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Topic: Getting Over The Fear

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

Posted on: Jun 20, 2008 05:21PM

victorious wrote:

Hi All IDC survivors!  I am finally finished with chemo and am started on Femara.  I've only been on the Femara for about a week and in the past two days feel pretty fatigued. Fatigue was actually one of the symptoms of my cancer when I look back on it.  For a couple of years before I was diagnosed I was tired a lot.  After my bilat mast  I think my body was relieved and I felt as if I had more energy (exept of course for the chemo).  So, now I am realizing that I am spending a lot of time fretting about cancer returning.  And I wondered how you all cope with that.  Being ILC is a little more frightening I think.  My onc said it is "sneaky".  And since it could not be seen on a mammogram, does that mean it will not be seen in other places via normal means?  Something I definately have to ask my onc about.  I have heard and read that fear of recurrence is normal, but I would like to do all that I can to beat the fear monster back.  Right now I am about to go make myself a margarita after a long hard days work and I am afriad that I am 'overdoing' it in the booze department.  Then friends send me a ton of information on alternative things and maybe and eat this and drink that and not this and not that.  My oncologist pretty much says "do what you want, eat what you want - make sure you wear sunscreen and just don't drink too much.  If I lived in an urban area I think I would go join up with the dragon boat racers.   But I don't have that out here in the country.  It is 40 miles to the nearest support group! Thanks.

Victorious

Dx 1/21/2008, ILC, 3cm, Stage II, Grade 2, 0/8 nodes, ER+/PR+, HER2-
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Jun 21, 2008 01:34AM SLH wrote:

Hi Victorious,

Congrats on finishing your chemo!  I've been taking Arimidex for 2 1/2 years with some side effects, but they're not too bad.  I don't have a good answer for you about managing bc fear.  I had my bilateral 3 yrs ago, but I can't seem to shake the dread.  I'm hoping that it will ease up as time passes, and the scars become less sensitive.

Take care,

sally 

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Jun 21, 2008 10:12PM Gitane wrote:

Hi Victorious, You are making progress. Getting through treatment, at least the worst of it, not counting the AI we take, is tough. Getting rid of the fear is the hardest part in my opinion. If there is a good way to do it, I haven't found it yet. Lots of things seem to work for me temporarily, but then it sneaks back into my head. I have been doing everything I can to distract myself and find happiness in my daily life and especially in spending time with my husband. I've been doing some cooking, like making home made pasta, baking pizza with my own crust, trying French recipes I've wanted to learn to make. What's working for me lately is learning how to do watercolor painting, starting to lift some weights (light ones, as I'm weak and new to this) and studying about why I worry about things I can't control, like breast cancer. I have been making myself take small steps towards things I have wanted to do but resisted doing or have not had time to do. I come on these boards to read and share. That's about it for me. I have also tried yoga, tai chi, meditation, visualization, walking, and a bunch of other stuff. The list goes on. Anyway, cancer takes up a little less room in my brain than it did 6 months ago, a lot less room than it did a year ago.

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Jun 22, 2008 05:46PM nash wrote:

I think you put your finger on it, Gitane--it's important to do things one enjoys, and that crowds out the fear and thoughts of recurrence. I am especially obsessed with recurrence, as my stage IV bc mom just passed away in February after 5 1/2 years of active treatment. Every day of my life those years was spent dealing with her mets. Plus my dad, father-in-law, grandfather and uncle all died of cancer, so we are constantly in that mode.

So, I've been making an effort to have pleasant diversions--if you're having fun, it's hard to think about cancer. Obviously, one can't be pollyanna about things, but there's sort of a happy medium between thinking about cancer 24/7 and pretending that it never happened.

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 22, 2008 05:49PM nash wrote:

Oh, and victorious--I have a lot of well-meaning people who try to tell me what to eat and do, also. They like to think there's some measure of control over cancer. They don't understand that if I'm going to recur, it's not b/c I ate too much sugar or didn't eat shitake mushrooms. Your onc is right that everything's fine in moderation. A margarita isn't going to hurt anything.

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 25, 2008 06:22PM victorious wrote:

Nash and All, Thanks for replies.  I have just found out that there is a very storon history of BC on my dad's side of the family.  They did not talk about it back then!  (back then was not so long ago) I am going for genetic counsiling.  And then the Femara.  Every day.  You all know the drill.  It just seems like my life is now about bc first and foremost.  That is one reason I am thinking about a breast recon - just to have some sense of "normal".  I guess in time, if there is no recurrance, the fear will fade.  And I do tell myself that even if there is a recurrance, there is something that can be done.  I also think it might be easier if I was not having a 60th birthday, and now with BCF and no breasts and no boyfriend.  Things have GOT to get better!

Victorious

Dx 1/21/2008, ILC, 3cm, Stage II, Grade 2, 0/8 nodes, ER+/PR+, HER2-
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Jun 25, 2008 10:07PM Gitane wrote:

Vitorious,  I'm 60 years old, too.  Getting old is no big deal if we can stay healthy.  Anyway,  I had reconstruction with implants and I'm glad I did.  I had genetic counseling, too. Normal has to be worked at every day, I think, and anything we can do to get closer to it is a good thing.  I had a long period when I had no joy, and being able to feel joy again is really helping me, now.  Like Nash said,  "If you're having fun, it's hard to think about cancer"  YES!

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Jul 3, 2008 01:33AM spar2 wrote:

I had mastectomy in 2004 and reconstruction in 2007, am 56 years old and am so glad I finally had the reconstruction.  Have been on arimidex for 4 years now and am doing good.  I finally live like I want, eat what I want and just feel in my heart things will be ok.  When something knocks me down I always think this too shall pass.

www.spar2.multiply.com Lets help make each other's life better
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Jul 12, 2008 08:09AM victorious wrote:

Gitane,

Did it hurt much and could you tell me why your glad you did it??

Thanks (and off I go to yoga!!).

Victorious

Dx 1/21/2008, ILC, 3cm, Stage II, Grade 2, 0/8 nodes, ER+/PR+, HER2-
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Jul 12, 2008 08:11AM victorious wrote:

Spar2,

Same questions to you as to Gitane.  Did it hurt much and why are you glad you did it?  It is wonderful to read that you live like you want, eat what you want and feel good in your heart.  I'm working on that.

Victorious

Dx 1/21/2008, ILC, 3cm, Stage II, Grade 2, 0/8 nodes, ER+/PR+, HER2-
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Jul 12, 2008 06:53PM Gitane wrote:

Hi victorious,  It's good to hear from you again.  I had expanders put in when I had my mastectomies, so the surgery was not a big deal.  It wasn't painful, at least it didn't seem any different than mastectomy surgery when I compare it to what others say they experienced.  Even the expansions for me were not painful.  My PS gave me meds for pain but I never took them.  Others, however, felt uncomfortable during expansions, so I guess it is different for everyone.  My replacement surgery, I had the expanders replaced with saline implants, wasn't painful either.  I recovered nicely.  I had nipples made from skin grafts from my upper inner thighs after the replacement surgery had healed.  That was not a problem either.  All in all, I would say reconstruction is no big deal, at least it wasn't for me.  My real boobs were sagging by the time I was diagnosed, and these actually look better, although nothing will replace the sensation or the natural feel of the real ones. I'm glad I did it because I have boobs.  I don't know if I would have been happy without boobs, I didn't have a chance to find out, but I probably wouldn't have had a problem living without boobs either.  

Yoga, huh.  I went to a yoga class at our senior center.  I really was amazed, as everyone was able to do exercises with ease and almost everyone was older than I was. (That doesn't happen many places, I love the senior center for that!)  It was a bit too much for me at the time; I wasn't really recovered enough from treatments and surgeries to get the benefit I could get now.  I should try it again.

 Write back soon.  It's great to talk. 

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Jul 12, 2008 07:00PM Gitane wrote:

Spar2,  I love your take on this whole bc experience.  You were diagnosed in '04 and I was diagnosed in '05.  You seem to be so in love with life,  it's great!  I want to get to that place where I can relax, too, and feel that everything will be O.K.  I'm slowly coming out of the "cave" I've put myself in.  It feels good, almost normal at times.  I popped over to "life's a beach" thread.  It's fantastic.  We live near the beach, about a 25 minute drive.  It really takes a lot of the worries away just sitting on that soft sand listening to the waves pound on the shore, the seagulls, and feeling that warm sun.  Yep, I'm gettin' there, slowly but surely.

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Jul 13, 2008 01:23PM donspink wrote:

Hi everyone, there are so many sites here and I keep losing the ones that I have already chatted in. Sorry, I was dx with IPLC grade 3+ 02 June 08. Had mast RB and 3 Sentinel Nodes removed 20 June 08.  I am going back to surgery 1st August 08, to have LB Mast, and Bulk Dissection of Lymph Nodes in the Right arm.  Haven't spoken to the Onco yet, have got Path report, ER pos, PR pos, HER 2 neg.  Anyone out there with similar to me. Spec says I have 2 Indian Files, this means that my CA runs in 2 lines behind each other. Bloody sneaky crap isn't it.  Not that into Indians either!  donspink

Dx 6/2/2008, ILC, 4cm, Stage IIIA, Grade 3, ER+/PR+, HER2-

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