completely losing my shit need to talk to someone PLEASE!!!!!!

Many of us understand and I am so glad you came here to vent!   I was lucky in having a DH that allowed me every emotion that I wanted to have and feel and express without judgement.   Several of my family members - particularly one brother was adamant about how I had a bad attitude and I should be more positive.   The brother sister relationship has never been the same.    Please tell  you sister to come on here and read some of the stories here on BC.  Maybe she will understand that there are many women out there that feel the same way  you are lashing out.    

Personally, I think it stems from the general public's  idea of cancer.   We get it from the news, celebrities that have had it,  and had passed from it.   What  the public hears is - " she put up a great fight ", " she was always so positive" (little did they know how much she really cried)    and all the other nonsensical crap that goes along with how the general public doesn't see what we all go through on a daily basis,  they just see that we either won or lost.  In either case the fight must have been terrible.    She fought the good fight.   WTF is a good fight?!?!    I hope and pray that your sister changes her attitude toward cancer and you as it is her attitude not yours that needs to change!

Eden -

Here is my story in a nutshell: My DCIS was found by a mammogram. I was 49 and had insurance. I had 3 different doctors that recommended a mastectomy of my left breast. I had the mastectomy and did not get reconstruction because it did not appeal to me. I went on an anti-depressant which helped somewhat but I believed that I had done the right thing and sacrificed my breast to save my life. I continued to have yearly mammograms on my remaining breast. I had a scare 2 years later and 4 years later the docs found IDC in my left breast. I could have had a lumpectomy but decided that I couldn't take the stress anymore and had the second mastectomy. The second time, I had some healing issues (seroma) and I started doing research and decided to change my lifestyle and go vegan. I started reading everything and (in my mind) decided that I had made the wrong choice in my treatment. This mindset put me in a downward spiral which caused my world to go black. I never before understood how people could commit suicide but it became very clear to me. I never tried to do it but I wanted to. I was in that bad of shape and it took me 4 years to see the light again. I am well now but if I could go back in time, I would never have a mammogram and I would be whole. (Reconstruction would not make me happy.)

I am no doctor and I don't know if the DCIS will turn invasive and ultimately kill you but I know the depression almost killed me. We can all give you advise and listen to you vent but you are the one that has to live with your decisions. Think it through very carefully because once it is done, there is no turning back. I know that I have a very different view than most of the women on this board but it is my view. My first surgery was in 2004 and my second was in 2008 and my regrets have not gone away. Breast cancer kills but it is also over treated. Suicide kills too. Don't let yourself get pushed into something that you don't want to do.

"I first questioned the notion of MX for DCIS because Eden seemed
terribly concerned about the loss of her breasts and her chances for
finding love...she WANTS them, at her stage in life, and with her
particular emotional needs."  flannelette

"But to get a mastectomy because of medical coverage, not for a medical
reason.....well, I would ask questions. And DCIS can be many things, so I
would want those issues settled in my mind before surgery. If only to
go into surgery less stressed. And yes, the doctor may have many good
reasons for recommending it. But those reasons should be known to the
patient, and then the patient can feel more assured that they are doing
the right thing for their health." Solen

"Don't let yourself get pushed into something that you don't want to do."  Baywatcher

EXACTLY!

I know that sometimes a MX is necessary for DCIS. I get that. I had to have a MX because I had extensive DCIS - over 7cm in a breast the same size as Eden's. But knowing that I didn't want to have the MX, my surgeon was willing to try a lumpectomy first, if that was what I really wanted.  Of course in the end my surgeon would have insisted that I have the surgery that was medically required (which in my case would have meant moving on to the MX because the lumpectomy would not have been successful at delivering clear margins) but I had a surgeon who was willing to discuss the options and work with me to find the approach that was best for me. Sometimes it takes a few steps to get to where you have to go.  My surgeon understood this.  I think Eden deserves the same courtesy from her doctors. And in her case, maybe it would turn out that a lumpectomy can be successful - no one here knows whether this might be the case or not. 

DCIS is not an urgent situation. And DCIS is made up of many very
different diagnoses. Sometimes a lumpectomy alone is sufficient. Most
often the surgical treatment is a lumpectomy + rads. Sometimes a MX is
necessary. And sometimes a MX + rads is recommended. None of us are
doctors and none of us know the exact details of Eden's diagnosis, but
as she has explained it, it appears she may have options other than the
MX.  It's certainly worth discussing, isn't it?

And then there is the issue of the BMX.  While there are cases, like mine, where an MX is medically necessary due to widespread DCIS, a BMX is never medically required for DCIS unless the patient also happens to have DCIS or another breast cancer in the other breast. Sometimes a BMX is a wise choice, due to one's high risk level to be diagnosed again.  Sometimes a BMX is a personal choice, either for physical reasons (a desire to be flat on both sides, for example) or to provide peace of mind.  But unless someone has extensive breast cancer in both breasts, a BMX is never a medical necessity.  So no one should ever be forced into having a BMX (again, unless they have extensive BC in both breasts).  And no one should ever go into a BMX thinking that it's something that they should do, because it's always a choice.

So if Eden doesn't want to have a BMX, and if the idea of having a BMX is causing her extreme emotional pain and distress to the point of possibly being suicidal, then I think it's valid to question some of the assumptions that went into the decision and to suggest that she take a step back and look at other options. No one is suggesting anything more than that. Of course she has to work this through with her doctors - no one here is offering medical advice; we are merely suggesting options that might be available and that can be discussed with her doctors.  Maybe in the end Eden will end up exactly where she is now, with the same surgery planned.  But hopefully then she will feel better about the choices she's made.  Or maybe she'll decide that she'd rather not jump in with both feet (or both breasts!) right away.  And that's okay too. 

Everyone posting here is concerned about Eden and everyone wants to help.  Some can offer personal advice about undergoing severe emotional distress. Some can suggest how deal with the medical and Medicaid system. Some can offer advice about DCIS treatment options. Some can share their experiences from having been in the same situation that Eden faces today. I would never make suggestions about what to do with Medicaid because I'm in Canada and I have no experience with Medicaid.  By the same token, if you don't have a good understanding of DCIS, or if you haven't had a MX or BMX, or more to the point if you haven't had a MX or BMX thrust upon you (which is a completely different mindset than choosing to have or wanting to have a BMX), then it may be harder for you to appreciate some of the advice coming from those of us who have been in those shoes.

Eden, I hope that you are doing better today.  Hopefully you have found a counsellor to talk to about your concerns, and maybe you've given some thought to having more discussions with your surgeon about your different options.  In the end, you have to do what you feel is best for you.  I don't know what that is - only you can know that - but I do know that in your posts yesterday, you clearly weren't comfortable yet with the surgery plan that had been made for you. I was in your shoes once, and it took a few discussions with a few doctors before I came to know what was right for me.  Good luck working that through.  And lots of (((Hugs))).

Eden - another thing to remember is that cancer has often laid hidden for years so taking a couple of weeks or even a month to make decisions that are right for you will not affect your prognosis unless you are being told its inflammatory breast cancer (and it does not sound like that) .

I had an MX and really struggled with it, seriously so, but the actual surgery itself was no big deal, the worst for me was the nodes being removed.........but that is unlikely for you if you are only DCIS...........

Please take time and trust yourself to know what you need minute to minute, and don´t be rushed into making permanent decisions over MEdicaid type issues.....I am not in the US but my understanding is that women with breast cancer have special coverage........

Last christmas I was in the pits too, but life did get better for me over the year, I am now struggling again due to a failed recon.......but I do not feel as bleak as I did then.......I remember thinking I would beat cancer by killing myself to outwit it!!!  Talk about stressed thinking......

Take care....

Hi Eden - I'm glad to hear from you. I think your breast surgeon could prescribe some antianxiety meds. I don't think it is that uncommon for them to do it.  Also - when I was in the pit I tried a paid psychologist, which didn't really work for me, and then I was assigned a Stephen Minister from our church. Many denominations have SMs. You don't have to be a member of the church to be assigned a SM. You meet with them one on one for about an hour a week. They are not professionals, but instead they are trained lay leaders whose only job is to meet you where you are in whatever life struggle you are going through and listen. My SM session was the one safe hour a week when I was struggling. They are not preachy, they don't try to convert you. They are available to anyone and there is no charge. My SM happened to be a cancer social worker in "real life". She saved me. Here is information about the program http://www.stephenministries.org/stephenministry/default.cfm/1597.  I'd be willing to bet there are several available in your area. I could find a church that offers a program if you would like. Hang in there.

http://breastoration.org/wp/about-us/

Edenneworleans- Try contacting the above organization and see if they can offer help.  I think these people are specifically trying to help women in the New Orleans area seeking breast reconstruction. 

Eden, I agree with the comments about  the normality of your feelings and also urge you to take it one day at a time. The holidays are particularly stressful. Try to avoid potentially stressful social situations. The Buddhist view on suffering is actually that it is simply part of life; in fact, they disagree with our futile efforts to avoid at all cost. Try to channel your fears into action. Get informed and postpone the surgery if you need more time, at your stage that is a safe approach. I chose a double mastectomy nearly 5 years ago because I could not perpetuate the screening anxiety and I don't regret my decision. A double mastectomy might not be necessary in your situation but you are right, without insurance you might not receive coverage for a medically unnecessary mastectomy in the future. You should qualify for free or reduced cost mammograms, but since MRIs  are not the standard of care to monitor the opposite breast, those could prove challenging. There must be a social worker who works with your recommended surgeon. A social worker can clarify your financial options (present and future) and put you in contact with a counselor in your area. There are no easy answers, there are only informed decisions. Remember, this too shall pass.

i dont understand the US system but I think you need to squeeze everything you can out of it until you know what you are doing is right for you even if you dont like it.......remember YOU MATTER 

Eden, 

How are you doing?

Hi Eden,

I too was going to suggest you contact Breastoration

http://breastoration.org/wp/about-us/

as BESA suggested. Both Besa and I travelled to NOLA for surgery and many women and doctors in the area (and across the country) have raised funds to help women without money get proper surgical options. And also contact the Center for Restorative Breast Surgery in New Orleans. www.breastcenter.com

 They work closely with Breastoration.

I completely understand the suggestion of MX if you are small breasted. If a lumpectomy would leave you with a deformity, then a MX is a better choice. I also know of a woman who had a scattered DCIS and the only option was MX. Eden, I know it all seems horrible right now, especially with your support system fried, but this is by far the worst time during this process. I also understand the fear of being single and wondering what the future holds. You have to believe that it WILL all work out. DCIS is a very early cancer diagnosis, so you have time to get all your ducks in a row. First and foremost you need to address your mental health. Get your support system back in place... and start looking into options (financially/surgically). Perhaps postponing your surgery is a good idea at this time. 

The other thing is, it is not uncommon to have the lumpecotomy to get the mass out and then research the MX. If you have a lumpectomy, you then have to recover for about a month anyway. Perhaps you can double check with Medicaid, but I would be surprised if this were a problem.