I don't feel like a true survivor

My3Ksmom

THANK YOU!!!! Everyone that I talk to when they find it was type 0 say oh then it really isn't cancer you will be fine.

Fine? I just had a chunk taken out of my breast that has 6 inches of steri strips, my bras don't fit right, my breast is considerable smaller that the other one, my breast has no roundness left on the front above my nipple or on the left hand upper side. Everything now tilts to the left, I am in pain from surgery. I find out next week if I have to have radiation. If someone ever says it to me again I think I will slap them.

AAARGH!!!!

I am a survivor, even if I have less to complain about than 90% of the all others that have had or have cancer.

TamiSue49

Hello Spunky55...

I know exactly how your feeling, I too was diagnosed with DCIS early July 2013. It was stage 0 grade 2, After a double biopsy, I opted for a double Mastectomy. With only 1 lymph removed, that pathology came back clear. 5 days after my surgery, my Doc. called and said I had made the right choice in having the Mastectomy, because my left side was completely covered. I do not require Chemo or Radiation. For myself, I have dealt fairly well with the surg. recovery, but, have to be honest in saying I have gone through some stages of mourning, and have had self esteem issues to overcome because of the scars. Now I am going to have a DIEP reconstructive surg. in Jan. that will take 12 hours, and go through another recovery phase of 6-8 weeks. Don't get me wrong, I know this will all be worth it in the end, but, this is not just a typical Boob job, this involves a lot of pain, and emotional recovery, so I think if your story is anything similar, you have been through enough trauma to consider yourself a survivor for sure! Yes some women have had a much tougher journey, but we are all in this together, and I guess the main point is, we are all here! So know this... You are a Survivor!!!!

cynthiaintx

I'm going through this feeling as well. My surgery was a simple (well, relatively!) lumpectomy, the surgeon had clear margins, and despite him saying he took "quite a bit" out, I don't notice anything different, except for a 5" scar down the side of my left boob. Now I'm in radiation treatment. I'm tired and my boob is sore, but hey, I figure at least I still have her around! I feel "unworthy" when I'm at the oncology center, as there are so many who have it worse off than me, and I hate to make any kind of complaint.

I'm not sure what to call myself... I don't feel like a "survivor" - more like I headed things off at the pass.

And people say "good thing you caught it early!" Well, it wasn't early, the lump showed itself about two years ago, and I didn't have health insurance, so... good thing it was in situ, or I could have been in a much worse position.

Bottom line - I count my blessings, am thankful for my minor brush with this horrible disease, and pray for those who do have it.

edelweiss01

Hi there,

I feel the same way!

I was diagnosed with DCIS in May, 2013. Stage 0, grade 3, multi-focal. I needed a mastectomy on the affected side but opted for bi-lateral because 1) I also had LCIS and 2) I didn't want to worry as much about recurrence.

My pathology report was great: clear nodes, no further evidence (although LCIS was also found in the other breast), so I didn't need chemo, radiation, or hormone therapy.

I felt glad and guilty at the same time. My husband was so confused as to why I wasn't doing cartwheels after hearing the news, and I couldn't put my feelings into words. It's not that I wanted to go through any treatments, but I almost felt wrong saying I'd had cancer at all. Compared to how much so many other people have gone through, my issues seemed small.

I recently did a breast cancer walk/fundraiser with my family and friends, and the organizers wanted a picture with all the survivors. I felt wrong being in it!

I don't know what else to say, besides I can understand how you feel. I do think we've been through a lot, but I appreciate that it's a different journey than that of someone who's had to go through so much more.

Hang in there! I think it's going to take a long time to process all the emotions.

aaoaao

Spunky55, please know that you are a BC survivor. I will acknowledge that my treatments have been more extensive but the emotions and fears that you went through were real. Having breast cancer changes you...permanently. The testing, the results, the surgery, the trying to make the right decisions, the never ending fear that it might return affects all breast cancer sufferers. This disease, especially during the active treatment phase, encompasses our lives and the lives of our family. It gives you an instant grasp of your mortality. Yes, celebrate that your treatments are finished and thankfully didn't have to include chemo, but still recognize that you had breast cancer and that alone makes you a survivor. When I was Stage IIb, and I had chemo, I also didn't feel as much as a survivor as someone who was Stage IV. I think this is a normal reaction because we don't want to feel like whiners when someone else is suffering more. It doesn't matter...you had to fight for your life and make decisions most people don't want to make. Please honor your battle and in my opinion you're a warrior and a survivor. We are also breast cancer sisters no matter our differences.

Ariom

aaoaao! What an amazing post, I can't thank you enough for voicing your perspective on this very emotive issue.

Although I am in the same Dx situation, as the others here who are feeling this way, I have not experienced the same feelings. I also don't ever actually think about being a "survivor" per se.

After all the callbacks, testing, waiting, surgery, and pathology results, it was only that final path report that steered us in a different direction to those who have had to face the worse Dx and the treatments.

I belong to a BC group of amazing women. There are a couple of ladies who are stage lV, who are in treatment, others who were Dx long ago and have had a recurrence, or indeed some with a new primary in the other breast. There are several of us who had DCIS and all opted for MX. We are all there for each other. We meet once a month and also go on outings as a group. There is a strong bond there that we all feel.

Although this is a BC group, BC is not our focus. More often than not, we are discussing other subjects, but if anyone wants to vent or talk about BC, then that is what we do. We feel that we have all been to the scariest place there is and we are forever changed by the experience.

When I was Dx, my surgeon told me I had a "form of BC" that was contained in a duct, but until my final pathology we would not know if there was an invasive component. I never questioned the "validity" of his "form of BC" statement. I don't question it now.

All I really know, is that I have joined a sisterhood of women, and some men, who have had a life changing experience. I know I'll never be quite the same again, and will always have that niggling fear about it happening once, will it happen again? I don't dwell, but it is there.

I am reminded every time I take my clothes off, that I was touched by this disease, but not bad way.

I am very comfortable with where I am.

flagirl

Diagnosed with DCIS and IDC stage 1 type 2 had lumpectomy left breast three nodes removed. Path report says clear margins and nodes negative. I am wondering if I will get radiation. Please let me know if your cancer was similar and what radiation treatments you had. I am on Anastrozole and probably will remain on it for some time.  I am feeling lucky and glad that I am one of the lucky ones. I pray for my bc sistas who don't have it so easy and hope for the best outcomes.

Tuckercat2

I feel exactly the same way. I did however have to letrzole and found it is more difficult than the surgery. I mean, I found out I had breast cancer and 1 month later had both breast removed and reconstruction at the same time. The drain bags were awful. But I looked around at all the others doing chemo and radiation and all I had to do is take this one little pill. I didn't feel like I survived anything. Just another operation....  I still feel that way although I do have fatigue from that little pill but really? I really understand where you are coming from.

ndgrrl

HI,

I also had IDC stage 1 grade 2 .  I had a lumpectomy and am currently taking Tamoxifen for 5 to 10 yrs.   I had high dose internal radiation(brachey therapy) 3 weeks after my lumpectomy. 

spunky55

Hi,

The only treatment I had was the surgery.  Because I was being watch due to having the BRCA 1 gene, it was caught very early.  Given the tumor was smaller then 5mm, I did not need chemo.  Because my nodes were clear, I did not need radiation.  I am not on hormone therapy either because my tumor is triple negative and is not hormone related.  I hope I answered your question.  Good luck!

Mommyathome

Deafitmom4,

If your nodes came back clear why was your diagnosed changed from DCIS to IDC?

Annette47

Mommyathome -

In case deafitmom4 doesn't see this (her post was made quite some time ago and she apparently hasn't posted here in months), the difference between DCIS and IDC has nothing to do with positive nodes.   It has to do with whether the cancer has spread outside of the duct and into the breast or not.   Looking at her description, it would appear that 4mm of IDC was found hiding among her 5cm of DCIS, which can occasionally happen on final pathology (something is found that wasn't initially apparent on biopsy).   Since her nodes were clear it would appear that the cancer had left the ducts but most likely not left the breast.

MizzaB

The cancer was detected early, and there were two areas on either side of my left breast.  I chose to have both of my girls removed in order to deal with concerns of a returning cancer. No further treatment was necessary - praise God. I understand how you feel and don't feel like a true survivor.  I don't feel like I belong to the 'club' of the true heroes out there. 

vbishop

Some of these comments and experiences mirror many that we discussed in the Cancer Envy thread.  There I posed the question if others minimized the diagnosis or treatment plan of women with Stage 0 or Stage 1 cancer.  I see it is more wide spread than I thought.

At the end of the day, we all need to support one another and respect each other's journey, regardless of stage or treatment plan.

TechLady

I have felt what a lot of you have described.  I had a 5cm multifocal area of DCIS on my left side and chose to have a BMX with reconstruction and yet I sometimes feel guilty saying I had cancer. When I was first diagnosed my mother in law told my husband it wasn't even cancer, why would I even consider surgery?! It made me so mad and frustrated.  But the fact is it IS cancer and yes, I was fortunate it was all contained in ducts and I didn't need chemo or rads  but at the end of the day, all our lives have been (and continue to be) touched by this disease.

I totally agree with vbishop - the key is support and respect of each other. I have found much comfort in reading these forums and my prayers go out to all...

ziggypop

I'm stage 3 and don't consider myself a survivor or a fighter. What I hope is that on my best days I can handle myself with grace. What I am glad about is that I can come here and bitch whine moan and be self pitying when I need to be. Sometimes,think, we also get to feel a bit of justified pride in ourselves - a mastectomy isn't easy,a lumpectomy isn't easy, being told you have cancer isn't easy, and worrying about how you deal with the cancer you have and how other people will think about you isn't easy. So sometimes - while I won't call myself a survivor or a fighter, I do think I deserve to treat myself kindly. I think we all deserve that. 

vbishop

Well said, ziggy! 

I haven't treated myself to anything in a long while.  I think it's time for a mani-pedi!!

vbishop

Mizza -

Don't minimize what you've gone through.  Chopping off the girls is not easy! 

I don't like the term survivor or even fighter.  Anybody have suggestions for another word we can all feel comfortable about using?

TB90

Ziggy:  I love what you said.  I do feel very proud of myself.  I feel that I have been stoic, brave and positive even though I have "only" had to deal with DCIS.  I am suddenly so very thankful for my parents or whatever it was that made me this strong.  I realize that I have one of the greatest gifts there are . . . a positive attitude.  It took this damn breast cancer to help me recognize this.  For that, I will forever be thankful.   

Lilyluv

I've got DCIS. What did I survive?  An easy lumpectomy, and  right now 4 weeks of radiation for a contained cancer that may never have turned invasive anyway.    Not a fun ride to be sure - surgery and treatment and pain and discomfort for any medical condition is never fun.  I dislike going for rads every day.  But I hate going to the dentist a heck of a lot worse!  It's not affecting anything functional like walking or talking or digestion or cognition.   So no, I really don't feel like a survivor with dcis and just see this as just another health issue to be dealt with and gotten through like any other.   

TB90

Another thing.  Since my diagnosis, I enjoy people so much more.  Actually, I am referring to strangers.  I appreciate the sweet technician that told me I could squeeze her hand while receiving a needle into my nipple, and the pre-op nurse who had me laughing so hard my abdomen ached, and the sweet lady just my age waiting with me for our first appt. with the radiation machine and how we exchanged knowing smiles, and you ladies.  I hope I never lose this increased awareness of this special connection with others.

ziggypop

Hi Lilyluv - I am so glad for you that your treatment went easily (well - at least as easily so that it could be compared to a series of dental appointments). Many women have a relatively easy go-round with this shit (thank goodness); some women with what might sound like the most simple diagnosis go through raging hellishness. Either way, I will stick by my basic idea that if we can handle ourselves with grace - great. And that we all deserve to treat ourselves well - which we do after dentist appointments, too. : ) 

percy4

I have to say, I don't feel like an imposter, which is the concern I'm getting, here.  The thing I like about this forum is that they do divide the sections into places people feel they fit.  I can't, for instance, truly experience the things a Stage 3 or 4 woman is feeling (thank God).  I do feel that my life has been disrupted, that I and mine have been frightened, that I now am going though rads, and that that makes me really feel, for the first time, that I am a cancer patient.  The surgery was a breeze.  My prognosis is great.  But I never thought I'd ever turn into a parking lot named "Cancer Center".  I, and all of us, do have to live with, and put into one corner later, the fact that we have had a cancer, and that it might come back.  In my case, probably not, but maybe.  I do feel my small cancer is gone, rads are a precaution, and I will be fine.  Still; I will never feel as carefree as someone who hasn't had this.  I don't even want to term myself a survivor, because I don't want this to define me.  But I am definitely in "the Club".  Again, that is why I'm pleased we all have our sections here, with women like us who can appreciate how we feel.  I will leave this behind in my life, as best I can, but will check in with regularity to give back what little experience I have to other women in the future, who have been through what I have, and may feel as I do, now.  Love you all!

Beesie

I don't feel like a true survivor, and I'm glad about that.  I feel fortunate that my breast cancer diagnosis didn't require me to go through treatments that would give me the feeling that I was a survivor.  Like Lily, I don't think that I've 'survived' anything. Yup, I had to have a MX, and I hated that I did.  I live with that every day, not always happily.  But I live with it, I don't 'survive' it.  It's just part of my life, something I went through.  Not something I like, not something I'm glad about, but nothing so horrific that I feel that it's something that I had to 'survive'.  

That's not to downplay the experience.  Getting the breast cancer diagnosis and going through the surgery process wasn't easy, and I agree with ziggypop that we should recognize that and treat ourselves well for having gone through it.  It's also true that hearing the words "You have cancer" are life-changing, whatever the diagnosis.  Stage 0 or Stage IV, we all have been changed by the diagnosis, emotionally, mentally and physically.  

No one should be dismissive of what we've gone through.  But we also should be cognizant of what we haven't gone through.  No chemo, with all it's side effects.  No threat of death from the diagnosis (for those with pure DCIS; just a bit of a threat for those of us with DCIS-Mi).  When I look at both sides of the ledger, the side that lists what I went through, and the side that lists what I haven't had to go through, I consider myself lucky.  Not lucky that I was diagnosed with breast cancer, of course, but lucky that I was diagnosed with such an early stage breast cancer. 

It doesn't matter to me what label someone else puts on me, or whether they think I'm a member of their club.  I know what my experience was like, I know how I feel about it, and I know how I label (or don't label) myself. I don't look to anyone else to define my experience. I define it as it suits me. I hope that what's we all do.  There is no rule that says that if you've had breast cancer, you should feel like and label yourself as a survivor.  If you feel that you are, great.  And if you don't, that's great too.

Ariom

So perfectly put Beesie!

I never think about "Survivor" either.

I do actually feel very fortunate for receiving the Dx of DCIS and not something much worse. It's certainly not something I would have wished for, but I know and accept, I am forever changed, because of it.

I can understand exactly what TB has felt too. I recognize that awareness, or shift, and the feelings are very positive.

Ziggy, very succinct! Treat yourself well, is great advice.

Percy, your feelings are spot on. No one should be defined by this.

I don't feel like an imposter or any of the other labels that compare my early Dx with others who have much worse Dx than me. In saying that, I do remain cognizant, as Beesie says, of what others go through with treatments and side effects or the threat of death from Dx.

If someone doesn't want me in their club, because of my Dx, that's just fine with me! 

Lilyluv

ziggypop,  You're so right about deserving to treat ourselves well.  Our bodies do need more rest and to heal no matter how much cancer we have.   Treatments take their toll, even if it's a relatively simple surgery or radiation or a biopsy.  And maintaining a sense of humor helps most of all sometimes.

april485

Amen sistahs! DCIS or Stage1- IV, we are all forever changed, just in varying degrees along the BC spectrum. This disease should not exist at all in an age when we can do so much. That is my only complaint. Find a damn cure or a way to prevent cancer already! Love to you all.

mrenee68

I think we all have to look at our own set of circumstances and determine what "label" if any "label" we want to give ourselves. Each of us has had our own unique experience, good, bad, or indifferent. I look at myself as I did what I had to do to get healthy again. A few things I think we can all agree on is that our lives have been changed forever, and we have been through some scary moments, but we are finding our way though.

We all need to be good to ourselves, as well as treat ourselves and others with respect. We each walk a different path and it helps to share our stories with others without the fear of judgement. Thank you all so much.