Any ILC long term survivors with really large tumor ?

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

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

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....

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.

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

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

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.

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.

4sew, congrats on being done!

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.

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

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  

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))

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