am 8 days on the other side of chemo #3 with one to go.  I am feeling like absolutel crap.  And I am angry.  About a lot of things.  I have made an appointment with a therapist to try to work some of this stuff out.  I am seeing a male therapist for the first time.  I fear that I will live the rest of my life being kinda pissed off and bitter.  I don't want that but saying things like  "oh gee I'm great.   I'm soooooo glad I got this cancer becuse I am learning so much , my life is going to be so much better". 

I would love to find a local support group but I live and work kinda out in no-man's land.  The isolation is not great either - but it is where I am.  I'll wirte more or elsewhere about who I am and what I do and where I live and all of that.  I do think that a Dragon Boat Team would be fantastic but the closest one to me is about 2 hours away.

Thanks again.

 Victoria

Dx 1/21/2008, ILC, 3cm, Stage II, Grade 2, 0/8 nodes, ER+/PR+, HER2-
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May 3, 2008 05:16PM victorious wrote:

Nash - thnx - can't switch to A because I have a low ejection fraction.  I am taking more steriods and that helps a bit, but T/C is my best cocktail.

Victoria

Dx 1/21/2008, ILC, 3cm, Stage II, Grade 2, 0/8 nodes, ER+/PR+, HER2-
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May 3, 2008 07:27PM nash wrote:

Ah, that makes sense why they're leaving you on the T/C then. I'm sorry you're feeling so crappy. Vent away here--we've all been there, done that. I hope the therapist will be helpful. Keep us posted on your progress--glad you were able to finally log back in.

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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May 4, 2008 11:30AM collector wrote:

I, too, am feeling like I need to get some psych help with this.  I was just diagnonsed and had a lumpectomy but am only one week out from surgery and trying to figure out the chemo choice for me.  One onc is saying 4 rounds of A/C either dose dense or 21 days and the other  onc will give me her opinion on 5/8.  I look at my clanedar and see all my well earned retirment fun time  that used to be filled with guild meetings and stitch groups (I'm an avid needlepointer) and now see one medical apptointment after another.  Friends have been kind and attentive but the only one who understands is one who is now disease free after 8 years of BC.  Luckily I also have a wonderful husband who also understands since he is 3 years disease free from prostate cancer. 

Dx 4/10/2008, ILC, 2cm, Grade 2, 0/2 nodes, ER+/PR+, HER2-
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May 4, 2008 12:05PM VBG wrote:

Hi Victoria and Collector,

I have been diagnosed twice with ILC.  Last Tues I had a bi lat with recon and an ooppherectomy.  I was 46 at my inital dx.  I did not do chemo since my nodes were neg,  I did do rads then tamox.  18 months later they ILC was back.  The rads and Tamox did not stop the new occurence.  My understanding is that rads and chemo are not always successful on low grade tumors, which mine was.  I wish someone had told me that since I would have skipped rads and gone straight for the uni lat at that time.

I will now start AIs, which is why I had the oopherectomy since I was premenopausal.

I have found ILC to be insidious and sneaky.  Clearly standard treatments have not worked for me.  I have the CYP286 test, which evaluates your liver enzymes to see if you are a high or low metabolizer of tamox....I was a high metabolizer, yet it did not work for me!

I am waiting for oncotyping results and a new "tipping" test they are doing at UCSF to see what the risk is that the cancer may have spread beyond the breast.

My advice is to always listen to your inner voice and ask lots of questions.  If you are not getting the answers you need get a second opinion even if it means driving and hour to two to get it.  If I had not pushed my Docs I would have not discovered my recurrence. These boards have been so helpful to me and have helped me ask better questions and to be a more active participant in my treatment.  If I had not gotten a second opinion I would have gotten treatment at my original hospital and would have had a much more aggressive and invasive surgery. I am so happy that I switched to UCSF!

Wishing you all the best,

Valerie

recurrence 12/07 IDC/ILC stage 1 grade 1 6mm; 4/29/08 bilat/recon/ooph chemo starts 6/11/08 Dx 5/21/2006, ILC, 1cm, Stage I, Grade 1, 0/2 nodes, ER+/PR+, HER2-
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May 4, 2008 03:03PM nash wrote:

Welcome, collector. You're at a very overwhelming point in the process--post-op, and deciding on chemo. Once you get a treatment plan in place, I think you'll find that you'll start to feel more in control. The endless doc appointments will eventually wind down, I promise. Keep us posted after your next onc appointment.

Valerie--sorry to hear about your second primary. Sounds like you're getting good care at UCSF. Can you elaborate on the "tipping" test they're doing for recurrence risk? I couldn't find anything on their website or on Google, and I'd be interested in reading more about it. 

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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May 4, 2008 03:09PM collector wrote:

Thanks, Valerie.  I want to do whatever it takes to lower the risk of recurrence but there is a lot of grey area about Invasive lobular and it's hard sorting it all out.  I do plan to call my gynecologist on Monday and talk to him about further screening he would recommend.  Going forward I wish I could find one team of doctors with whom I was completely comfortable who could look at me together and communicate amongst themselves.  In my current state of mental paralysis, I'm not always communicating clearly to the doctors individually.  I know I have to be an advocate for myself and my husband has gone with me to everything so we have an extra pair of ears BUT it still seems like something could fall through the cracks.  I'm sure, too, that the paranoia is just starting! 

Dx 4/10/2008, ILC, 2cm, Grade 2, 0/2 nodes, ER+/PR+, HER2-

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