Taboo subject

mollynminnie

Hello everyone...

I cannot begin to tell you how hard this is for me to post here, but I need to get it out and see if anyone feels the same way I do.  You see, I was diagnosed almost 5 years ago, with a huge tumor.  Stage 3, Grade 3 and BRCA1 positive. I had positive lymph nodes as well. I had a double mastectomy, 35 radiation treatments, and a full hysterectomy.  I also did ACT dose dense chemo.  I was and am a single Mom of 4 small children.  I work full time, and worked full time all through treatment. I also have always volunteered extensively with many different charities and continue to do so.

Okay- here is the part I feel bad about.  I have such a hard time with people who are DCIS or Stage One complaining how hard it is, how they can't work, how no one knows how they feel!!!  I know that everyone handles things differently-  and everyone has a different experience with chemo- but I was SICK- and I had to force myself to get up and take care of my kids and work everyday.  Yes- it was hard- but I was so empowered and felt so proud of myself.  I never expected (and still don't) any recognition or praise from anyone else- I did it for ME and my family.

BUT- I have seen many posts where someone who is at a lesser stage complains how they can't work- and how do they get Disability.  I know that is is none of my business and I don't knoe theris situation- but I cannot help but get a little angry!  I think some people (a small minority) use a cancer diagnosis to say "poor me" and try to get out of things they want to do.  Yet- there are many Stage IV women who work, volunteer, help others and give back to society on a daily basis.  Those women I applaud and have MUCH respect for.

Anyway- I just had to get this out.  I feel like such a bad person for thinking this way.  Does anyone else ever feel this way, or if not- does anyone have any suggestions to help get me out of this mindset??

Thanks so much-  love you all....

Molly

Lowrider54

Molly...I am going to share something with you.  I was a single mom and worked all through my chemo 11 years ago so I get how hard it is/was.  I posted on a DCIS board the other day - they have guilt about being 'lucky' to be dx'd early and not having to go through what we have.  It is no less horrorfying when learning of the dx not matter the stage.  Last year, I made it to the stage iv SS Mets Cruise Line and it was, well, horrorfying does not come close - I thought the stage II - stage III was hard - no comparison.  (I was a 'tween") 

You are not a bad person and I applaud you for expressing your feelings.  That what this board is all about.  I will tell you that if I have to do chemo this time around...I am NOT working through it again. 

Anyway, as you have these feelings, I wanted to share with you a bit of what some of the early stagers feel - perhaps it will help a little...I can only share my post with you but you can sure look things up on the thread....

All you DCIS gals...I wish you guys wouldn't feel guilty about not having to go through the 'try to kill you to save you' routine.  I was a 'tween' the first dx - stage II - stageIII - out of 25 nodes removed, 4 positive (the cutoff) and just starting to invade the 5th (stage III).  It gave me options of different chemos - my hair was down to my ass and I wasn't looking forward to losing it so, there was a chemo cocktail that lessened my 'survival' from 85% to 82% but offered me a 30% chance that I would NOT lose my hair.  The other cocktail would surely have left me bald.  So - I picked my hair - I didn't not see a huge significance in 3% but it was significant that having already lost a boob, I really didn't want to lose any more parts.  I went through 8 months of the crap (longer than most because of the cocktail) and did have to cut my hair up to mid back and it did thin but I didn't lose it.  People would tell me I couldn't have had cancer and gone through chemo because I didn't lose my hair - there was a bit of guilt watching the wigs and scarves come in and out of the treatment room while I sat there hooked up and with my own hair (there was a bit of a hairless issue going on elsewhere however - and I was still shaving my legs...lol).  I had cancer, same as them - the crap sucks.  I get a pretty good idea about the guilt. 

I was 10 years NED - its back and in my bones only so for now, hormonal treatments.  And the prayer that I make it with it staying in my bones until the next great thing in treatment - bone mets as a chronic condition.  When dx'd with the mets, I had my reconstruction finished - surgical complications prevented it but I still had the stupid expander it and it had to come out so I now have 2 perky little B cups (an up side), lost 30 pounds, and looking at life very differently. 

It is a life changer no matter the stage as I said before - but was I 'lucky' not to lose my hair and take a 3% gamble with my life?  Its back - I think it would have anyway and I have way more important things to concern myself with than the 'why' is it back...its called LIVING! 

Hugs and Blessing to you all....LowRider

diana50

i think our stage...our diagnosis...our pathology....is as indivdual as we are. no cancer is exactly the same....and each of us have our own life history...developmental stage...age...emotional/psychological strengths and weakness...health...history.

there is no right or wrong way to feel. in my support group in which i participated for a year on a weekly basis during my treatment..there were all different stages...from DCIS to stage 4..with some of the members passing away.  i realized then that each of us struggles and each of us does our cancer in our own way even though we share "cancer diagonis"

i think expressing how you feel and what you think is good. from my experience..of all of this...now 8 years out...my ideas have changed about a lot of things...from my feelings when diagnosed to where i am now. 

cancer just is. that is all i know. how we deal with it is as indivudal as each of us are. that is what i think...and that is all i know.

hugs

Bugs

If you're going through chemo, the side effects are the same whether it's stage 1 or stage 3.  I, too, am a single mom and had no choice but to work.  The company I worked for did not have short term disability.  However, if I would have had it...I probably would have used it.  There were days that I ..well..let's just say I'm glad I wasn't in charge of something too critical. hehe

mollynminnie

Thank you so much ladies for your input!

I absolutely agree with everything you all said-  logically and mentally I agree.  But- I still can't help that gut reaction when someone is complaining and I see that they are Stage 0.  BUT- I know that my experiences do not lessen any anyone else's and I will try to remember that.  And I was VERY fortunate that I had such great support from friends and family, I realize that some people sadly do not have that.

Thank you again!  I think I was feeling horrible for having these feelings.  Cancer is Cancer and it does suck BIG TIME!!  No matter who, how, when why, etc....   and we all get through it how we get through it- no right or wrong.

Thanks for not making me feel awful for saying what I did.  I will remember what you all wrote if I start getting angry again.

I think you may have all helped me be a better, more tolerant person today.... 

Thanks!!   

Molly   

jenn3

Molly - I don't think what you're feeling is wrong, I don't think there is a right or wrong way to feel.  This diagnosis affects us in so many ways and our emotions are all over the place.  I'll bet if you stop and think about it your anger or frustration isn't at the person with a lower stage complaining, it's probably more about what you're going through. I think it's very brave of you to be able to put what you feel out there, because we all have feelings that for some reason don't feel right, we know we shouldn't judge or discard someone else, but it happens.  I just posted something yesterday about helping friends with "suspicious" mammos and being there for them through the biopsies, then feeling hurt or upset when they were given the all clear.  I don't wish cancer on anyone and still don't know why I felt that way, but I did.  Our minds can go places we wish they didn't.

(((hugs)))

Jenn

LRM216

Molly:

Everything you said in your post is totally understandable and normal to feel.  And of course, the higher our stage, the more justifiable it certainly is.  Everything all the others posters wrote is equally correct. 

 I think the biggest thing we all share, no matter what the stage, is that after the diagnose we see that our futures will never, ever be the same again.  We all, early stage or later stage, will always wonder and fear just when the other shoe will drop.  I know I worry about that now, just as much as I did a year and a half ago. Being Stage 1 with clean nodes guarantees me squat.  Being triple negative doesn't help either.  Don't beat yourself up for what you feel - ever.

kittycat

Molly - you are very brave to post your feelings.  I was curious as to how people would react to it and I'm glad that everyone is sharing their thoughts/experiences in a positive way. 

I was dx with DCIS last year.  I was BRCA1+ and wanted to fight this thing as hard as I could.  I got a BMX with reconstruction.  I felt very lucky to have been diagnosed early.  I did some training for Komen and was going to be a speaker for them.  I wanted to encourage women to get their mammos and check themselves for BC because early detection was key.  I will say the surgery wasn't easy and the tissue expanders were NOT fun either.  I could have taken disability for work, when I had my surgery.  I decided not to, but sometimes think taking an extra couple weeks off would have been beneficial for my healing process. 

Then, 8 months after my BMX, I found out I had BC again.  I almost felt like I had jinxed myself for feeling lucky.  Then, I knew it wasn't my fault.  The cards had been dealt to me and I had to fight it again!  This time it was Stage 1, 3 small lumps, IDC with DCIS that was multifocal.  I am also triple negative and it had spread into my lymphatic glands, but not into my nodes or anywhere else.  I am currently going through chemo AC/T and will do rads.  After this, I will have a hysterectomy/oopherectomy.  I have worked throughout this whole process, but have considered going on short term disability, especially when my counts were really low.  Luckily, my onco put me on the 12 week Taxol and my counts went up.  I may have to use the STD if my counts drop and I can't work.... or for surgery, esp when I have surgery.  It all depends on how I feel and heal.  

All I have to say is CANCER SUCKS, no matter what the stage.  I have 3 local friends that have BC that I met through this journey.  Two of us are currently Stage 1 and the other 2 are Stage 4.  I think the scariest part of cancer is the unknown.  It's so unpredictable.  And waiting for all the results is so scary.  My sister also had BC, Stage 2, lumpetomies, then BMX and chemo AC/T.  She also had a scare and thought she had bone mets less than a year later, but ended up being okay - NED.  I have had good moments and bad.  I try to do my best to fight it and to keep a positive spirit. 

Good luck to you in this journey!  I wish you the best!  (((hugs)))

caaclark

Molly- I understand your feelings and I think they are normal.  I remember sharing those feelings with my husband and he understood what I meant.  But, he also pointed out that I seem more upset with the people who have been diagnosed at an earlier stage than me, compared to the people who have never even had ANY type of cancer.  Of course, that makes NO sense at all but this whole cancer thing really does not make sense. 

AnacortesGirl

First, I would like to say congratulations for being almost 5 years out.  That is very meaningful to me since I just finished active tx and I'm trying to get my life back.  Everyday I have a little more energy so the idea of getting to say "I was dx'ed 5 years ago" sometime in the future seems like a real possibility.

I had it easier than you.  My kids are adults and I have a wonderful DH to talk with and he gives me great support.  When I was in the midst of it all I would think about ladies like yourself.  I have a lot of respect for what you have done.

I completely understand what your feelings and how hard it can be to relate to ladies with DCIS and stage 0.  I have, and continue to have, trouble understanding where they are coming from.  At one point I thought about posting but I just didn't have the courage so I'm glad you did.  The anchor that keeps weighing me down is that my sister died back in 2005 at 52 -- she was initial dx'ed with stage IIIa ILC.  She was never tested but I'm sure she was also BRCA 2+ since both my mom and I tested positive.

You would think that I would be more understanding since my mom was dx'ed a month before me at stage I.  And this was her second bout.  We couldn't get her records from her first dx 30 years ago but it was probably stage 0 then based on what she can remember.  Since she lost a daugher she has a lot of guilt about her early stage dx.

So what's wrong with me that I can't be more compassionate and understanding?  In my heart I know that if I  had been dx'ed with stage 0 or I instead of III I still would have been a basket case.  I would have been so scared that the docs weren't doing enough.  That I would end up going down the same road as my sister because of the lack of preventative measures.  So you would think that I could be more accepting of their concerns and fears.

But it just isn't where I'm at right now.  I keep hoping that we will get a cancer support group in town so I can spend more time around other people with different stages and even different cancers.  I know I could use the therapy time talking and listening.  In the meantime I stay away from those forums because I know that I am not the right person to be trying to support those ladies.  So my way of dealing with it, for now, has been to stay away.  But this is one of the reasons that I plan on getting more involved with cancer related charities in town once my own life is back on track.

Thank you for having the courage to post and give me a place to air my feelings!

Diana63

Molly, as all of the other ladies have said, I understand where you are coming from. Also as others have said everyone handles it differently, and the effect of A/C is not the same for all of us. That being said I wished I hadn't followed along like a good little cancer patient, maybe I wouldn't have went into heart failure after radiation. I was dx at stage 3 and thought I was being a big baby during my first dx and treatment. I would come here and read of all of the other ladies working, running, swimming & etc. I thought gee I'm the biggest baby in the world, but what was happening was my old heart was about to give out. I worked until I couldnt walk anymore. So I guess I'm saying its hard to judge how someone else feels, maybe they have things going on under the surface. Things that no one notices because cancer is the main concern while we are in treatment. God Bless

camul

Molly, don't feel bad for how you feel.

 I too was a single mom w/2 boys, and worked thru the treatments, surgeries, had to transf to Idaho to keep my job and left my 15yr old with his dad, who was never around, so he wouldnt have to change his life.  I drove back home Thursday nite, for treatments and bloodwork on Fridays, then 6 hrs back on Sunday.   I went thru 6 surgeries, including the reconstruction.  I did have the choice of being laid off, but I had a family that needed my financial support. If I had the opportunity, I would have taken more time off also. 

4 others in my office had bc at the same time but they had more time with the company.  They all stayed out most of the year.  All but one of us 5 were stage 1.  I had a hard time thinking they were milking it at the time, but honestly I would have taken more time had I been able. 

I had a friend who was in the same boat and she went on ssi disability, same age, stage 1, and the diagnosis paralyzed her.  She has never gotten over it and probably never will......  it has stopped her from living.  There were times that it made me mad too.  Now I know how strong I am and this is what is going to help me now, 8 years later and stage IV, fight like hell to have some extra time.

I don't begrudge those who have the means to stay home, or anyone that this disease has had the ability to stop from living while they are still alive, and it was scarry at stage 1 with 2 kids at home and it is still scarry at stage IV, different but still scarry. 

Cancer just SUCKS and I do understand how you feel!  But I don't know of anyone who doesn't have an issue with poor me personalities.  I have my pity party times, but I even make myself sick after about 10 minutes! 

shawnna1212

Molly- Well first let me say how surprized i am that most every one was so compassionate with you, when i first read your post i thought oh boy here we go, my first reaction was to slam you, but i have had time to cool off since reading it and decided to post my opinion on your comment anyway,

I know you are probably mostly angry with what you have gone thru and maybe that is where your anger comes from, because i really cant believe that you would be so unkind as to pretend you know what anyone else has gone thru. You dont know there stories or what they had going on at home or what they have dealt with.

When i was first dx with bc it was a stage 1 i had to do chemo, rads, had lymph node involvement, had a double mx i also had to have shots in my belly 6 days a week, the shots were what made me so sick, I couldnt get out of bed, the pain in my whole body was excruciating i had to take pain meds to keep it under control i couldnt even hardly walk.

I did charities as well. excersized and took care of small children at home like you- but i had to have help and yes i did cry often from the pain and with what i went thru- because i had a right to, it didnt define me as a wimp or some one who couldnt handle the pain it just was, and i would of given any thing not to have gone thru that ever....Not every one is alike, and not every one has the same side effects or reactions to any illnes, but when it happens it cant be helped and it is ours not any one elses to own but no one should ever have the right to say weather we should or should not be able to handle things, i commend you for being so brave and able to work and do all the things in our normal life, glad you were one of them that didnt have the pain so bad you couldnt get out of bed if your life depended on it.. yes i too applaud the stage4 ladies they are my inspiration, but they dont criticize us for what we are going thru and neither should you- Im angry for my new dx i have now, but would never belittle any one who has a lesser dx they are still suffering and going thru there crisis as little as it may seem to you it is real to them.

Im not angry at you at all, just wanted you to know how i felt too and was hoping i can help you to see the whole picture- sending good wishes!

CoolBreeze

Here's my take on it. I think those who have DCIS, in some ways, have it harder than those of us who are lower stages.  ('m not talking about Stage IV).

I say that because they often have to radically treat a disease that won't kill them - because,so far, medical science has no idea if their breast disease will turn into invasive cancer.  

I have felt bad for them because they often have to do mastectomies when they know their disease is not life-threatening.

I can only imagine the horror about being told "you have pre-cancer, but in 10% (or whatever) of women,  it will become invasive cancer, and we have no way of knowing where you fall.  So, we recommend you cut off your breast."  

Fortunately, the study of DCIS and when it will become dangerous is one of the most rapid areas of growth in the breast cancer world.

Same with many stage I, who do face a chance of mets but still don't have to undergo major treatment most times. The risk of death is there for stage I, just read these boards to see how many women started out stage I and ended up stage IV. 

No, they often don't face chemo, or a year of treatments all the things that we stage 2-3 people may face.  

Women with DCIS face the fact that medical science isn't in the place where they can be told that there treatment is necessary or not.  And, so they have no choice but to do it.That, to me, would be every bit as hard as what I did, so I do have compassion for the ladies with DCIS. 

Now, as a caveat, the woman who have stage 0 pre-cancer and who had a lumpectomy and no other treatment - I do feel bad for her, I know her emotions are in upheaval and as they say: the worst thing that ever happened to you is the worst thing that ever happened to you, not the worst thing that ever happened to anybody.  It's when the comparisons start - the ones that show a lack of compassion that the problems start.  I had a woman with DCIS who had a lumpectomy but was left with a perfect breast and a 1/4 inch scar years ago, think we were on the same page.  I had a mastectomy, 6 rounds of chemo, a year of herceptin (still am) an expander in for a year and numerous tests and treatments - her entire thing was over in a month.

Yet, she seemed to think it was the same thing.  I understand emotionally it was for her, but it just isn't. 

 So, I do understand where the OP is coming from.  It's SAD that we can't share this thought.  The stage IV girls do it in their area. 

I don't compare my experience with a stage IV woman; I can't.  I do not know what facing death that closely is like and what living with treatment forever is like and I can't presume to do  so.  That is why the stage IV ladies have requested we not post in their area - because they have it the worst and they deserve to be protected from comments that may be well-meaning, but are hurtful.

We lower stage women don't need to be protected but we can certainly acknowledge that insensitive things happen.

I think compassion for everybody is in order - for their experience and for their pain - but not necessarily equality.

/donning flame suit 

AnacortesGirl

These are some great posts and it definitely is helping me look at the other side since I have been in the same boat as Molly.  I'm just glad we can speak honestly.  If we don't talk about things then we can't (or won't) change them.

littletower

Agreed, great posts. So glad Molly had the cajones to put it out there.

Laurie08

I wasn't  going to post ...but here I am!  I had DCIS and had a BMX on 6/30.  I am terrified of this disease.  My mother was diagnosed stage IV.  There is no comparison, I have not had chemo, I have not had rads.  I do have two children under the age of three and my concern is living for them and my husband, for me!  Because I am stage 0, I am considered lucky, and I am, I am glad I went for mammograms at the age of 30.  I am thankful, but it still sucks.  I am terrified of recurrence.  I am terrified- period- the difference is because I am stage zero, it almost doesn't count does it?  This is not from your post, this includes other posts, people in my life etc.  Who say it's not "real cancer".  It feels pretty real to me. 

We all have our own stories and our own load to carry.  I might feel the same if  I was in your shoes, I mean no disrespect and I do not disagree with you.  However, this has not been an easy experience for me either and because of my mother often relate to alot of stage IV posters- but I dare not comment....

Brenda_R

Lol, well I guess I am somewhat of the opposite. I get ticked off when I read posts saying that chemo is a breeze, and how this or that person worked all through it, and never gave up running, etc.  It used to make me feel like they were trying to make those of us that had a terrible time, feel bad about it.

I got over it.

Every person is affected differently.  How fit you were going into treatment and your age have quite a bit to do with it. 

I was run down, having taken care of a terminally ill, elderly Mom, for the year before I found my lump, and I was 50, out of shape, and stressed to the max.

Chemo was very hard on me. I was very sick. Most days my big accomplishment was walking the 20 feet to the bathroom, then back to bed. 

I don't begrudge anyone for feeling sick, feeling like they can't cope, or wondering if they can get disability.  Either they can or they can't according to their diagnosis and how they are re-acting to treatment. 

A cancer DX is tramatic for anyone.  

changes

Brenda R,

I agree with everything you said. When I was first diagnosed (Stage 1) I was referred to a different internet site. I didn't much like it, because the postings gave the impression that you should be able to do a chemo infusion in one arm, slay dragons with the other, while still running marathons. I didn't feel quite that strong and amazing. I was scared and overwhelmed, despite "only" being Stage 1. I continued to work for the simple fact that I HAD to - I'm single, and if I don't work, I don't eat (and don't have health insurance). I was fortunate to have a very good employer, but I also know of people whose employers try to get rid of them, or who have jobs that make it difficult to work, even if they are Stage 1 or Stage 0. I was in fairly good health going into this, but I can honestly say I would NOT have been able to work 8 hours on an assembly line while going through radiation (and fortunately I had a job that is physically easy). And there's really no way to predict who is going to have an easy time of a particular treatment and who is not. My surgery went like a dream - as easy as it possibly could have been. Radiation, nowhere near as easy as I had been led to expect.

I do NOT doubt that Stage IV is much worse than Stage 0 or Stage 1, but early stages are no walk in the park either. I was diagnosed 4 months ago and told I had an excellent prognosis - and today I had a bone scan to see if it has progressed. I won't know the results until early next week when I find out whether I am still Stage 1, or have jumped to Stage IV. And ALL cancer patients have to live with that reality - they may only be early stage until the next scan causes the other shoe to drop.

It's not a "suffering contest". Cancer sucks for all of us. We need to have compassion for one another. I understand to some degree where Molly is coming from. I find myself feeling resentful toward healthy people. I have to remind myself that it is NOT their fault that I am sick and they are healthy. It is just the luck of the draw. Resentment can really be toxic.

Karen

Lowrider54

Hi Again...having been on both sides of the coin - early stage and now mets...should I stay on my stage iv forum or be allowed to share my first go round with the beast to try and help others get through it?  It was 10 years in between and I had all the same feelings of chemo, working, kids and then cancer-free or 'cured', whatever the term and now faced with this mets thing - cancer has been a part of my life for over 11 years.  I feel for everyone that has any stage of this crap - IT ALL SUCKS THE BIG WEENIE in a very big way.  None of it is a walk in the park - oddly, the treatments I am getting now at stage iv are way kinder than the chemo I had to endure at stage II - the side effects are quite a trip though and I am on way more medication for pain and anxiety and depression but the treatments are easier - an infusion once a month and a shot in the butt once a month along with a combo of 8 meds and supplements to counter the se's.  I hated chemo and feel lucky that I get to give the hornomals a chance.  Oh, chemo is likely in my future but hopefully, as distant a future as possible.  The difference, I suppose - I did my chemo for 8 months every week, no rads and then the Tamoxifin and done.  Had surgery, lost a boob, had problems so no reconstruction.  Now I had surgery to finally remove the dern expander (can't do an MRI with the magnet in) so finally after 10 years, new boobs so surgery this time too but there will be no end to the treatment - it will change, it may end up chemo, I live in 6 months segments when I have my scans and that is the way it is.  Suffering?  Hummm...I was sicker than I have ever been on chemo and I don't feel physcially too bad now - mentally - no comparison - I faced the possibility of death then - today I face the almost certainty of death.  It ain't no picnic no matter the stage - we just getting more and better coping drugs and pain meds at stage iv...LOL  So kidding...sort of - if you need them, take them - everyone needs a 'mother's little helper' sometimes.  I so pray that some day we don't all have to live in horror of if and when the piano is going to fall on our heads. 

This board is a place to vent and let loose with feelings - over on iv, we are sure to title it a 'rant' so no one gets offended...

Hugs and prayers for each and every one of us!

LowRider

Cowgirl13

I tend to minimize what I went through.  It was a terrifying thought and my mother died of breast cancer when she was 56.  I was diagnosed at 63 (but i am a  cowgirl!)  I will say that i was laid low and couldn't have worked. The part that made it easier for me is that dying for me did not mean that i would never see my children again.   I don't have kids. Whenever I read of you gals who have children It knocks me for a big loop.

Molly, it was very courageous of you to post this.  Bless you. 

otter

See, Molly?  We can play nice! 

Seriously... I can imagine how hesitant you were to start this thread.  (The thread title says it all.)  I was hesitant to post a reply, considering that the thread is on the Stage III forum.  But, here goes:

IMHO, CoolBreeze did a wonderful job of analyzing what's going on in our heads when we react negatively to someone else's expression of fear or "discomfort".  I'll admit to sighing when I hear someone complain about the misery her treatment is causing, when that treatment is something less than the 4 rounds of Taxotere & Cytoxan I had.  I suspect someone who endured 6 rounds of TC, or 4 rounds of AC followed by 4+ rounds of a taxane, or anything administered on a dose-dense schedule, would sigh if she heard me fussing about the regimen I got.  Yet, chemo is chemo; so we deal with mouth sores or constipation (or diarrhea) or neuropathy or hand/foot syndrome, whether the chemo is for a moderately aggressive Stage I (like mine) or a slower-growing but "advanced" Stage III.  And, a mastectomy is a mastectomy, whether it's done for IDC or DCIS.

But, it's my own personal belief that stage does count.  The stage tells our prognosis.  So, as unfair as it seems, I'm more understanding of a terrified post from someone with a 5-cm, Grade 3 tumor and 11 of 13 positive nodes, than the same words from someone with a discrete 2 cm nodule of well-differentiated DCIS and no evidence of invasion.

Yet, ... as Laurie observed, "We all have our own stories and our own load to carry."  In other words, the equation is way more complicated than just the stage of our cancer or the steps in our treatment.  A woman in her early 30's who postponed marriage and children until she finished her education; someone who has a small tumor but learns she is positive for a BRCA1 mutation; someone who recently lost her health insurance coverage when her job was "downsized"; someone who is struggling to save her already-failing marriage; a woman who is the mother of young children; someone who watched her own mother suffer from, and die of, breast cancer... I think any of us could see how these women might feel more fearful, or might have a harder time during treatment, even if all else was equal.

I can't address whether someone should be eligible for disability income, or whether everyone should be able to work during treatment.  I know I would not have been able to work regularly during chemo, because of the type of job I had and the way my body reacted to the Taxotere & Cytoxan.  (I was already retired, fortunately.)  But, I know of quite a few women who did work during chemo.  Some women handled TC much better than I did; others got extremely sick and had to quit before finishing all the recommended rounds.  Even our oncologists (or our shrinks, I suspect) can't tell us ahead of time how well we'll handle treatment, much less how well we'll deal with the whole BC package.

otter

Laurie08

thank you for your post otter.

mollynminnie

Thank you to all of you wonderful ladies who have taken the time to post your honest thoughts on this subject. I have to say, you all would probably be shocked (as was I) at the number of Private Messages I have received, from people thanking me for posting this, as they have felt the exact same way and were too frightened (and still are) to put it out there.

I am glad I was able to bring to light a subject that it seems a lot of us have struggled with.  I have realized in my life that you should never be ahsmed or feel guilt regarding thoughts you may have.  You cannot help how you feel!  But- over time, your eyes can be opened to other experiences and over time you may look at things differently.

So- I am a work in process, but aren't we all?  

Thanks again and I wish you all the best,

Molly 

bigdogmom2

I have to say personally I find it sad that us DCIS people are looked at like we should just get over it and people don't understand where we are coming from, you are "cured" and thank god you didn't have to do chemo etc... In all honesty I caught myself saying this to people when they would call and tell me they are "thinking of me" and "I'm so sorry you have BC" etc... I would respond, "Ohh I'm great they caught it as early as possible" or "Hey if you were to get breast cancer this would be the one you want" WTF was I thinking!!!  Now with tests completed, the waiting for results over, the decision of what to do made, 1^st surgery done and TE's in, I am horrified by what I said in the beginning of this journey.  How could I disrespect so many women with cancer at any level?

You see I feel I have handled this pretty well (so I tell myself ;0), I don't complain much, never wanted help (although my husband insisted on it when he couldn't be there to help), went back to work quickly, mentally I feel strong.  But I have my moments when I think wow I'm 39 and had my boobs cut off... was that the right decision should I have just done a lumpectomy should I have had rads... and if you look at the after surgery section, I do complain that my TE's are causing me horrible pain.  I did feel guilty at first to post such a wussy post about pain from TE's when so many others were higher stages and going through chemo at the same time.  But I have to say I have received some very nice and encouraging responses from people at every level and am forever grateful.

I am one of those people that wants to throw everything at it kinda overkill if you will.  It may sound crazy to anybody that has had chemo or rads but there was a time when going through this that I wished I could have chemo or rads on top of the DMast, just to make sure they got everything.  I thought well if you can get so many different suggestions of treatment for the same diagnosis how do I know for sure that it won't come back or something hasn't escaped and is in there somewhere.  I like to think of myself as a rationale person but I can tell you DCIS or any other stage of cancer that feeling will NEVER go away, that coming from a person with "just" stage 0.  The fears are there, I don't feel comfortable being told you never have to do another Mammogram again, that doesn't make me feel better... I want to be sure it isn't there, I want people to test me and poke and prod just to make sure and if it is I want it caught early AGAIN.  This is my new me; I now worry, this is MY new life, something I never had before cancer so that is something we all have in common; unfortunately. 

I by no means mean this post to offend.  I too as a person with stage 0 thought as you did at one time.  Suck it up and get it over with and you will never have to worry or complain about this disease again.  I got a good slap in the face of reality, no matter what stage we are all scared, it never goes away and it is HARD!  Every complaint no matter how big or how small is a valid complaint :0)

I sat on this post for a while and wondered if it was my place to voice my opinion.  But then I realized I do have cancer and I can give you the perspective of a person with a much lesser stage than you.  I no longer feel guilty for being "just" stage 0.

Cheers to you all!  Much happiness and good health in your futures :0)

Cheryl xo

flash

Big Dog- I think you're right but wrong all at the same time.  You're absolutely right. CANCER is CANCER. 

 I think everyone here does get the emotional turmoil however I think the question is how do you deal with some people that go overboard in the "poor me, I had _____" in a disproportionate amount compared to their actual physical state of being?  I don't think it's necessarily a DCIS stage 0 problem. I've seen the milking phenomena occur with other diseases and even someone who is stage IV also.   Everyone responds differently to TX but some seem to want to milk the sympathy and it can be hard for others who are really experiencing much more difficulty.  Problem is, how do you tell who is really experiencing it and who is just narcissistic?  Therein lies the problem.  All of us want to help someone who needs help but it can be difficult when you are at the top of the cliff and can see the whole valley beyond the indivdiual stuggling to climb the small hill. It's all individual.  that's what makes it tough but also makes us so wonderfully human. So the more we can try to understand each other and our own perspectives the better we can support each other or appreciate ourselves.

We all deserve to have life go better; we all deserve to have cancer eradicated.  Unfortunately my magic wand hasn't worked for a few years now......

Hugs to all.  Best outcomes to all.

mymountain

Molly,

The more barriers we erect between us, acording to whatever our stats are, the less support and understanding we get from each other. It's very presumptious and judgemental to think that you know what it is like in anothers shoes.  The state of one's mental and physical health, their problems and misfortunes are part of who they are and how they cope.  If you are terrified of snakes and I'm able to pick them up, are you unreasonably fearful?  If I have two positve nodes and you have only one, shall I say "you don't understand or possibly know how I feel?"  If I'm raising 6 children while batteling the beast, and only raising 4, am I more worthy of respect and attention?  Cmon division makes us weak.  Respect all who travel this path no matter their stage.

MM

BonnieK

Molly -- you are very brave to post your feelings and I think most of us would admit to having similar feelings at least now and then.  We were dealt a different hand and we had to deal with it and we did. All of these different perspectives posted above are helpful and brave and honest. 

My feeling is that everyone who is dx'ed with BC responds differently and everyone is entitled to their personal response.  BC, at any stage, is a very difficult thing to deal with mentally and physically and some people are just better equipped to push through it, whether they are DCIS or at a more advanced stage.  We're all different and complex people in the same boat and it's good that we can be honest and also offer support to each other.

Bonnie

kellyj

I think I know how you feel Molly.  I was diagnosed at 37 with a lime sized brain tumor two months before I was diagnosed with breast cancer.  I remember reading posts on the brain tumor site of all the people who were scared to death of their upcoming surgeries and diagnoses.  I kept thinking, "if only that was all I had to worry about!"  Or if only I just had breast cancer to worry about.  I was lucky my breast cancer was diagnosed at a stage one, because the doctors said said the brain tumor would be back.  It did come back one year after the first surgery. I had radiation on it when it reappeared.  Then the darndest  thing happened.  My low stage, not aggressive, breast cancer recurred.  The chemo was very hard for me, but I kept plugging along and didn't complain.  I haven't complained about having two separate issues.  I won't let myself.   I feel if we take away the stage from the cancer, the treatment still sucks and is scary regardless.   Bless you all, Kelly

Anonymous

Madalyn ~ Good Grief!!  In speaking for myself, I feel I can post on the forum of my stage and not have to worry that I might hurt the feelings of other stagers here.. I come here to give support and get support and even to rant when I need to with my stage III sisters regarding this disease.  No one wants to create divisions here.  If we stage IIIers can't "rant rave whine or bitch" within the forum we belong to without a stage 0 , 1 or 2, feeling offended, than don't click on our forum.  I usually don't go to other forums unless I notice an interesting thread on "Active Topics" that I can relate to or offer encouragement.  This is a boundary issue and I don't feel that this topic was started to cause negative feelings or divisions, and maybe you might try to not be causing divisions by label this forum as "tribal"

Be Well,

Barb

mollynminnie

mymountain wrote:  It's very presumptious and judgemental to think that you know what it is like in anothers shoes. Cmon division makes us weak. Respect all who travel this path no matter their stage.

Wow- this was very hurtful to me.  Am I not able to post my feelings on a support board?  Did I not ask for help in dealing with these feelings of which I am not proud of??     Very confused and hurt to be called judgemental....  I DO respect all who travel this path- I volunteer to help ALL who have this terrible disease.  Not sure where my mountain was coming from....

Molly