Upsetting incident, need thoughts!

I had IDC. While my bf (who lost her mother to bc) was very supportive, when I went to the dark side and talked about the what if's she down played it too. Turns out she was as scared as me.

One night while on the phone (she had a few glasses of wine in her), the conversation turned statictics and "it could come back" talk. She burst out crying "stop, I can't hear you talk like that. I don't know what I'd do without you. You just have to be ok."

I think we have a need to mentally explore all possible outcomes to be able to find peace with whatever happens and move forward. Those who love us need to know we're not giving up or giving in and it's unsettling to them when we get stuck in the negative thoughts.

Good luck to you and your friend. I hope you can patch things up.

This DCIS is reallly confusing - and the recent media attention which implies that it is being overtreated does not help and certainly does not help when erroneously applied to those diagnosed with Grade 3. I had a similar yet different kind of disturbing discussion over the phone with my college roommate when I told her my diagnosis - I actually was trying to downplay the seriousness of it, she snarled at me - "I have friends who have died of breast cancer - this is serious, don't minimize breast cancer." Kind of burst my little happy bubble - but her reaction is actually what drove me to learn more about breast cancer and to find BCO. I am still miffed, but at the same time grateful and she is still my dear friend. anyway - cherish your friend, unfortunately she is not going to be able to fulfill the talking about your fears kind of support you need right now. find ways to get this support elsewhere - here on BCO and look for a support group in your area which has members with DCIS. You have shared your diagnosis with very few people, consider opening up to others who will be better able to supply the kind of support you need and deserve at this time.

I have one other observation. I had one doc -- an oncologist I saw once -- who tried to make me feel guilty because I had DCIS instead of the things some of his other patients had. Somehow or other, he thought that was a logical reason for me to consent to his treatment plan. I didn't see how it followed that just because he had patients sicker than me, that made me an ingrate for thinking for myself.

I gather there's quite a lot of guilting of DCIS patients because we've got this cancer that hasn't gone invasive yet. Your friend sounds like she's one of these.

That's all rubbish. Making you feel guilty won't help people with invasive cancer one bit. It will only hurt you. We're all walking on a razor's edge here. Cancer is unpredictable and mean. Even DCIS sometimes turns out to have tossed out cells that come back as mets. There is no certainty with cancer. And nobody should feel guilty for catching this killer disease early, when it has a good prognosis.

Your friend didn't behave as a friend. I hope she realizes how badly she treated you and makes amends.

My girlfriend accompanied me to my pre-op education session and when they showed the drain that would be inserted during the mx, I had to help her from fainting! She has never doubted that I had cancer. I am so sorry that you are having this experience. Friends should be there no matter what. And I for one do not accept that they cannot handle it. You do what you have to do for your children, family and friends. You figure it out because they need you to. Those are the friends we all deserve.

So sorry to hear about your "friend's" reaction to you. Yikes! Reading this made me sad. You have every right to have your own feelings and it's wrong for her to judge your feelings and tell you if they are valid/invalid. DCIS is cancer cells - yes they are contained in the milk ducts.. but having DCIS myself - my surgeon and oncologist also say it shows my body is capable of making cancer cells. And that is scary news. I wouldn't talk to her anymore. She's not a true friend unfortunately. You have every right to your own feelings.

I just want to add that it sounds like this woman IS a good friend overall, and I'm a bit shocked by the responses saying to get rid of her. People are different and handle things in different ways, and friends can't always agree on everything. I think that Annette is right, it's probably best to not discuss your diagnosis and treatment with her any longer, or at least not in anything but the most general way. I have a friend or two that are wonderful overall but haven't been the greatest to talk to about my diagnosis, so I reserve those discussions for the friends I've found to be easy to talk to.

It bothers me that you are unable to express yourself with a "best friend".

I'm so sorry you are going through this. It's extremely insensitive and hurtful. My biopsy showed DCIS. I had a lumpectomy, and a small portion was invasive, hence the treatment i'm undergoing now. I'm not saying that to scare you, but you never know what else could be lurking around. In my opinion, a true friend wouldn't treat another that way!

Hugs!

Well said, Trailrose. Part of me wants to apologize that I "only" have DCIS. Then I remember that the C stands for carcinoma. No matter what it's called, cancer is cancer and the diagnosis is chilling.

I was the one who said to drop her. I based that on long experience. Facing this diagnosis is tough enough. Trying to also be oh-so-careful about your friend's reactions is -- at least to me -- a stop too far. Her apology, followed by the "not being positive" comment, wasn't an apology. I've come to realize that the "not being positive" stuff is both a cliche and a burden to cancer patients. It's not up to us to affirm our docs and besties. As I said, it's enough to deal with all this, in and of itself.

Having said all that, I get -- big time get -- the feeling of isolation and not having anyone but your husband for a friend. I feel for you, having this happen to you at a time when you're so vulnerable. I'm beginning to think that DCIS patients are being somewhat victimized by a medical establishment that is responding to political pressures to lower costs, even if it's to the patient's harm. I was totally unprepared for what I walked into with my docs, and I'm still kind of reeling from it.

What you friend has said is a hard blow to have to take, coming from someone you want to trust with your emotions and fears during this time when you are so vulnerable. I couldn't handle editing my conversations with a bestie about something so important to me as this. I don't mind doing that with business relationships. But this is your friend. And she's not behaving like a friend. She's wounded you when you were already deeply wounded, and she violated the trust of your friendship.

Whatever you do, I can tell you that I understand. I've tried to hang on to poisonous relationships after they had gone bad, and it always ended badly. But I know how miserable it is to be alone, especially now, when this disease makes us feel alone already, and that aloneness is multiplied by having an early cancer that puts us in line for all sorts of aggressive assault from people with agendas that aren't about us, either as patients or as people.

I still think your friend has sucked up a snootful of knowing a little bit about nothing much and is wrapping pompous certainty around her ignorance. Ie, she's a jerk. There's a lot of that going around in medical circles where it concerns DCIS. The docs seem to have declared war on their patients. I think she's been drinking that kool-aid and is just, oh-so-full of herself.

If she treats her friends like this, just be glad you aren't a patient in her care.

I need to say one thing: I'm still angry about the way my docs treated me. I am going to have to deal with all that once I get past the surgery and get back on my feet. It's probably going to be like shoveling out a horse stall. :-)

I apologize if I've dumped too much of that anger here.

Blessings to you Mckaylaleigh. I am so sorry this has happened to you. But you do have friends who understand here.

Hi Mckaylaleigh,

It's nice to hear that she reached out to you after your disastrous evening. But I'm really sorry to hear that she's going down the "you're not being very positive" route.

In a sense, you're about as positive as you can be, given that you're positive they've given you advice that you should (a) have both breasts removed, and (b) (maybe?) take anti-hormone medication that could throw you into early menopause. And that advice (not unreasonably) is upsetting! So you went to your best friend, who told you, essentially, that you're taking yourself too seriously.

And, BTW, there may be more "fun" to come, based on the post-surgery pathology reports, especially if the diagnosis is changed.

It sounds like you want to see what you can do to repair "the rift" (as I suspect she has accurately named it). So let me see if I can make some suggestions & observations.

1. Professional Debate about DCIS as Cancer/Pre-Cancer/Pre-Invasive Cancer. Depending on when she was in school and when she was doing continuing ed as a mammography tech, she may have heard about the then-ongoing debate about whether or not DCIS was "really cancer." Well respected persons & institutions came down on both sides of the "debate." She may well have had teachers/books which firmly taught that it wasn't cancer. There were (maybe still are?) suggestions that it should even be renamed to remove the word "carcinoma" from the name! (There's a note in Beesie's "Layman's Guide" about this...). If you like, I can probably find some older threads (from when I was "new" at BCO) discussing the "is DCIS cancer debate."

2. Appeal to Expertise. Since you'd like to re-enlist her as a supporter, you might appeal to her medical "expertise." Tell her that you felt bruised and battered after your conversation last night. (If I've interpreted your posts correctly?) But that you've thought about what she said about the internet and Wikipedia being bad sources of information—because the good is mixed in with the bad! And that you generally agree with her that caution is called for, so you've been very selective about what sites and sources to use. You've even looked "through" the information you've been given to see where the information on the sites comes from (if you've been noticing the source of the info sited by various members whose posts you've found particularly informative).

If your docs have made suggestions about what sites are reliable/good to visit, mention that. If not, simply say that you've felt comfortable the information you've found at breastcancer.org is congruent with what your docs have been telling you. And that you've found information helpful to you in advancing your discussions with your docs—it helps you to formulate the questions you want to ask your docs. (If, of course, all that is true.)

But you'd be happy to have her opinion on the sort of information you've been using. Then show her the pathology pamphlet you printed out earlier, and get her to Beesie's "Layman's Guide to DCIS" thread as examples of the information you've been using. Ask her if she'd mind taking a careful look at those (as examples of the sorts of information you've been getting) and letting you know what she thinks. Maybe even show her/print out the threads you've started here.

However don't let her give you "instant feedback." You want her considered thoughtful opinion. Plan another discussion later. You know your friend, will you need to bring it up? Will she actually read the material?

3. Overtreatment of DCIS? Tell her that you'd read in the popular press (if you had!) about the "overtreatment of DCIS" and were initially hopeful that you wouldn't need drastic treatments, since it was "only DCIS." However your docs had disabused you of any such happy thoughts. There's a spectrum of DCIS, but you're on the wrong end of the spectrum! Your docs say that a BMX is both appropriate and recommended! With this—and hormonal therapy planned at this point, it's hard to think of DCIS as being "only"...or even anything you should be feeling good about.

Yes, you know that things could be worse. You could have been hit by a bus, or been in a plane crash, or been given a diagnosis of some horrible wasting illness or been notified of the death of a loved one. Or have a diagnosis of Stage 4 BC. But that doesn't mean that the treatments you'll have to endure for DCIS aren't bad. And you were hoping that you would be able to lean on your friend as you go through pretty drastic surgery and the recovery from that surgery. And working through the changes that all this will make in your life.

4. Ask for Help. You had hoped that she would "be there" for you. But you felt pretty hurt after your evening together. [Note that this is where you want to use "I statements" instead of "you statements" to (hopefully) avoid her feeling attacked and then feeling a need to "defend" herself. So "I felt _________" not "You said _________." "I need (or will need) _______" not "You should have or should be ready to ______."

Were you hoping that she could help you in the immediate post-surgery days? Maybe something like "I've been told that I won't be able to lift my arms above my shoulders for at least two weeks [to give my lymphatic system a chance to heal] and I won't be able to lift more than [five pounds—or whatever limit your docs surgery instructions include] can you help me think through rearranging my home/planning how to get things done w/in those limits?"

5. Friendship/Mindfulness? With all of the bad news you've gotten from your docs, you felt hurt and not understood when told that you weren't being "positive enough." It's hard to be up all the time when faced with the reality that you'll be having major surgery and some major body-image changes to go along with them. You've only told four people about your diagnosis. You had thought she was one of the few people you could "let your hair down with." Were you wrong?

If you like, you can offer her an out. There's research being done on whether mindfulness practices improves life outcomes and how breast cancer survivors experience them--and perhaps result in positive cellular level changes! Perhaps that's what she meant to discuss with you when she said you weren't being positive enough? Would she like to be your meditation buddy?

I was a participant in one of those studies several years ago as the UCLA's Mindful Awareness Research Center (MARC). "Here's" a popular press-level article about similar research done at another university. There are resources available at the MARC website. For example, you'll find some free guided meditations "here."

HTH (I hate to think of you without your best friend's support),

LisaAlissa