LisaAlissa

Hi Ninja,

I'm so sorry that you needed to find the site.  But you've probably discovered that there are a lot of wonderful men & women on this site, so I guess I'm glad you found it when you needed it.

You have, however, made me curious...I thought DCIS was always Stage 0...do you also have another diagnosis? or am I wrong about that? 

Not that that matters.  Hang in there.  And BTW, tell your daughter that a "uni-boob" is that odd looking thing some women choose to have (when they select bras/clothers) that runs straight across w/out a break (kind of like Frieda Kahlos's eyebrows)    You'll undoubtedly look much better than that!  

If you'll forgive me for generalizing on the basis of your single post, but it sounds like you may be a little like me...someone who intellectualizes it all (are you able to stop yourself?).  At any rate, you may have seen many mastectomies...but you haven't seen yours (not that you want to...).   If you can, let yourself be emotional.  Even though I just had a lumpectomy, eventually, I found myself grieving my "loss"... (not sure I can even describe of what--flesh, innocence, trust in my body?) but it was at a very odd time/place.  

So, hang in there... and be kind to yourself.

LisaAlissa 

etc: typo

Hi MME,

I just read through this entire thread and have some questions/ideas for you: 

1.  Commitment? You describe her as your "girlfriend" which can mean anything from "have dated a few times" through "have lived together for years," but since it's not "fiancé" she may think that you are not committed to her for the long term.  Does she think that your relationship is something that is fragile...something that could end easily/quickly?  She may be afraid to "let you in" if she doesn't have confidence that you're committed to her.  That if she relies on you and then she loses you that's one more trauma to deal with in the midst of something very traumatic.

How do you view your future with her?  You asked other members here how their "mates" have dealt w/ their BC diagnosis, so that suggests that you may view her as your mate. If so, does she know that?  Does she share your level of commitment?  (I'm not trying to push you into anything, and I honor your efforts to help her, but this may be part of why she hasn't wanted you at appointments, etc.)

Your say your mother "loves her like a daughter." Does she know that?  Or if she does, perhaps she's afraid that that love would go away if you two split...  Would your mother continue to have that relationship with her if you two weren't together?

2.  Refuge of Normality.  She's spending a lot of time thinking and experiencing the roller-coaster of the emotions that come w/ a cancer diagnosis.  Perhaps she sees the time she spends with you as a respite from all of that.  That could explain why she hasn't wanted to talk about it with you. When you see the counselor, you can explain why you want to know/be involved, but she may be that the thing you can do best to support her is to continue to treat her as you have before.  Those are things you'll need to work out w/ her.  Perhaps unless she brings it up, you'll agree not to ask more often than ______. But that she will give you those periodic updates.    

3.  Not a victim.  No one wants to be the object of pity.  Or viewed as a cancer "victim" (that's one of the reasons why the "survivor" term started to be used, to avoid the "victim" mentality) but I think many people share her desire not to tell anyone about it.  For example, they don't want to be the subject of gossip, don't want pitying looks and hope to be able to keep the details of their health/illness private--just as other details of their health have been private in the past.  She doesn't want this to be different. 

For example, ask herif she's ok w/ you disclosing to your Mom (if she doesn't already know you have).  And if she isn't, tell you Mom you've made a huge faux pas and that you need her to "not know" until you're allowed to tell her.   

4.  Control.  I suspect that a lot of things may be moving awfully quickly, and she wants to keep control.  I know that you care for her...and it's clear that you've been researching her illness.  But you may seem like another element of her life that's moving too fast for her just now.  It may be that she will be pleased to have you doing research.  But she may not want you to be the expert on her illness.  You can volunteer, but if she says "no", you need to let her be the expert on her illness. 

Just some things for you to think about...and perhaps discuss w/ your Mom and/or w/ a counselor. 

HTH,

LisaAlissa

Hi vision4utoo!

I also had similar SE's...although I also had cognitive SEs as well (I couldn't seem to think straight, was easily distracted/couldn't focus and had trouble finding words).  But I persisted w/ the tamoxifen for almost 8 months before I gave it up, all the while seeing a neuropsychologist, neurologist and a psychiatrist to try to "fix" myself. 

Once I stopped taking the tamixifen, it took a 2-3 weeks before I was back to myself.  But there's no question that it can be a major depressant for some of us...and it was such a relief to get myself back!

After I "recovered" from the tamoxifen, my oncologist discussed the various alternatives with me.  I'm now on Evista, even though I'm still pre-menopausal.   I haven't had any difficulties with it.

I hope you're back to yourself very soon!  (If you want to discuss further, please PM me.)

LisaAlissa

Barry,

You say:

"If it's stage 0 then it's nothing. Zero means nothing...I know what the medical establishment says...but it still bothers me. Sorry to pain you all with my thoughts on this, but I don't get it."

I don't know if this will help or not...but I think you're focusing on the definition of "zero" too much.  From math/arithmetic, "zero" or "0" may mean "nothing."  But that doesn't really apply in looking at Cancer Staging.  Think of "0, I, II, III & IV" as a series of labels for categories of cancers that share a similar prognosis.  They could have chosen "V, W, X, Y, Z."  or "Red, Orange, Yellow, Green, Blue."    Any series of labels could have been used. 

They wouldn't need to describe it at all if it was "benign"...  Unfortuantely, that seems to me to mean that Stage 0 is "something."  Something that isn't as bad as "Stage I", but that isn't benign.  Exactly what it is in your case is presumably what your team from the medical establishment has been describing for you.

BTW, I've often wondered if Stage "0" was a later add-on to the system.  Perhaps the need to use "zero" represents a lack of imagination at the beginning of the 20th century when the staging systems were being developed.  If they later needed to add something before "I", "0" would be the only (or at least most obvious) choice available.  Note that this paragraph is merely speculation on my part...but I've certainly wondered...

I don't know if any of this will help you, Barry, but I hope that it might.

LisaAlissa 

ETC: "W" to "Y"

Hi goophy58!

I'm so sorry that you're having to deal with this.  I'm not the right person to help you with this, but I think you might get a better response if you post your question as a new thread in the "Just Diagnosed" forum here:

 http://community.breastcancer.org/forum/5

Call if something like "Do I need chemo? 2 docs, 2 opinions...help!"  and I think you'll be more likely to get the help you're looking for.

Hang in there!

LisaAlissa

Bridget said: "My husband and everyone else says get a houscleaner to come in once a week yeah sure that would work if she could find the floors bathroom etc. That I spend hours everyday picking up!! It would stress me more! " 

Bridget,

When I read that, I immediately thought of a story my sister told me about an arrangement my B-i-L made with his housecleaner.  He temporarily had a college-age kid of a friend living in his house for the semester.  The kid was a slob, so the B-i-L made a deal w/ the housecleaner.  If there were things on the floor (or on some surface she needed to get to) she agreed to put them all in a box (no folding, neatly stacking, just in the box), and deposit the box in the garage.  It didn't take long before the kid was picking up after himself so that he wouldn't have to try to live out of that box in the garage.

Maybe you could hire a housecleaner and use some version of a similar scheme? The cleaner would have to agree to cooperate, but that could be one of the terms of employment.  Take your husband up on the "hire a housecleaner" suggestion, but with this little addition--and it's only fair that your family knows that is how it will work. 

That way you wouldn't be spending your time cleaning up after everyone in advance of the cleaning person's arrival.  And maybe your various family members would begin to take care of themselves, instead of thinking that you will have the energy to do it for them.  BTW, although I haven't had to try something similar (since I live alone) you'll have to be prepared not to dig for what they need in the various garage boxes.  You'll have to be willing to let them flounder a bit.

HTH (and hang in there),

LisaAlissa

Here's a link to a post from an admin on another board, with (I think) good advice on what to do if a board is "invaded:"   http://artisanssquare.com/sg/index.php/topic,178.msg2427.html#msg2427

Note that initial part of the post is directions to any mods who are on duty when it happens. To make "real" topics "sticky" (so that they'll appear at the top of each board--spamming threads will fall to the bottom). Part of the post-spam clean-up is to "unsticky" all of the normal threads.

The second part of the post is what members should (and shouldn't) do in response to an invasion.

Beesie,  you'll note that she suggests that if only members are available, that they should "bump" the real threads until mods/admins can deal with the situation.  I note that if members use the designated "word" or "words" ("post" or "bump" or whatever) that it is then easy to search for those posts...and that it is equally easy to delete them when the excitement is all over. 

On a board I moderate, we can completely delete posts (so that the sort of "shell" of a message that appears above where nck777 deleted their post doesn't remain).  I don't know if it is similarly easy for mods/admins to delete entire posts (not just the content), here.  If they can, then the search/delete for bumped posts (as a part of the spam clean-up), will leave the "new posts" links working properly again.

HTH,

LisaAlissa

Hi SaraJane!

I'm so sorry that you're having to deal with this...

Stages & Grades are two different things.  Your surgeon is right.  DCIS is Stage 0.  However within that, the your DCIS can be low grade (aka "Grade I"), moderate grade (aka "Grade II") or high grade (aka "Grade III").  (You don't want to be "high grade" here.) 

You can read more about these classifications here:

http://www.breastcancer.org/symptoms/dcis/type_grade.jsp

and you'll also see links (at the bottom-left of that page) to more info on how that info gets used by your medical team as they're planning your treatment.  BTW, the info about the grade of your DCIS is something that should be able to find on your pathology report. 

Sorry that your surgeon didn't understand what you were asking... 

at any rate, HTH,

LisaAlissa

Hi ginnysue!

I'm so sorry that you may not be having the treatment you had originally selected with your doctors.  (It sounds like you won't know until tomorrow after your PET/CT.)  It can be so unsettling when things look like they're going to change.  You can't change your body or what the tests will show about it. 

All you can do is try to think about it a little bit differently.  Perhaps focusing on how good it is that your medical team is being so careful of you.  Even after a decision has been made, they continue to monitor that decision so that changes can be made if needed.  And if you have to do the 6-8 week treatment, you can do it.  It just takes longer.  But you'll be able to be confident that you and your team have selected the best treatment option for you.   

Hang in there, be kind to yourself and find a time/place where you can let yourself be scared and be comforted.  If that's not w/ your family, try a support group, counselor or clergyperson.  Check w/ your cancer center...many have social workers/counselors/psychologists on staff, who moderate support groups.

I hope that tomorrow brings you news that after checking, they can do the Mammosite radiation after all. 

Good luck!

LisaAlissa 

Anne said "Ice packs help, but I can't go around everywhere with ice on my tit."

Why not?  I used small flat ice packs that fit inside my bra for several weeks after surgery--including at work.  I simply has a ziplock-type freezer bag w/ extras in the refrigerator at the office, and switched them at breaks/lunch. 

While I wasn't dealing w/ nerve pain, if cold helps, I don't know why you shouldn't use it!  (just use an overshirt/sweater/jacket to mask any odd contours and no one should notice a thing!)

Best wishes,

LisaAlissa