Guilt and Judgement

Hi laurajean,

I saw your post and just wanted to say as someone who is going through chemo and the whole works, that you're just as entitled as the rest of us to describe yourself as a survivor and talk about your experience. Your fear and your pain are just as valid as mine. Chemo is nasty, but it's temporary. The fear that goes with a cancer diagnosis and the effects of a BMX last a lifetime, and to me those are worse than the chemo. Don't listen to those who say you don't know what it's like, especially if they're not dealing with the after effects of major surgery themselves

Excellent point Susan. I have felt guilty for the last 18 months because of my DX and treatment. But, last week I went for a follow-up mammography. Since I have regular visits with my RO and MO, and have had mammos every 6 months since my DX, I thought nothing of it. But I was called back for "additional views." 30 minutes later I had the results and all was fine. But... I cried all the way home from fear and sheer relief. Regardless of our individual experiences, we are all paddling along in the same leaky boat. This bastard of a disease is always lurking in the shadows.

Laura,

I too escaped chemo when I was first diagnosed, but sadly it was because I was already Stage 4, and I was told that Chemo "won't save you". It was very strange trying to explain that I was already too sick for chemo, while I had no symptoms, and no pain (other than from the MX).

My cancer has now progressed to the point where chemo is necessary, and I finally feel like I have "real" cancer. People could not reconcile a terminal diagnosis with no visible symptoms, but now they think I am heading for imminent death.

I'm not sure which is worse!

Sue.

Hi. I'm starting rads tomorrow. I haven't had to go through chemo and I count that as being very lucky. Yet, during my SIMs for rad, sitting in the waiting room with women who are bald, I start to feel guilty that I don't have a "worse" form of BC. Which is really ridiculous. I have no idea why I feel that way. It's completely illogical.

You may have already seen this article that was published it the NY Times.

http://www.nytimes.com/2013/04/28/magazine/our-feel-good-war-on-breast-cancer.html?pagewanted=all. "Our Feel Good War On Breast Cancer:

The image of the bc "survivor" in a pink tshirt, without hair is, in some ways, the gold standard. If a bc sister doesn't fit that gold standard she either is not fighting hard enough or is not a survivor or is not even "suffering" . How did it come to this? Would it be different if you had a different form of cancer?

If you haven't already, check out the article. It's a good read.

Good luck to you! And if people are saying these to you you do not need them around. Imho.

I did the bald chemo thing. On behalf of my tribe, I absolve you of any guilt. Go in peace.

Wow, these "people" who say that you are not.a Breast cancer survivor, what is their story? When I was going through treatment, a dear friend of mine was in the final stages of her battle with BC. Once when she was fussing over me about something, I said "don't worry about me, what I'm going through is nothing compared to what you're going through". She came right back and told me not to be silly, we were the same, and not to downplay what was happening to me.

Trust me, I'd do chemo again in a heartbeat if it meant that I would not have to have a MX. I agree with MagicalBean, one thing that we all have in common is fear

Tomorrow I will be going down to pick up a dear friend from her semi-rural home, and we will spend a Girls’ Night Out in a hotel nearby the hospital in Oak Lawn where she will have a BMX, no reconstruction. Yes, she has multifocal DCIS in one breast and ADH in the other. At 70, she wants it all gone and out of her life, whatever it takes. Don’t let current fads influence you: not all DCIS is merely a “precancer” in the same sense as ADH or even LCIS. Her DCIS is Grade 3 (my IDC only 2), 6+cm (mine is 1.3); hers is ER-/PR- and likely (as most DCIS is) HER2+ (mine’s hormone-positive/HER2-); and hers is full of comedo necrosis in dense, relatively small breasts. I needed only a lumpectomy and partial-breast radiation and she will lose both her breasts, and if the SNB shows a positive node and the path report any invasive cancer, she faces possible chemo as well. She may still get radiation due to the DCIS’ properties. The only thing I had she definitely won’t have to go through is hormonal therapy as her tumor is hormone-negative. Yet if anyone tells either of us we “don’t have cancer” (she because she has DCIS, I because I got to keep both breasts and all my hair) we’d be inclined take turns beating them up on each other’s behalf.

Yes, there are probably some Luminal A, grade 1 or 2, tiny (measured in mm rather than cm) DCISes that will never, ever mutate and become invasive. But yours (and my friend’s) is not one of them. The NYTimes jumped all over Dr. Laura Esserman’s theories about some DCIS being overtreated and basically extrapolated it to everyone with newly-diagnosed bc, not just DCIS. Heck, when I told my shrink (an MD, not a psychologist) I had IDC, he excitedly said “Did you see that NYTimes article..."

Nobody seems to understand I am physically worse off than I was when diagnosed with bc. How can that be? I just want scream the surgeries and the hormone treatment. I just seem to keep having more problems.

If you had cancer, you are a cancer survivor.....period. What type of treatment you had or didn't have is not relevant.

I didn't have chemo, but so what? I'm still a cancer survivor! People can be so silly! Do they think your experience is less than simply because you didn't go through chemo? Craziness!
Listen, you ARE a cancer survivor! You kicked cancer's butt! Period.

Key word here in our diagnosis is "carcinoma" and despite the naysayers, this is cancer. Period. Cancer that has not morphed outside of the duct, but cancer nonetheless. If someone EVER thinks I did not have BC, they can take a hike. My shrunken, deformed left breast and the way my joints feel each and every day from the AI tell me a different story. I am most definitely a survivor. So are you!

I am so sorry to hear this. And, by the way, and excuse my language, but BS! You CAN really blame them. For you to have a double mastectomy and not have your friends and family asking, regularly, how you are feeling, is absolutely appalling. I understand what you mean, in forgiving them, as people can be incompetent for reasons other than that they are jerks. They don't know what to do, etc., etc. My son called me twice a day for months, and I only had a lumpectomy and radiation. That is what one does when someone goes through an emotionally scary and physically difficult thing. You deserve better; but I understand that the people in your Life may love you very much. How other people know how to deal with and show things is no reflection on how much you are loved. They may just not be good at this. And I am sorry. You've been through hell. I care how you feel, and I hope that, each day, it is better and better. And we, here, care about you and are thinking of you and sending you love. PM me any time. I want to give you support. Love - P.

Of course u should feel that way each day goes by u beat cancers ass u have every right to say u are a survivor. Be strong don't worry about what people say. Praying u have a full recover stay strong. God loves u.

I had DCIS with just a lumpectomy, I don't like my margins, .26, but trusted my Doc on it. I wasn't quite sure if I felt that I was a 'cancer survivor' until I found that a co-worker (who I'm not friends with) was advised by her best friend, who's a nurse in my Doc's office, that I just had 'calcium deposits' removed and that it wasn't a big deal. 6 weeks of radiation, 5 years of tamoxifen. YES, I am a cancer survivor!
And yes, the nurse has been turned in for a HIPAA violation!