No chemo or Mast, do you feel like less of a survivor?

QueenK

In my head I don't but today I realized that sometimes it is hard NOT to feel that way.Let me explain.I pretty much had a bungle of tests over a year and the end result was NOT supposed to be cancer.My surgeon and family Dr balked at the suggestions (bloody discharge) and no one expected it to be.

So on it goes, I was 32, mom was busy with my grandma, husband distant.No friends at least ones that seemed to care.It was a very dark period.No one showed up to clean my house, bring me cupcakes or lend any support.It was horrible.I was alone all the time. My recoveries from both surgeries VERY difficult with lasting nerve damage.Pain, all the time.

Then came radiation, alone.My mom was there, husband was there but nothing.

I went to a couple support groups that mostly focused on issues such as mastectomies, and side effects from chemo.I had neither.I actually had survivors tell me I was lucky and had it "easy".

I think it really hit me today.Whenever I am at an event (this was was a start up event for the BC walk in July) I feel WIERD. I am always interested in others stories.But I tell mine, small lum, lumpectomy, radiation.I get one of 2 reactions.Why did I NOT choose chemo OR that I was so lucky.

Just because I didn't lose my hair, get VERY ill and still have my breasts.It was no walk in the park.I really stopped today and asked myself, "Are you the one thinking this?" No I am not.I think of myself as 100% survivor with trials and tribulations.

Please do not ream on me here, I am simply venting.I work in health care, and have taken care of people during chemo, I know it is horrible.I just can't equate.

Anonymous

Jenny - I am thinking you are catholic, or a former catholic - just kidding!

Hey - you had cancer.  I  am sorry that no one was really "there" for you.  You still had cancer.  I know what you mean.  I am stage 1, am doing CMF chemo as my oncotype was high intermediate, but still I feel weird to compare myself to some of these brave women that have harsher chemo, or more complicated surgeries (I had a lumpectomy).  But, I still have had cancer, and it was invasive.  

I have run at least 8 race for the cures never imagining that one day I would be wearing the pink shirt.  I don't know how that is going to feel when I do it.

I try to focus on being lucky that my cancer was caught early. I don't think being lucky is bad,  it is what it is.  You are a survivor.  

reen

jenny,  you are lucky, but you are no less a survivor then anyone else.  My first BC was like yours, only radiation.  Second one I had chemo and radiation.  Second one was much harder, but no matter how bad or good you got it,  you got it treated, beat it, you are 100% a survivor.  Be proud! 

my560sel

Jenny: YOU ARE A SURVIVOR - like the rest of us. I, like you had a lumpectomy and was supposed to have radiation but have opted for a bi-lat MX (sometime in June) because I just don't want to go through this again. At the beginning, people seemed very concerned. But the further I get away from my initial surgery for the lumpectomy, the more they seem to think everything is OK and like what I went through wasn't a big deal cuz I'm still walking and talking and acting like my old self. I tend to not show how I'm feeling so the fact that I "keep on truck'in" as they say has them all believing that it was a cake-walk. You and I know different as does every woman on this site. Hold you head up high and to heck with those who think otherwise!

Terri

nelia48

I can only say, that I would give anything to NOT had to have to go through all that I did.  But it doesn't make you any less of a warrior or a survivor than ME!  The emotions and fears and tears are all the same. 

Can I give you an example?  My sister just had a mammogram last week, and on Friday, at 4:45 in the afternoon, her primary care dr. calls and says she has to come in first thing on Monday morning to go over her results.  The gal wouldn't tell her anything on the phone, so all weekend she has been crying, saying she could never go through all that I went through.  But. . . . what if they caught it really early, it's small, and she just has a lumpectomy and some radiation -- like you?   Does that mean she's less of a survivor than me????  I will be soooooooo happy for her if that is the case.  And if we ever do a walk for the cure, I would have my arm around her just as tightly as anyone else that went through the chemo and surgery!

Do NOT belittle yourself!  There will always be someone who had it worse than you ---- and someone who had it easier.  Someday, someone will come along beside you who might not be as bad off as you --- but just remember these feelings and allow her to grieve her losses and pain, too.  I wish I could have been there for you.  I would have dried your tears and gone with you to all those crappy tests and treatments!  And we would have gone out to lunch afterwards and had a great time!

Lift up your head!  Enjoy today!

QueenK

You guys are awesome..I have someone reading over my shoulder and can't say much except, THANK YOU...more later

ktym

Jenny: That's why I hate it when people not going through this ask details about treatment, want to compare, etc.; disappointed to hear it would come from a support group.  Chemo lasts only months to a year (for most), Mastectomy the same to recuperate depending on reconstruction.  It is not the treatments that define this lousy disease.  It is the fear and vulnerability that comes from worrying about recurrence and knowing your life has changed forever.  Anyone who told you that you are lucky was a boob (sorry, the word that came out, no pun intended).  Heck, LCIS isn't a cancer but some end up on Tamox, some with bil mx's, and they also live with the fear we all do.  To me that is what being a breast cancer survivor is about. 

GloDee

Jenny:  I come from Baptist and Methodist background, but don't think that has anything to do with support from family, friends and others who love you.  My family and friends were very supportive, but I still am not sure if I am a "survivor" or not either. I am six-weeks post-op today from lumpectomy and it has been the worst pain and health situation that I have been through.  I would not wish it on anyone.  I can only imagine what mastectomy and chemo are like and I feel so sorry for those ladies, but I also know that my pain, physical and emotional, has been great.  Will see my oncologist this Thursday for the first time.  Probably no chemo for me either, probably radiation.  I, too, have been asked, "Didn't you just have a lump or knot taken out?"  "Why are you still so sore?"  "At least you still have your breast."  None of these comments have come from BC ladies though.  I hope all of us who have experienced this devil disease feel empathy with each other.  I was on the other side myself until 6 weeks ago.  I had no clue!  My big thing is prayer.  I feel guilty asking for relief, health, help in getting through this...when so many others have what I think of as "much worse" situations.  That's true, but does that make us less devastated?  I appreciated the replies that have come back to you.  They helped me too.  Hang in there.

Dx4/20/2009, IDC,1.5cm, Stage 1,Grade 1, 0/1 nodes,ER+/PR+, HER2-

rdrake0

I, too, have had those feelings, especially at first.  I felt guilty because the others had had it so much worse.  Lucky me, yeah, right.  No one treated me like less of a survivor.  But I felt it inside.  Especially when the onc said no chemo.  A second one did, too!  Now after two lumpectomies and 6 weeks of rads, I do feel more like a survivor.  I guess over time, the fear of the unknown, of not knowing if or when it will show its ugly head again, is what we all have in common.  That is what makes us survivors!

PauldingMom

Hey, I'm with you there. I am going to have my lumpectomy on the 8th and God willing no radiation or chemo. Won't know till after the surgery. But while I go through this my mom is also going through it but with a masectomy. I feel very guilty, first because I won't be able to be with her during her surgery and immediate aftercare and secondly because my surgery will be easier than hers will.I know how you feel. Should I really carry the pink ribbon bag my sis got me to the hospital? Do I REALLY have "the C. word"

Last night I laid in bed and had myself a good ole pity party and you know what, I do really have cancer. I will lick it, and I will be a so called cancer survivor. Just like YOU!

This entire post is a great one.  

lynninpa

I can relate.  I had a lumpectomy, a re-excision, and my Oncotype Dx score was 18 so chemotherapy would not have given me much benefit, so I didn't do it.  I am still doing radiation and will soon start hormone therapy, but I feel like my story is a walk in the park compared with some.  My family, friends, coworkers and neighbors have all been so wonderful that I feel like I don't quite deserve it.  So at some level I don't feel like I belong to the sisterhood, even though I will have to worry about recurrence for the rest of my life.  Thank you for this topic, I thought I was alone in my feelings.

KEW

Hi--I did have a BLM, but no chemo based on Oncotype and other tumor characteristics.  I'm on Tamoxifen and have a full hyster/ooph. Sometimes I feel like I don't belong anywhere, my co-workers seem to think I didn't have "real" cancer since I returned with hair and expanders.  At support groups I feel like the women see me as an outsider since I didn't do chemo, I don't go anymore.  I got tired of explaining my decision, and hearing one more person say, "how could you not do chemo!" I had my 6 month check up with my onc today and shared this with him and he was awesome.  He said, "Well, you should go to Europe.  You are the face of a cancer patient with you kind of tumor.  Healthy, no chemo, and you have the same survival rates as someone with your stats who did do chemo here in the US."  He said in Europe, most countries, chemo wouldn't even be offered and they have the same survival rates, or better.  He believes there will be less and less chemo being done here as more people trust the Oncotype test. 

So maybe we are in a time of transition and in ten years not having chemo won't be so strange and isolating.

It will be strange wearing a pink shirt at RFTC, if just registered.

Karen

slyguppy

I wouldn't ream on you; everyone's story is different. I don't think of myself as a survivor and would never go to an event, wear a ribbon or cap, buy a magnet, blah blah. I had cancer. I've had lots of things. Cancer is not the worst. I had five surgeries, I dealt with all of the alone; no husband, no family. I went to colonoscopy alone (no sedatives). I would never do a support group (right after my BC diagnosis I called an advocate, and she was just awful, she made me so depressed). Support groups didn't help with fibromyalgia, son's autism, son's tumors, chronic fatigue syndrome, being dumped, whatever. Other things helped more. Don't feel guilty or self-blaming; you are who you are, and your feelings are your feelings. I don't like the term "cancer survivor" (please, friends, it's just my opinion, not an indictment); anyone who has been alive more than 25-40 years has "survived" something. anyone who is alive is surviving. Cancer, divorce, poverty, murdered child, epilepsy, diabetes, job loss, whatever. Cancer is a pretty common thing. Someone who has had a tiny skin cancer had it too. Someone who died 4 days after diagnosis, same thing. My BC experience was (so far) easier than the experience of some but much worse than the experience of others (I had post-surg hematoma and emergency surgery, I had clostridium dificil, I had failed blah blah)....but no pink shirts for me, I don't like pink. My son's autism has been "better" than the experiences of many, but we're all tapestries of our life experiences, whether they be suicide, sudden infant death syndrome, or world travels. but yes, to answer your question, I feel I went through "less" than people who faced Stage 3 or 4 and had months of chemo. To answer your question, yes.

slyguppy

my 56 whatever your screen name was up there...are you sure sure SURE? you've done all your research and thought it through? Double mastectomy? Are you SURE? i know women say "I don't want to go through this again" (I had the biopsies from hell n 2001, all to find out I had no cancer; I was 14 hours in the hospital after going in for what was to be three, nd then a week of recovery, all to be benign).....but going through mastectomies is...golly, all I can give is my own experience. it is a major and permanent thing with many potential complications and NOT a fun outcome in best case scenario...no more nipple sensation ;-(....implants (if you get them) that probably need replacing and always need monitoring....creepy feelings (itchy, painful, numb blah )....

 we all make our own decisions but ....unless BCRA positive, I....golly, mastectomy is not a fun thing, not a bit.

danix5

Your absolutely right to feel a little let down that your cancer is not BAD enough for some people!  I know that cancer sucks in all categories 0-4, it is just a different degree of sucks!  You are better of then some but still not as lucky as a lot.  I feel any brush with cancer is life altering and should be understood by all as something really scary that totally sucked!  

Don't focus on what you didn't go through, trust me mastectomies do suck, I had that but no chemo and I can relate to you, with people acting like it wasn't that bad, it is.... I had over 12 maybe 15 lumpectomies through the years, I forget exactly,  all B9 those didn't suck just something I had to do.... the cancer DCIS High grade comedeo in two areas totally SUCKED!

Wear your BC survivor button proud!  You are and will always be a cancer survivor, sorry you had to be!

Dani

koreapatra

Jenny,

I can totally relate to your post.  I was initially diagnosed with LCIS in right breast.  Had a lumpectomy.  But after post lumpectomy MRI,  I opted for a bilateral mastectomy.  I just didnt' want to deal with all this every six months. The path report came back with IDC in my left breast.  I am only on Tamoxifen.  So I feel like I got off very easy compared to a lot of you ladies.  BTW, I had my exchange surgery today!!

I think a lot of my guilt came from a casual friend.  She is battling lung cancer.  I was made to feel guilty for only having breast cancer.  I was made to feel guilty that breast cancer gets all the funding.  She and her husband even made me feel guilty for keeping my job and having insurance.  Anyway...to help myself during my breast cancer saga,  I basically cut off contact with them. ( Her husband had sent me an email stating how I caused my breast cancer. )  My husband will periodically check up on them as are in desperate straights. 

But I feel everyone's cancer journey is different for them.  Different treatments.  Different stages.  Different levels of support from family and friends.  But we are all the same in the respect that we were told we had cancer. And even though I'm a healthcare worker, I was still scared when I was told I had cancer.  I remember being scanned for a CT by my friends at the hospital where I work.  I knew what to expect...but I still felt terribly lonely.  I am terribly lucky to have so many friends and a great husband and family to care about me.  But at the end of the day,  cancer and reoccurence are usually on my mind.  So I guess in the end, we are all survivors of not only cancer, but fear, pain, unending anxiety.  But hopefully we can still hold onto hope. 

-Rebecca

slyguppy

I've thought aobut this and the fact is, your situation IS very different, and that's OK. think about it. If someone says "I had a baby" it could mean she had 60 hours of labor, a grand mal seizure, and an emergency C-section; or it could mean she had 90 minutes of labor and a baby who popped out with two Apgars of 10. If someone says "I climbed a mountain" it could mean she scaled K-2 or it could mean she strolled up Mt. Whitney. Someone who had cancer might be someone who had a patch of basal cell carcinoma removed, or someone with Stage IV lung cancer or the most acute kind of leukemia. So yes, your situation IS different, and you ARE luckier than many BC patients.  And that's OK.

Seabee

Do I feel like less of a survivor because I didn't do chemo: Heavens, no!  I already remember my course of treatment as a long string of unpleasant encounters with huge machines, a drain, and various sizes and shapes of needles.  Chemo might have made the experience a bit worse, but it was more than bad enough already. I feel like a survivor for having escaped a course of chemotherapy that would have prolonged my ordeal for 3-6 months and probably, according to my oncotype score, have done me no good whatsoever. I feel like a survivor for insisting that I take the oncotype test, which none of my doctors mentioned as a possibility. I feel like a survivor for refusing to deal with an oncologist who referred dismissively to this test when I brought it up as a "test for womwn who like to know their risk of recurrence." When one is blessed with doctors like this, who needs enemies?

Whenever someone expresses surprise or dismay that I didn't do chemo, I pity them for never wondering if they actually needed it.

Merilee

I consider anyone who has heard the words " it is cancer" a survivor. It is a wonder we all didn't die of a heart attack. My God it is every woman's worse nightmare come to life.  When you first get the news you really don't know the stage or even what questions you should ask.  You simply feel doomed and betrayed at first. I think the emotional piece of cancer makes us all survivors no matter what the stage, grade, treatment, etc...

Nutella

I read this post with interest - this is my first posting by the way, am in the UK and find this site very good indeed.  I was diagnosed at the end of April this year  with DCIS and invasive ductal carcinoma - surgery (WLE) on 18th May with sentinel node biopsy. Pathology confirmed 2.4 cm IDC grade 2 with associated  intermediate DCIS - lymph nodes clear, ER 8/8 and PR 1/8. Next up is radiotherapy and tamoxifen.

My sister in law was diagnosed almost 4 years ago with a very aggressive cancer and her prognosis was poor - she endured the whole works, surgery - but not mastectomy followed by chemo,radiotherapy and herceptin. Thankfully she is now coming up to her 4th year clear of cancer which is brilliant and she has been a great source of information and advice to me.

A friend of hers has this week also been dx with what sounds like a similar,aggressive cancer and will go through the whole thing too. I feel positively lightweight in comparison and a bit of a fraud in some ways,which makes me feel bad. I think it comes more from me than anyone making me feel bad as all my friends and family have been great  and very concerned for my well being - but seeing little children at radiotherapy with no hair rather brought it home to me that by escaping chemotherapy I have been very lucky. 

I agree that there will always be people whose disease is worse and equally people whose experience is not as 'serious' as my own but can understand the feeling of 'only' having a small breast cancer can bring to light a whole range of feelings.  My very best wishes to everyone on here xxx

JeninMichigan

I am a stage IV girl right from the start.    And of all the things I have gone through, the MOST stressful and the HARDEST part to digest was those three awful words.... You Have Cancer!!   Those words haunt you horribly.    Don't diminish any of what you went through because it is not as extensive as someone elses journey.   It is mentally, physically and emotionally painful.   I had a lumpectomy and after 1 1/2 years still suffer alot of tenderness and nerve issues from it.   I do celebrate in the fact that I am lucky as compared to many others.  It doesn't make my battle less but I will take any bit of lucky I can get.   Many of my fellow Stage IV sisters live constantly on chemo... I did only one 6 cycle round and am cancer free.  Many women really have it hard in radiation.... I did great.    You are lucky that it is early and that you could avoid a mast/chemo... but you still have gone through a whole lot.  I am sorry you did it without support too.    Can't imagine that.  I celebrate that I had my mom and sister and lots of friends holding my hand along the way.    It is scary and no one should have to do it without support.   Once you have had cancer and I think especially breast cancer, you are a survivor.  You live every day wondering if it will come back and get you and of course you have the scars, radiation tattoos/burns to remind you of it every day.   

God bless and keep you well.

Jennifer