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Topic: Any ILC long term survivors with really large tumor ?

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

Posted on: Jun 9, 2013 01:06PM

macb wrote:

Hi I am looking for reassurance that I can beat this.  I had a diagnosis of ILC on 6/6/12 and a left masectomy 8/9/12 or some date really close to that. I did CMF chemo for 6 months and radiation too. I detested every second of this brutal primitive "treatment". I often feel that I wasted my time and are messed up with my planned reconstruction with Brava and Fat grafting because now the FDA  has closed the trials to new participants. I hate what I look like, I am horribly lopsided and don't even take showers as often as I used to because I don't want to look at myself. My cancer was huge. 11.5cm by 9cm and 5 out of 19 nodes positive. I look on these boards but never see a long term survivor who had a cancer as large as mine. I would like to know that this horrible treatment wasn't just an awful painful waste of time.I had mammograms when I was 40, 41,42,43,44,45,and missed 46 because I broke my foot and was on crutches for three months. Some helpful young one pointed out to me after my mammogram that if I had had a 3-D mammogram my cancer would have been found when it was small. Thanks that was a big help to know that, after my masectomy had already happened.  I'd like to know that I wasn't disfigured and mutilated and poisoned and fried for no reason. Yes my attutide sucks, well nothing seems to ever go right for me so I come by my bad attitude as a natural consequence of my life experiences.  I had a counselor but have had to drop her because I can't afford to pay her and my insurance doesn't cover counseling. I also had to drop my gym because we can't afford that either. I could go on but you can get the idea of how things are going for me, so please just tell me survivor stories of women who had enormous tumors like mine.

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Jun 9, 2013 02:19PM overjoyed4life wrote:

Hello macb,

My tumor may not have been as large as yours (5cm) but I was Dx. 6/5/2010 with 22/29 nodes positive. To be honest with you, I didn't think I would be here today. I do understand your frustration. Over the last three years I have seen a lot of things happen in my life, good and bad. Please try to be more positive. Depression and stress can wreak havoc on your body. I opted out of reconstruction and decided to go with the prosthesis. I always look at life as a glass half full instead of half empty. As horrible as what we have gone through, there is always someone who has gone through something far worse. We are here, alive and breathing. What more can we ask for. Check out the Living Without Reconstruction After a Mastectomy forum. It may help with the way you are feeling about your body. 

Feel Better Soon

Love and Blessings

Sharon

Sharon Dx 6/5/2010, ILC, 5cm, Stage IIIC, Grade 1, 22/29 nodes, ER+/PR+, HER2- Chemotherapy 6/19/2010 Abraxane (albumin-bound or nab-paclitaxel), Adriamycin (doxorubicin), Cytoxan (cyclophosphamide) Surgery 1/10/2011 Lymph node removal: Right, Sentinel, Underarm/Axillary; Mastectomy: Right Radiation Therapy 1/31/2011 Hormonal Therapy 3/31/2011 Arimidex (anastrozole) Hormonal Therapy 7/30/2012 Aromasin (exemestane) Dx 6/30/2017, Stage IV, metastasized to bone
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Jun 9, 2013 02:50PM - edited Jun 9, 2013 02:51PM by jenni__ca

mine was measured as 5x7x12 cm at lumpectomy and i had no clear margins in any direction ... path report from follow up mast said something like 7 cm ... clear mammo right before lumpectomy ... even though i have only one breast i don't feel disfigured as much as i just feel like this is the new me and i'm still here and still enjoying life very much .. i hope you find your emotional center of balance but it does take time ...

ILC, multifocal, 7+++cm, ER+, PR-, HER2-, 1/4 nodes, stage 3A ...16 years !!!!!! and counting....
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Jun 9, 2013 04:48PM ck55 wrote:

Hi macb. I was diagnosed in Nov 2006 with a 9 CM tumor a 2+ nodes. Still here!

I had DIEP reconstruction on Oct 2009 and am very happy with it. Is DIEP not an option for you?

Cyndi

DX 11/9/06 9cm ILC Stage 3A Mastectomy ER+ PR+ HR- 2/16 Nodes DD AC/Taxol Radiation
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Jun 22, 2013 09:28AM YATCOMW wrote:

I can certainly understand your frustation......

My tumor was 8 cm by 6 cm and was never seen on a mammogram or sonogram.  I had 17 nodes positive.

but I just passed my 9 year mark.....

There are other hopeful stories out there..... I clung onto them in the beginning to get thru it.

Have hope.....with hope all things are possible.



Jacqueline

Dx 5/2004, ILC/IDC, 6cm+, Stage IIIC, Grade 3, 17/24 nodes, ER+/PR+, HER2-
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Jun 25, 2013 11:24PM nowords wrote:

My tumor was 10 cm plus...ILC. Had 7 of 22 nodes with extra nodal extension. Diagnosed April of 2009....4 rounds of dose dense AC and 30 rad treatments, tamoxifen for 4 years , one more to go....have MRI annually...all good so far.

DIEP recon 2011.



I had mam. annually for 10 years ; showed nothing....

Dx 4/6/2009, ILC, 6cm+, Stage IIIA, Grade 1, 7/22 nodes, ER+/PR+, HER2-
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Jul 28, 2013 01:07AM lauri wrote:

Still here after 7+ years with 11/12 nodes and 11 cm tumor.  No reconstruction, but I did finally get a prosthesis at age 66 in honor of my new post-BC marriage. 

From the ashes of disaster grow the roses of success Dx 3/8/2006, ILC, 6cm+, Stage IIIB, Grade 2, 11/12 nodes, ER+/PR+, HER2- Radiation Therapy Whole-breast: Breast Surgery Mastectomy: Left Chemotherapy AC + T (Taxol) Hormonal Therapy Arimidex (anastrozole)
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Jul 28, 2013 04:14AM Momine wrote:

They never could decide how big my tumor was, but it was more than 5cm. Because I had chemo before surgery (as well as after), we never got a clear answer on the size. I also had 7 positive nodes.

Yes, the treatment is primitive, barbaric and brutal. But I choose to laugh. It sucks rocks, we completely agree, but I try to take it as an interesting experiment of some kind and if I can't find the humor in the situation, I watch Fawlty Towers.

I had the entire rack razed at my insistence and I have not had any recon, nor do I think I will. I wear small, light fakes most days. For some strange reason, it really doesn't bother me. The stretchmarks on my belly bother me far more. I am weird that way.

The reason I am telling you all this is to try to show you that it IS possible to get to the other side and enjoy it.

We are all going to die, that one is a given. The only variable is "when," and since we have no way of knowing that, it really doesn't pay to get too hung up on it.

Dx 6/1/2011, ILC, 5cm, Stage IIIB, Grade 2, 7/23 nodes, ER+/PR+, HER2- Chemotherapy 6/20/2011 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel) Surgery 9/13/2011 Mastectomy: Left, Right Radiation Therapy 1/9/2012 Surgery 3/8/2012 Prophylactic ovary removal Hormonal Therapy 4/1/2012 Femara (letrozole)
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Jul 28, 2013 09:53AM sgreenarch wrote:

First want to thank all of the long term survivors who took the time to respond. You can't imagine how important your words are. I read them a few times just to let the message sink in. Thank you.

Macb, I didn't have one big tumor. Had a med sized one and another smaller one. Had to have a unimx. I'm writing to respond to your lopsided comment.

Wow, do I know how you feel! Very hard, and i havent done recon yet. If i did it at all i would also choose BRAVA but i wanted to give the procedure more time as it is very new.

At some point this past year I flipped a switch in my head and just grew to accept myself. I wear a prosthesis at work or in public as I am very lopsided without but not at home or when I swim. I think I began to accept that I might survive this disease and that helped me to stop being so angry and miserable (which may be fear masquerading as other emotions.) I have been so much calmer and happier since. Sounds very weird but seeing people with amputations or other disfigurements made me realize that many people have something to contend with. Though not a late stage, I was still so worried at dx that I wouldn't live to see my kids grow up. Well, maybe I just will, and that even trumps the loss of a breast and etc. Macb, I think it's not a bad idea to even think about antidepressants or anti anxiety meds if they'd help you. Makes sense to have your feelings. You've been thru a lot!

Dx 7/20/2010, ILC, 2cm, Stage IB, 0/3 nodes, ER+/PR+, HER2-
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Aug 1, 2013 09:07PM TinaHoff wrote:

Dear macb,

I'm so glad you asked this question.  I was diagnosed Feb 8 2013, and my surgery was March 28, 2013.  The final pathology report noted that my tumor was a whopping 12cm x 11.5cm x 4.5cm. My husband dubbed it "the Mother Ship" the day it came out.

I, too, felt alone in the size of my tumor, terrified about what it meant.

I'm extremely grateful to Sharon, Jenni, and all of the long term responders who have had similarly sized tumors, and are still here, vital and alive, kicking butt, and proving to me that this whole journey is worth it, that I will survive, that breast cancer does NOT define me.

Before my surgery, I grieved over my soon to be lost breast. When I started A/C, I grieved over my lost hair.  Now, after a three week break from A/C, and four infusions into my 12 infusion taxol schedule, I sort of get a kick out of my near baldness, and my mastectomy scar doesn't scare me the way I thought it would before my surgery.  I actually forget sometimes that I have only one breast, and when I do remember, it bothers me less than I thought it would.  The anticipation of the unknown was WAY worse than the reality has turned out to me.  A lot of survivors on these boards told this newbie all of that, and I am delighted to say that they were so right.

macb, you are absolutely right to be pissed off, frustrated, or scared.  Talk about it with people you trust, maybe you have a friend who went through a similar hell, and knows how you feel.  You don't need me to tell you this, but I'll say it anyway -whatever you feel at any given moment is OK, you don't need to apologize to anyone for it, or "get over it" on anyone's time schedule.  But I promise you, you will get through this, you will amaze yourself with how powerful you really are, and how much support you really have, here on these discussion boards, and out in the world.  I sometimes forget that, and am constantly amazed by people's responses when I honestly share with them what I'm dealing with.

sgreenarch mentioned that antianxiety or antidepressants might be worth looking into.  I'll tell you, I have taken antianxiety drugs off and on through my situation, and for me it turned out to be a fabulous idea.  I don't have to take them every day, but they got me through some really rough days.  Not only was I dealing with the breast cancer diagnosis this past year, but we had a tragedy in my immediate family the previous fall.  The last two years have been really rough.  At times they seriously sucked.  I can identify with your feeling that the crap truck unfairly dumped a double load on your doorstep.  I also sense from what you write that you have the sheer guts and determination to overcome said crap.

We're all in awe of all you have overcome already, and hope and pray you find joy again very soon.  You deserve joy.

Tina

www.boobsofsteel.com Dx 2/8/2013, ILC, 6cm+, Stage IIIA, Grade 2, ER+/PR+, HER2- Surgery 3/28/2013 Mastectomy: Right Chemotherapy 5/1/2013 AC Chemotherapy 7/11/2013 Taxol (paclitaxel) Surgery 5/27/2014 Reconstruction (right): DIEP flap Radiation Therapy
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Aug 1, 2013 09:19PM TinaHoff wrote:

Dear ck55,

How long was your recovery for DIEP flap recon?  I finish with radiation approx. mid November, and I meet with the plastic surgeon at UW in January to talk about the scheduling.  I'm frightened by the 3-5 day hospital stay.  Yikes!

Tina

www.boobsofsteel.com Dx 2/8/2013, ILC, 6cm+, Stage IIIA, Grade 2, ER+/PR+, HER2- Surgery 3/28/2013 Mastectomy: Right Chemotherapy 5/1/2013 AC Chemotherapy 7/11/2013 Taxol (paclitaxel) Surgery 5/27/2014 Reconstruction (right): DIEP flap Radiation Therapy
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Aug 2, 2013 05:18PM ck55 wrote:

Hi Tina,

    So excited for you to be starting this process! I really didn't think the recovery process was all that bad. I was bent over for about a week, but I didn't have that much pain (of course the painkillers helped with that. Good to stay on schedule with those pills) I would say I was back to normal within 3 weeks.

    I am just so very happy that I did it. Before the surgery I really didn't think that being mono boobed really bothered me, but now it is so nice to be able to wear what ever I want without worrying about what will show when I bend over. It has really improved my QOL.

    Good luck with everything. Which ps are you using at the UWMC? I worked in the lab there for 20 years, so I have a bit of a fondness for the place.

     Cyndi

DX 11/9/06 9cm ILC Stage 3A Mastectomy ER+ PR+ HR- 2/16 Nodes DD AC/Taxol Radiation
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Aug 2, 2013 10:31PM - edited Aug 2, 2013 10:32PM by TinaHoff

Hi Cyndi,

I'm seeing Dr. Neligan for the recon.

Thank you for sharing your experience post-recon, and I hear you on keeping on schedule with the pain meds.  I learned the hard way during the recovery from the mastectomy.  I have a really bad habit of NOT taking them, thinking the pain is not "bad enough" to warrant the prescription pain meds.  Oh, boy, was that dumb!  Such searing pain I have never experienced!  After that, I learned to take the advice of the nurses very seriously when they told me you have to keep ahead of the pain, always.  I was warned again to keep ahead of my nausea when I started A/C, and they did not have to tell me twice!

I, too, do not worry as much as I thought I would about having one less breast.  But it does limit my wardrobe choices for sure, as you have noted.  I have even contemplated going without the reconstruction, I was so frightened about the surgery and recovery.  It's funny, when I started this journey, I couldn't wait to get to the reconstruction.  Then I had my first proper meeting with the ps in March before the mastectomy.  That's when I learned that the DIEP flap surgery lasted 8-10 hours, where the mastectomy surgery would be 2-3 hours.  Looking back on it now, as frightened as I was about the mastectomy surgery, it seems like the easiest part of the process.  Wow.  Never thought I'd feel that way about losing a boob.

Thanks again for responding.  Whew, you've made me feel a LOT more hopeful about my decision regarding the DIEP flap recon.  And actually about everything else I've worried about on this journey.  I just noticed you're about 7 years out from your dx, and my dx was very similar to yours (my tumor was 11.5cm, with 2/29 nodes, also a Stage 3A). I'm so grateful and happy to have met you on this forum.

Tina

www.boobsofsteel.com Dx 2/8/2013, ILC, 6cm+, Stage IIIA, Grade 2, ER+/PR+, HER2- Surgery 3/28/2013 Mastectomy: Right Chemotherapy 5/1/2013 AC Chemotherapy 7/11/2013 Taxol (paclitaxel) Surgery 5/27/2014 Reconstruction (right): DIEP flap Radiation Therapy
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Nov 6, 2013 01:50AM macb wrote:

Thank you to you all for so much support and love. I wish I could be a more serene person, but I am still so much on the rollercoaster. I just started with a new oncologist. She is great, really warm and knowledgable. She however scared me badly bringing up doing screening tests like a bonescan and mammogram and tumor markers  . I am really afraid of looking for reoccurences as I don't know if I could cope with more god awful slash and burn oncology treatment. Are there any reoccurence treatments that are not as bad as the chemo/radiation/surgery we have already gone through? I just don't want to loose myself any more than I already have scrambling after life. I have young girls, 9 and almost 11 years old. They have seen way too much of this miserable situation. I try my best for them, take them to school every day, to activities and do crafts, walk with them. I try to make all my time with them count, just in case. I am trying to teach them to cook. I just feel so trapped by my circumstances. I am broke and lost a temp to permanent job I had just started when I was diagnosed. My husband has really bad lungs from asbestos exposure at work in construction and he has to keep working so that I have insurance, even though he is often short of breath. I just feel really bad about that. I know my fears are a realistic appraisal of my difficult situation. I take L-Tryptophan from my former Naturopaths recommendation to help with myood and sleep. I just don't feel comfortable taking any other antidepressants/antanxiety meds as I worry so much about more side effects causing problems.

 I am doing Brava for reconstructiom, just got into the trial before it closed, at a plastic surgeon at the Polyclinic. I had a huge cellulitis after my tissue expander was removed at the end of Sept. They took 300cc's of pus off my chest,breast area and I had to have another surgery to clean up the rest of the infection. I am back to wearing the Brava domes 12 hours per day for the past 3 weeks and am scheduled for a fat grafting session  November 26. I am nervous because I can't get my breast crater/scar to come away from my chest wall. I have soooo much invested in trying to have this Brava method of recon to work well. I worry as I only have a finite amount of fat to harvest, not that I am skinny or anthing.

Whew sorry for my run on post. I had to get all this off my chest, so to speak.

Thanks.



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Nov 6, 2013 03:13PM Momine wrote:

Macb, Never, ever apologize here for not being all unicorns and rainbow farts. Cancer sucks, we all agree ;).

As far as follow-up, I would rather know than not know. Some recurrences can be dealt with relatively "easily," but only if you know they are there.

I understand that your circumstances are not the greatest perhaps, but most people have some not so great stuff as part of their daily existence. Try to enjoy the enjoyable bits, because it really helps you get through the less enjoyable bits.

Dx 6/1/2011, ILC, 5cm, Stage IIIB, Grade 2, 7/23 nodes, ER+/PR+, HER2- Chemotherapy 6/20/2011 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel) Surgery 9/13/2011 Mastectomy: Left, Right Radiation Therapy 1/9/2012 Surgery 3/8/2012 Prophylactic ovary removal Hormonal Therapy 4/1/2012 Femara (letrozole)
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Nov 7, 2013 09:49PM flutterbye wrote:

Hi Macb...

You have no idea how much your post has helped me. My doctor found a small lump in my right breast in 2009. I didn't have health insurance but my PCP hooked me up with a grant and I was able to have a mammogram and needle biopsy. BENIGN! Because I still didn't have health insurance I didn't follow up with the breast doctor until it grew in the later part of 2011. I was able to get hooked up with the grant again and in June 2012 I had another mammogram, sonogram and needle biopsy. Good news again...BENIGN! After working Per Diem for 4 1/2 years I finally was a full hire in the early part of this year and started having doctor appointments that I was unable to have for the last 10 years due to no insurance. In August I followed up with my breast doctor and he did a tissue biopsy right then and there. It wasn't scheduled but I was certainly willing. However, just having the tissue biopsy made me feel violated. I was so surprised that I felt this way because I am a pretty tough cookie.

I think that part of my feelings had to do with the fact that it hurt...our breast are sensitive...and the fact that the two favorite things that I have always liked about myself were my hair and my boobs. Well on August 26, 2013 I found out that I had breast cancer and that it was a Grade 2 and Infiltrating. That started the whirlwind that is still spinning. First I had a breast MRI, then Genetic Counseling and Testing. The MRI indicated 2 lesions on my sternum so they scheduled a full body bone scan because they thought I had Bone Cancer! That felt like a long wait! I felt like the happiest woman alive to only have breast cancer when the scan was negative.

I do understand your life struggles because I have gone through many of my own...probably very similar to yours and others. I feel like I have been fighting my whole life to be honest. Too long a story for everything but I will tell you this. I have Hep C and I have had it for the majority of my life. I got it from a Dentist back when they hadn't even labeled Hep C. Because of the Hep C I decided on a double mastectomy because I didn't know if I would have the energy to fight this one time never mind if it came back in the other breast. So, after the mastectomy I learned that my tumor was over 8cm, the cancer was lobular, the 7 nodes that they took out were all positive. Then the good news (me being sarcastic) I have to have more surgery, they have to take out more nodes, the skin off my lower right breast and they have to take the tissue expander out (I started reconstruction when they removed my two breast) and they have to take skin from somewhere and put it on my breast. Oh ya....there was mention of possibly taking some muscle.

I have met with the oncologist and have started hormones, will need chemo and radiation. I will lose my hair! I love my hair. I will be the ugliest bald woman in the world but you know what...I don't care, I will be happy to find out that I can have chemo. Right now I don't know if I can because of the Hep C. I have to meet with that doctor so they can check my viral load.

I probably could go on and on...but let me tell you why your post helped me! Because you voiced so much of what I have felt or still feel. I am not afraid of dying but I am afraid that if I let go of what is inside of me then I will start screaming and never stop. That I will end up in the loony bin. Even my friends have gone by the wayside over the years because they are afraid that my bad luck is contagious. LOL...I know they are not true friends but that doesn't stop it from hurting. I don't tell people that I have Hep C because so many are ignorant and treat me like I have leprosy. My future right now is very uncertain, with my job, with my health, with pretty much everything. Mostly I am still in shock...I still haven't cried but I will eventually (I think) and I will continue the fight...If something came easy to me I probably wouldn't know what to do!

But macb let me tell you that you are strong and you can beat this. If it is beatable then you will beat it because you are strong and you will figure out a way. You have already gone so far in your journey! I admire you for all that you have gone through.

Dx 8/26/2013, ILC, 6cm+, Stage IIIA, Grade 2, 7/7 nodes, ER+/PR+, HER2- Surgery 10/14/2013 Lymph node removal: Right; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Hormonal Therapy 11/4/2013 Arimidex (anastrozole) Surgery 11/13/2013 Lymph node removal: Right, Underarm/Axillary; Reconstruction (right)
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Nov 8, 2013 07:23PM Rdrunner wrote:

"I am not afraid of dying but I am afraid that if I let go of what is inside of me then I will start screaming and never stop." Thank you for articulating that.. bingo!!!


Dx 10/23/2012, ILC, 6cm+, Stage IIB, Grade 2, 0/4 nodes, ER+/PR+ Dx 11/23/2012, DCIS, <1cm, Stage II, Grade 2, 0/4 nodes, ER+/PR+ Dx 11/23/2012, ILC, <1cm, Stage IIB, Grade 2, 0/4 nodes, ER+/PR+ Dx 11/23/2012, IDC, <1cm, Stage IIB, Grade 1, 0/4 nodes, ER+/PR+ Surgery 11/23/2012 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left Chemotherapy 2/6/2013 AC + T (Taxol) Hormonal Therapy 5/1/2013 Surgery 9/12/2013 Prophylactic mastectomy: Right
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Nov 13, 2013 03:55PM lisa137 wrote:

Oh my, several things articulated here that really hit home for me. Feeling violated by the biopsies....actually I was completely traumatized by the biopsies, even to the point that now just walking into that hospital or into my surgeon's office (where the two different biopsies were done) increases my heart rate, gives me shaky hands, and a general feeling of doom.

And me too...I'm not afraid of dying, not really, but I am afraid of being afraid when I die, if that makes any sense.

I went through some bad bad days, and I don't doubt that I'll have more bad days, but for now, I'm in a good...no, a great...place.

After my biopsies when I started having panic attacks, and even when I wasn't freaking out I was generally miserable--and I know I drove my poor husband nuts what with being so easily upset, so weepy, so prone to being irritable and snapping at him, which I never do---my surgeon realized what was happening and gave me Ativan for the time leading up to, and directly after, my double mastectomy. I found that I didn't need anywhere near the high dose he gave me; that I could cut them in half, take half of one in the day time and stay on a fairly even keel---not happy, you understand, but able to deal with the situation without turning into a complete basket case.

I also found that I could take half of one near bedtime and really SLEEP....sleep deeply, and restfully, and dreamlessly, and I do believe that that might have saved my sanity. Sleep is important.

Afterwards, as I was recovering from the surgery (and mind you, I'm only 4 weeks out from that) I stopped the Ativan, but soon found that anxiety was taking over my life again. I truly could not sleep for more than 2 hours at a time, and the moment I'd wake up I was aware of having had surgery--being Myrtle Turtle (lol) stuck on my back, uncomfortable, scared, depressed. Once I stopped taking the pain meds from the surgery, the anxiety came back full force; panic attacks out of nowhere, and constant, constant, hopeless depression, and I tried at all times to hold it in as much as possible, because I was afraid---I knew--that if I let any of it out, it would ALL come out, uncontrollably.... I had actually become extremely anxious about being anxious. Sounds silly, but there it was. It wasn't even about the cancer anymore, but about not being able to get a handle on my own thoughts and feelings.

My PCP then put me on Klonopin. Just half a milligram, twice a day, IF needed.

Now let me take a moment to say that I'm a person who has always avoided any drugs unless absolutely necessary. I take naps and showers to try and combat headaches before I ever even consider an ibuprofen or tylenol, so I obviously was in a REALLY bad place to agree that these anti-anxiety drugs were something I wanted/needed to be taking. I read about side effects, I read about possibility of dependence, and I came to the conclusion that what I needed to worry about now, was NOW----healing, fighting this cancer, getting through treatment, and learning to accept that this could, and indeed HAD happened to me. TO ME. I needed to be able to function.

The first day after I started on the Klonopin I finally just cried. And I cried all day long. And I told my husband to LET me cry, because now, finally, I could cry and NOT have it turn into an uncontrollable crying jag, I could cry and not have it just spiral out of control. I finally let my mind really start to wrap itself around what was happening. I cried for the loss of my breasts (which I honestly never liked much anyway, lol.) I cried because my life had been so happy and so perfect right up until the moment of that first biopsy and I cried because I was afraid life would never be that happy again. I cried because of all the fear and upset this was causing my beloved husband, mother, and younger brother. I even cried over a couple of sappy commercials. And managed to laugh at myself for doing so. :)

It felt like my soul had taken a long, much-needed shower. My husband checked his watch and gave me a hug every hour (lol) and told me he loved me and held me some and left me alone some, and he let me cry, and never once told me to not cry. Bless him, he "got it." He understood.

Late that night the tears had stopped and I made some snarky but funny comment about something someone on TV said and my husband said "THERE you are! You're back, and God, I've missed you so much!" And he meant it, and he was right. I was back. I had ME again.

That was two weeks ago. I have moments of fear, but they are rational. I have lots of good moments ---hours even--when I don't even really think about cancer. I send my husband "Achievement Unlocked!" e-mails when I do something I haven't been able to do since surgery like putting coffee cups on the TOP shelf with my left hand (the one that now has no nodes.) I had fun hanging out with my family this past Saturday night. I realized that even now, I would not trade lives with anyone I know, and that I am still, actually, the happiest person I know. Cancer did not take that away from me after all, even though, for a while there, I thought it had.

I started out taking the Klonopin twice a day as originally prescribed, religiously, but have, over the past few days, found that I can go longer and longer each day before I feel like I'm having that jangly, tense, feeling in the pit of my stomach that signals the anxiety and dark place might be sneaking up on me. I can think about the cancer, and the changes in my life, and the road we have ahead of us, and uncertainty of my future --either with, or without, the Klonopin, and I can handle it. Pretty soon, I'll be able to get thru entire days without it or any other anti-anxiety drug. I know this, and I am content, and grateful to have it when I DO need it. It's helping me learn to cope.

I'm not saying that everyone who is having a rough time should automatically medicate it. All I'm saying is that it made a WORLD of difference for me, for NOW, and really, NOW is all we have, right? It's an option, and it's an option that should be considered, without fear, and without any shame that it means you're not "strong" enough to do this on your own. Maybe you ARE strong enough to do this on your own, but I am not ashamed to admit that I was NOT. Oh, I'd still be alive right now (I think) without it, but I wouldn't be laughing at my husband's jokes, or planning lunch with a friend on Sunday, or only "sort of" dreading the start of chemo next Monday. I have to have a bonescan this upcoming Monday and I know that there IS the possibility that that could present me with a very bad surprise that would change everything, and I am scared, but I'm not panicking, I'm not freaking out, and I'm not going to.

For some people other ways of getting through those roughest times might be better. There are lots of options for learning to cope with this awful diagnosis. I found the one that worked for me. I hope that everyone finds the one that will work for THEM. It's awful, what we're going through, but it doesn't have to be THAT awful. Talk to a doctor, like I did, let them know just how distressed you are, and let them help you. That's what they are there for.

I'm a drive-by poster, so if you want to respond to me, or ask a question, send me a PM! Dx 9/26/2013, ILC, Left, 5cm, Stage IIIC, Grade 2, 11/22 nodes, ER+/PR+, HER2- Surgery 10/13/2013 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left; Prophylactic mastectomy: Right Radiation Therapy 5/6/2014 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy 6/24/2014 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy 9/22/2014 Femara (letrozole)
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Nov 13, 2013 06:01PM 4sewwhat wrote:

Lisa,

I finished my rads today! Diagnosed a few days before Easter. 2 surgeries, chemo and radiation since then!

Why am I telling you this? Because I finished today! It has been a blur but all in all easier than my imagination had scared me into believing!

You will be on the other side of this much sooner than it seems right now!

Best of luck for an easy, boring journey while you kick this to the curb!

47 when diagnosed 15 months after I originally went to doc about lump I found :( oncotype 13. Cold capping pics on my blog LaughingThruBreastCancer.blogs... Dx 3/25/2013, ILC, 5cm, Stage IIB, Grade 1, ER+/PR+, HER2- Dx 5/20/2013, ILC, 6cm+, Stage IIIC, Grade 1, 22/32 nodes, ER+/PR+, HER2- Chemotherapy 6/14/2013 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 9/30/2013 Breast, Lymph nodes
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Nov 14, 2013 04:20AM Momine wrote:

4sew, congrats on being done!

Dx 6/1/2011, ILC, 5cm, Stage IIIB, Grade 2, 7/23 nodes, ER+/PR+, HER2- Chemotherapy 6/20/2011 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel) Surgery 9/13/2011 Mastectomy: Left, Right Radiation Therapy 1/9/2012 Surgery 3/8/2012 Prophylactic ovary removal Hormonal Therapy 4/1/2012 Femara (letrozole)
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Nov 14, 2013 07:53AM 4sewwhat wrote:

Thanks! Happy

47 when diagnosed 15 months after I originally went to doc about lump I found :( oncotype 13. Cold capping pics on my blog LaughingThruBreastCancer.blogs... Dx 3/25/2013, ILC, 5cm, Stage IIB, Grade 1, ER+/PR+, HER2- Dx 5/20/2013, ILC, 6cm+, Stage IIIC, Grade 1, 22/32 nodes, ER+/PR+, HER2- Chemotherapy 6/14/2013 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 9/30/2013 Breast, Lymph nodes
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Nov 14, 2013 05:35PM lisa137 wrote:

4sewwhat: Thank you, and congratulations! The greatest thing is that right now -- in this interim where I've mostly recovered from surgery and haven't started chemo yet, I'm finding that some days, like yesterday, my "new normal" isn't really THAT different from my "old normal." And as of today, I'm *still* the happiest person I know. Hanging in there. :)

I'm a drive-by poster, so if you want to respond to me, or ask a question, send me a PM! Dx 9/26/2013, ILC, Left, 5cm, Stage IIIC, Grade 2, 11/22 nodes, ER+/PR+, HER2- Surgery 10/13/2013 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left; Prophylactic mastectomy: Right Radiation Therapy 5/6/2014 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy 6/24/2014 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy 9/22/2014 Femara (letrozole)
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Nov 18, 2013 03:10AM Katarina wrote:

My tumor was 12.5 cm - a honker. Heavy lymphatic and blood invasion too. I love the look I get from doctors when they read that. They look totally dumbfounded.

And I've found they are dumb. They missed it for 6 years and I had mammo's and UTsounds every 3 to 6 months for dense breasts.

Diagnosed in 2011.

I'm going to be here for a long time to come. I'm in God's hands now. I hope to post here 10 years from now. Hang in there and love everyday of your life. We are blessed to have each day. I still take life one day at a time but I'm optimistic.

I sat down and figured out what I would want on my bucket list and now I'm doing those things. Having fun too.

Hugs,

Kat

Dx 3/23/2011, ILC, 6cm+, Stage IIIB, Grade 3, 3/13 nodes, ER+/PR+, HER2+ (FISH)
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Nov 18, 2013 03:26AM Momine wrote:

Kat, I am with you. I don't put things off anymore and it is both fun and liberating.

Dx 6/1/2011, ILC, 5cm, Stage IIIB, Grade 2, 7/23 nodes, ER+/PR+, HER2- Chemotherapy 6/20/2011 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel) Surgery 9/13/2011 Mastectomy: Left, Right Radiation Therapy 1/9/2012 Surgery 3/8/2012 Prophylactic ovary removal Hormonal Therapy 4/1/2012 Femara (letrozole)
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Nov 23, 2013 01:40PM - edited Apr 16, 2014 02:56PM by Moderators

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Jan 3, 2014 08:07AM Woodylb wrote:

to all you ladies a big bow and congrats from the heart. I was diagnosed in 2010 ILC stage IIIb 22/23 lymph nodes invasion ER+PR+HER2 - chemo ACT and radiation + lumpectomy and femara. Now after almost 3years it has reoccurred with liver mets. I am getting ready for another battle. Did any of you ladies go through this? Or anybody who survived it? God bless you all  

Surgery 12/14/2010 Lumpectomy: Right; Lymph node removal: Right, Sentinel, Underarm/Axillary Dx 12/15/2010, ILC, <1cm, Stage IIIB, Grade 2, 22/23 nodes, ER+/PR+, HER2- Dx 12/15/2010, ILC, <1cm, Stage IIIB, Grade 1, 21/23 nodes, ER+/PR+, HER2- Hormonal Therapy 8/31/2011 Femara (letrozole) Radiation Therapy 8/31/2011 Breast, Lymph nodes Dx 12/10/2013, ILC, Stage IV, Grade 2, ER+/PR-, HER2- Chemotherapy 1/5/2014 Carboplatin (Paraplatin), Gemzar (gemcitabine), Taxol (paclitaxel) Hormonal Therapy 5/27/2014 Aromasin (exemestane) Dx 10/15/2014, HER2+ Targeted Therapy 11/9/2014 Herceptin (trastuzumab) Targeted Therapy 11/9/2014 Perjeta (pertuzumab) Chemotherapy 11/10/2014 Taxol (paclitaxel)
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Jan 3, 2014 07:28PM 4sewwhat wrote:

Good Luck Woody!  So sorry to hear of the recurrence.  I am scared because of my large number of nodes as well.  I wish the best for you in your battle.

Now go kick its a$$ to the curb again for good!

47 when diagnosed 15 months after I originally went to doc about lump I found :( oncotype 13. Cold capping pics on my blog LaughingThruBreastCancer.blogs... Dx 3/25/2013, ILC, 5cm, Stage IIB, Grade 1, ER+/PR+, HER2- Dx 5/20/2013, ILC, 6cm+, Stage IIIC, Grade 1, 22/32 nodes, ER+/PR+, HER2- Chemotherapy 6/14/2013 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 9/30/2013 Breast, Lymph nodes
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Jan 5, 2014 02:49AM Robyn_S wrote:

oh Woody my heart goes out to you!  I hope that your treatment will send the beast back to its hole! 

I think deep down that most of us with large tumours and positive nodes expect the news one day but just hope that it is far off into future. 

I wish you strength and positive results with your treatments! ((Hugs))

Age 46 @ Dx, BMX, FEC/T, Rads, Tamoxifen, Femara, DIEP 2012 ( the works!!) Dx 3/8/2011, ILC, 6cm+, Stage IIIA, Grade 1, 1/5 nodes, ER+/PR+, HER2-
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Jan 16, 2014 09:09PM Woodylb wrote:

hello ladies,

I am officially stage IV metastatic breast cancer with biopsied liver: same ilc but only ER+ , already started my carboplatin+ Gemzar  this week i have  Gemzar alone then rest two weeks and repeat again for 6/3 times then we scan. I have a good feeling wish me luck ladies because i intend to kick hi a$$ lllloooollll god's willing. 

Surgery 12/14/2010 Lumpectomy: Right; Lymph node removal: Right, Sentinel, Underarm/Axillary Dx 12/15/2010, ILC, <1cm, Stage IIIB, Grade 2, 22/23 nodes, ER+/PR+, HER2- Dx 12/15/2010, ILC, <1cm, Stage IIIB, Grade 1, 21/23 nodes, ER+/PR+, HER2- Hormonal Therapy 8/31/2011 Femara (letrozole) Radiation Therapy 8/31/2011 Breast, Lymph nodes Dx 12/10/2013, ILC, Stage IV, Grade 2, ER+/PR-, HER2- Chemotherapy 1/5/2014 Carboplatin (Paraplatin), Gemzar (gemcitabine), Taxol (paclitaxel) Hormonal Therapy 5/27/2014 Aromasin (exemestane) Dx 10/15/2014, HER2+ Targeted Therapy 11/9/2014 Herceptin (trastuzumab) Targeted Therapy 11/9/2014 Perjeta (pertuzumab) Chemotherapy 11/10/2014 Taxol (paclitaxel)
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Jan 17, 2014 12:05AM karen1956 wrote:

I don't remember how large my tumor was, but I had at least 3 tumors in my right breast as well as lymph node involvement and on February 3rd, I mark 8 years since hearing those dreaded words....There are still some of us long term survivors around...there is a group on the stage 3 thread for longer than 5 years!!!  

Woodylb...sorry that you are stage IV

Karen in Denver, Dx 02/03/2006, ILC, stage IIIa, ER/PR+, HER2-,
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Jan 17, 2014 09:54AM Margaret77 wrote:

Hi  Macb

In 2001 had a mastectomy. I had an 8x7cm tumour, (lobular)  i had 13  armpit lymph nodes removed, 12 had c in and it had spread out of them into my armpit fatty tissue. They told me the odds were 75% it would be back again in 2 years.  I had pre op chemo to try and reduce it, but it fragmented.i then had post op taxotere , followed by radiol + armpit radiol by choice,  and went onto a trial of letrozole which kept stuff at bay till I came off it  in 2011. Secs were found in my liver and bone in November 2012

In retrospect, I wish I had done more with my life in between, tho I did learn music , to sing, NLP, did an art diploma, travelled, am involved with my church.  I still wish I had done more and worried less. BUT we are all different and you will be you, which is as it should be. Try hard to live each day as it comes...its not easy, but free stuff is on the net about mindfulness and even NLP.  I am now again on chemo, possibly indefinitely.

Try and take full advantage of your good years.God bless you. You will cope

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