Need some advice

twosenuf99 · 09-20-2011, 05:43 PM

This is the only support group I have joined since my diagnosis.. I find myself needing some advice from the women who have come before me that has survived this horrible disease..

When I was initially diagnosed I had the attitude "it is what it is" but as the last few months have progressed with doctors appointments, tests, and treatments I have grown very very angry and depressed. When I was told my only option was a mastectomy it felt like someone punched me in the stomach. No offense to anyone but I have always hated the "fake" boobs and now that I am in this position I can not seem to change my mind. I know for survival for my children a mastectomy with reconstruction is the only choice I can make but it does not make this any easier to swallow..

I have always been a blah, pessimistic person. Now as I am less than 2 weeks from surgery I find myself crying more and more. II can not seem to look at this as yes I will lose my breasts but I will be alive. I even asked my surgeon what the chances of recurrence without surgery would be. (90%).Since I have 11 year old twins I can not take the chance but I am not sure I will ever survive this ordeal mentally. I have already begun pushing friends and family away because I feel as though I am turning into a freak after surgery.

I know there are many of you out here who have gone through the same things I am going through and maybe more and I know this is something I just have to suck up and deal with but I need to know how others have gotten past the anger and depression.. At this moment I am not sure I ever will..

Sorry this is so lengthy and really nothing but me blabbering.. My thoughts are with all of you everyday.

Hugs
Tracy

NEDenise · 09-20-2011, 06:14 PM

Tracy,
I'm so sorry to hear that you are having such a tough time. I know from my own experience...my chemo began in April '11...that I needed medicine to help me cope with all the changes in my life. It sounds to me...a layperson, who's going through a similar situation...like it might be a good idea to discuss a short term course of anti-depressants with your onc, or primary doc.

I'm wondering...what type of reconstruction are you having. I felt sort of the same way about "fake boobs" as you put it. I'm having surgery at the Univ. of Pennsylvania, on Oct 7, called a DIEP flap. They'll take the fat and blood vessels from my tummy, and make new, cancer-free breasts for me. And the side benefit is that I get a tummy tuck too! I'm hoping they won't feel "fake" to me at all, since they're made from my own tissue.

I know, not all surgeons do the procedure, but Mullica Hill is probably closer to Penn than my house is, and I think every minute of my drive is worth it! If you want a second opinion...give them a call! 215-615-5858 I recommend them highly, so far. I'll let you know for sure after the 7th!

Whatever you choose, you will NOT be a freak. That's the fear talking! Your friends and family love YOU...breasts...no breasts..."fake breasts"...they don't care about that!!

Good luck! Be strong for your kids!
All the best!
Denise

Raquel · 09-20-2011, 06:48 PM

I have gone through similar feelings about my new body shape, I was not able tohave reconstruction and I chose not to wear the flasies either.I think we are our worst critics, I recentl had another friend who had bilaterals too tell me that she can't tell that I don't have boobs! It meant alot coming from a fellow flat chested freind and I think peolpe just notice that I look thinner without them! so whatever you chose will just take some time to get used to, don't overthink how you think you will look, just be thankful to be healthy! It took me about a year to realize that's not the first thing people notice about me.

NanaJoni · 09-20-2011, 07:13 PM

Tracy - it's a terrible trauma to have part of your body amputated and that's what mastectomy is-but it's not like we've lost an arm or leg. I chose a bi-lateral which turned out to be a really good decision. I also chose not to have reconstruction at the time of my mx. Several months later I felt differently and decided to explore my options for reconstruction. Then I threw 3 pulmonary embolisms (or emboli??) and now am not a candidate for any elective surgery. I won't lie to you - some days when I look in the mirror, I feel a little like a freak. Even at the ripe old age of 62, I really miss having breasts and the prostheses just feel like a heavy harness. But then I hear my grandchildren laugh, see my husband smile at me, feel the fall breeze on my face and I am so grateful to be alive. I know the bad feelings will continue to resurface from time to time no matter how hard I try to keep them locked away but we all have bad times even before we were cancer patients. I highly recommend that you find a good therapist who can help you deal with all you are going through. There are wonderful professionals who can really make a difference. Anti-depressants and anxiety medications are very helpful, too, but the therapy can give you the tools that will make a difference in the future.

Pray · 09-20-2011, 08:30 PM

Hi Tracy,

I was mad the first year! Then I finally accepted my onc. many offers to take an anti dep. When I do look back which isn't very often now, all I see is how I wasted so much time with family friends, churh and God knows how sorry I am for not accepting all the Help. I hope you know how important support and help are. Feel free to check in with me anytime! Gods blessings to you and your family.

Debbie L. · 09-20-2011, 09:15 PM

Tracy, do not ever be sorry for "lengthy" here. This is the PLACE for lengthy -- because we hear you and (to varying degrees) we understand you.

Sometimes it can be enough -- just to be able to say what you feel and what you fear -- to those who hear you, understand you, and send empathy -- with love.

Sometimes, answers or advice are not at all what we want or need. We simply want and need to be heard, by those who understand with their hearts. This is the place for that. Blather lengthily! That's what this forum is for. Our hearts and ears stand by, to hear and to understand.

chekmark · 09-21-2011, 04:38 AM

Tracy,
I understand exactly how you are feeling. When I lost my hair on top of loosing a breast I would refer to myself as a freak show. My husband would get so frustrated when I would say that but that is exactly how I felt. I did not mind the looks but the people that would stare would just infuriate me and I would have to bite my tongue. Now that my hair is growing back and I have reconstruction scheduled for Dec. 9th I feel somewhat better but I still go to that dark place once in awhile. Some people cope very well with their mastectomies and others not so well. We are all different.I always said when I was growing up that if I ever got breast cancer I would not hesitate to have a mastectomy and then it happened and I have different feelings. Not that I regret getting rid of the cancer but a piece of my body is missing and I hate it. We just learn to live with the hand that has been dealt to us and try to move on. It has been almost a year since this all started for me and I still struggle so what you are feeling is normal. Family support is important so I hope that gets resolved for you. One day at a time, one foot in front of the other. Stay strong and one day this will all be over and you will hopefully say, that wasn't so bad. I only know a few people that have had reconstruction and they look good and wear whatever they want. The only people that know they had reconstruction is that person and their families. No one else notices. Take care and good luck. Blessings, Darlene

snolan · 09-21-2011, 07:08 AM

Tracy;
I am 1 year out from my mastectomy and have reconstruction sched for Dec. As many have stated this whole experience is a rollercoster of emotions, this is only one stage of it but you came to the right place to vent, the more you talk about it and get your feelings out the better you will be able to cope. Soon you will be venting over not having appointments and having to put all this behind you. Stay strong and know we are all here to help you in any way we can.
Suzanne

Jackie07 · 09-21-2011, 07:21 AM

One of our members have the quotation on her signature:

http://www.youtube.com/watch?v=9tRepZdoRmY

tricia keegan · 09-21-2011, 12:53 PM

Tracy,

I have no personal advice to offer as I had a lumpectomy but wanted to send you good wishes and ((((hugs))) and hope you get your head around this and can accept it. At least you'll be alive for your children and this op really does'nt make you a freak, I'm sure your other half can see the beauty within you even if you feel otherwise so please know you're more than your breasts. I know thats easy for me to say but I'd feel the same way if I were having this surgery, its worth it to save your life!!! xx

stefanie s · 09-29-2011, 12:16 PM

twosenuf99 -

Keep your head up. I know that you have a lot going around in your head while going through your breast cancer treatment. As for the implants, if you are against it do not change your mind. Also, do not think of yourself as disfigured, but think of it as healed. What matters the most, your twins, will not see you that way. They will see you still as mom and love you unconditionally. You are doing all this for yourself and your family, just know that. Also, you came to the right place to vent. That is what these forums are for. As for curbing your anger and depression, different things work for different people. My best advice would be to find an activity to help take your mind off it as a getaway.

Good luck, and please keep us posted. I am new here as well and trying to be a sponge with all the info.

Cam · 09-29-2011, 01:02 PM

Hey Tracy, sorry you are going thru the sadness. It's almost a year for me and I am still 4 infusions and one surgery to go. At first we are shocked at the diagnois, then the recomendations, then we make a plan. A few months after our "plan" we realize what exactly we are going thru. My advice to you is to cry when you feel like crying. I find myself crying at all the wrong times along with all the right times. We try to be brave for our families and friends, but we are the ones going thru it and its time to think about "me/us" now. The thought of what has happened to our bodies make me quiver, but I've been told that after time it will just be something we went thru. Everyone in life has something. Whether it be a physical or mental problem, everyone has something to carry in life. We have to try to go thru it the best way we can. So cry now and soon you will have new boobies to smile about. Just think, no need to wear a bra anymore!!! Have faith.

CoolBreeze · 09-29-2011, 02:36 PM

Hi Tracy,

I think cancer does bring out your natural tendencies; whether pessimistic or optimistic.

Tracy, here is my mastectomy story: I had beautiful breasts. Beautiful. Somebody once offered me $500.00 just for a look and they said my boyfriend could be there - just wanted a glance. (I didn't take him up on it.) I stopped traffic with my breasts.

As I aged, my breasts didn't. Dorian Gray breasts, I called them. I was very very lucky - everybody has one good physical feature, and my breasts were mine. My face is blah, my arms and legs are sticks, but my breast/waist/hip ratio was perfect. And, I too hate fake boobs.

I fought very hard for a lumpectomy, but there was too much cancer. So, I opted for a uni because I wanted to keep one - why cut off a healthy breast?

I thought I would be devastated, since I was so dependent on that one feature to feel beautiful.

But, as it turns out, I wasn't.

Once the surgery was done and the hard part of looking the first time was over, I found it didn't bother me at all. Not even the smallest bit. I didn't get a perfect reconstruction either, and that doesn't matter. I look normal in clothes and that is good enough for me. I don't look at myself in horror in the mirror. It's still my body, just different.

I wish I could tell you why the angst fell away. I guess I realized I had no choice, I had more things to live for than my breasts.

That sadly, was driven home for me, big time, with a stage IV diagnosis 18 months after the mastectomy. Breasts? Bah! Who cares - you will get to see your kids graduate from high school, go to college, get married - weddings, grandchildren. Those are the things that matter.

Being a pessimistic sort, you may have to work at gaining that attitude. If the surgery is over, you are recovered, and you still feel that way, try some positive affirmations. Put encouraging statements on your bathroom mirror, where you can see them regularly. "We are not our bodies - we are our families" stuff like that.

Make it the "lesson of cancer" to try to cultivate an optimistic attitude a little more often.

I find that people who are self-conscious about their new bodies seem to think people are sneaking glances or noticing. I have never once noticed that, and I tell a lot of people I have had a mastectomy, I'm quite public about it. If you see somebody glance down, I interpret as a normal glance down. You might interpret it as somebody "trying to see." You will be more self conscious with a pessimistic mindset. So, be aware of that. I have found that most people don't think about you near as much as we think they do.

Keep all that in mind as you recover.

And, know you aren't alone, most of us have faced fear and worry about mastectomy and what it will do to our image of ourselves. I certainly did and was surprised at my "it doesn't matter" attitude. If you are one of the many who finds that their image is changed, than you need to work to overcome that. You really are the same wonderful wife and mother you always have been, and it's important to focus on that.

You are way ahead of the game knowing what your difficulty may be, and I have every confidence you will overcome it.

Good luck to you and big hugs.

rhondalea · 09-29-2011, 03:41 PM

Ann, your face is not "blah."

(Couldn't let that pass. I've followed your blog and your posts elsewhere since I was diagnosed, and your face is very pretty, has good bones and is expressive of your personality. Definitely not blah.)

This part is for Tracy:

When my doctor found the lump, I made an instant decision, and when I saw the breast surgeon for the first time, I said, "If it's cancer, I want them <pointing to each breast> OFF!" <slashing hand downward like a guillotine>

When I had the excisional biopsy (after the core needle came back negative), I was initially fearful that I would be stuck with it (because I really didn't want radiation), but the margins weren't clear. At the follow-up appointment, my surgeon was in the middle of offering another lumpectomy, and I interrupted her, "Both. Off."

Turns out it was the right decision for me, because I had ADH in the other breast, as well as additional DCIS and LH in the cancerous breast.

At the outset, I wanted TRAM flap, but when I actually considered the loss of abdominal muscles I'd worked really hard for (all that time in plank position down the tubes), not to mention the additional surgery/recovery time, I called the plastic surgeon, cancelled my consultation and was then assigned a surgery slot for the following week.

I have not had a single moment of regret about my decision (well, maybe a little when I was dealing with drains, but that didn't last long). I do not miss my breasts (although I could've happily lived my whole life without the diagnosis that led to giving them up). I do not own a prosthesis, and my relief at not having to deal with bra straps anymore is nearly profound.

To the extent that it is possible to know (all the scans came back clean), I have the comfort of being cancer-free, and that's worth ever so much more to me than my missing bounce.

Our breasts are a part of us, it's true, but we are not our breasts. Women got the soft bodies because we're so inherently strong and tough underneath it all. Your grief is normal (as my lack thereof is not), and you are entitled to honor it for as long as you need to. As time passes, though, it will likely seem a small sacrifice for all the good in your life that you get to keep.

Rhonda

P.S. Your choice of avatar indicates that your personality is no more "blah" than Ann's face, so don't sell yourself short.

norkdo · 09-30-2011, 08:15 AM

Tracy
I am a negative, pessimistic, anti-depressant-popping writer and former English teacher, current (not working cos of the treatment) dog walker/trainer.
I have different advice for you, therefore, than all the well-adjusted folk above!!!
Here is my advice:
Go into the dark side.
More.
Stop apologizing for your behaviour if you are doing that.

Even Jesus had his screaming fit in the temple. God knows how long it lasted. Could have been months or years right?

Tell strangers who do casual brutalities to you (nurses, hospital employees etc) EXACTLY what they are doing to you, and describe to them the consequences of their actions on you emotionally.

Cancer is your moment. It has been mine.

Finally, the pollyannas who tell you to get therapy (what, with some twenty-five year old psych grad right out of Privilege School who has no wisdom, but treats you as per some model in a psych book written by some self aggrandizing egomaniac?) are well meaning but not necessarily right.

No. I still take a base dose (should increase it, eh? lol) of antidepressants.

But now when the "rain" starts to fall, I burst out in angry tears and to hell with people who don't like it.

(because some airhead idiot screwed up a message from my oncologist and added hours of my phoning the hospital to only get lost in a never-ending phone-tree maze, trying to find out if I should just show up or do I need to get an appointment again, or whatever),

or when the "couldn't give a crap I have a great salary and a union" chemo nurse forgets to phone the pharmacy to deliver my drugs, thereby adding two hours to my five hour herceptin/taxotere infusion last friday.....

I really tell people exactly what I think of them.

I let the world wait.

I let the embarrassment factor go to hell.

I tell people whose idiocy, incompetence, smugness, and ridiculousness have cost me time, patience, or any other negative emotion.

I no longer protect the weak from my temper.

I no longer give a crap about "reforming" my incalcitrant temper.

I am no longer in the business of keeping the crap part of the world free of knowing its effect on me and others.
I have cancer. You have cancer.

Nothing about cancer gets better. Until you finish treatment, reconstruction, etc. and a year has gone by and no disease has spread further, the news is always somehow getting worse. But HER2 means you add a whole year to that schedule for herceptin. Ugly is years long.

I recognized myself in your description of yourself early on when you got the news as "whatever". I too had that feeling.

Let your rage shine, girl.

Don't try to stifle it.

Don't try to stuff it up, medicate it, fix it, therapize it with some young idiot telling you stuff you already know, and then asking you for $150 for that pap. (as i did.)

Shout it from the rooftops, honey: I have the worst frickin thing a woman could have: the heart of my beauty, the intimate part of my sex life, the most delicate relationship I ever had was with my breasts. Now they are butchered. My chest is a war zone of port installation, ugly lumps around my incision, I will never have back the beauty and intimacy that I had because of my breasts. I was a beautiful girl! I had gorgeous, sensitive boobs, and huge, huge hair! I am now an ugly, fattish, bald crone out of Macbeth!
All is lost.
All is crap.
Nobody cares because they have all found answers for themselves. They think their answers are mine. They are nice to offer that advice cos they think it will help.
Maybe one day it will.
But I am looking to install a punching bag on the curb outside my house so I can draw police attention to the one- breasted, bald, screaming, shouting, angry 51 year old woman punching away at the unfairness of it all.
That is how I feel.
Let the cops come about the noise you create.
Let people try to shut you up.
But don't stop screaming, girl.
Do not stop.
If you decide to, that is your business.
But you don't have to. Just shout. Just cry. Just spill those angry tears til you no longer need to. And then get up next day and start over, hon.
You deserve it.

CoolBreeze · 09-30-2011, 09:33 AM

Wow, Nora, that is quite a post. I honor your feelings on this subject and I suppose your way of dealing with it has served you well. You do write beautifully.

I've never been one to care what people think of me - I'm bossy and pushy and strong-minded and those who can't handle it, well, I consider that their problem. But I also don't believe in taking my pain and suffering out on others so I'm puzzled at your rage. But, I guess whatever gets you through the days.

Somebody here has this in their sig and I really related to it, ""If you knew that hope and despair were paths to the same destination, which would you choose?" ~Robert Brault

Some people choose hope, and some choose despair, and I think you and I demonstrate the two paths quite well.

The point is, we all do have a choice. How we react to this is entirely within our choosing and whatever can get you through is what you should do. Yes, anger, depression, frustration is a normal part of this experience and is a normal part of life. But, at some point, it shouldn't be all-consuming.

I might not live very long - hell, I might be dead by Tuesday. I don't want to go with feelings of anger and hate in my heart.

norkdo · 09-30-2011, 09:37 AM

I appreciate that. Thx so much for props on the writing.
re: rage...I only take it out on those who cause it. but i admit it ain't pretty for friends who took me to the hospital friday...but Mike is a guy TERRIFIED of anger. He is a pretty extreme case, though. He has gotten in trouble for his anger in the past so he goes crazy at my anger at the hospital jerks. I do separate the two phenomena though. He is excessively afraid of anger in others cos he is afraid of it in himself. He goes hard on me for my rages at hospital idiots. It won't stop til they stop. Why can't a hospital secretary simply phone someone and say "just come in! the doctor has extra help today!" instead she said "the doctor would like you to come in earlier and did not leave her name or extension. i had to spend hours phoning around trying to find out what she meant...do i get a new earlier appt? no name, no extension...hours of mine wasted when i just could have come in.
You tell me to drop it. no. I don't think so.
This girl cost all the cancer patients hours of their lives that morning in frustration. she said to me when i got there "oh i had fifty calls to return." I said "well forty of them were from me. You could have avoided ANY incoming follow up phone calls at all. You could have just said "the doctor says 'just come in'...no appt necessary." why didn't u?

No. I am a rage machine now. No way I am gonna slow it down. When these idiots stop being idiots perhaps. Or when I tire of letting them know the personal cost of their idiocy.

I only rage on whomever deserves it.

CoolBreeze · 09-30-2011, 09:50 AM

Who caused your cancer?

sarah · 09-30-2011, 09:51 AM

Hello Two's enough,
If the reconstruction is done with part of your body - there are different places and methods - Diep, tram, some from the back, some stomach, I'm not up to date on it all but the results feel totally natural. Ask at your hospital or at your surgeon's if someone's had this type of reconstruction and meet with them to talk about it and maybe touch their breast - you'll be peasantly surprised. ok the nipple will be different but the feel of the breast will be identical to your other one.
I think you're probably focusing on the breast questions because you're scared about cancer and it's easier to think about this than face the scary idea of cancer. Just remember that breast cancer is probably the best understood and researched cancer anyone could have.
Watch some funny movies with your kids and realize you're going to live, yes the journey will be hard but you're not alone and you will get through it and live to see those kids have kids of their own.
Hugs and love
Sarah

norkdo · 09-30-2011, 10:32 AM

well i guess i do have to speak more seriously on the rage, ur right, ann. I feel a sadness about the truthful quote that despair and hope are two paths that run parallel to a conclusion independent of either of them.

It makes me sad this quote. The meaningless of a quiet life with breast cancer. I feel I need a feedback loop to warn women about breast cancer. To warn them that all their breast checks, mammos, good eating, etc. are doing almost nothing. nobody with the power to choose how the billions donated to breast cancer are allocated is responsible to us. They can make up all the so called Prevention posters they want. Full of meaningless tripe. It is just not right to my mind.

http://her2support.org/vbulletin/showthread.php?t=51572

I'm supposed to quietly get well, it feels to me, or to quietly die. (I say this because this is Breast Cancer Awareness Month and the standard "how to prevent Breast Cancer" advice is still being trotted out despite the fact that it is not true...see the threads on this). I don't want to be quiet. I want to scream.

How do I get some of that communication power? Yes, I can write letters, bla bla...but i believe it starts within. I think it starts with saying YES to my feelings. Yes to rage. Yes to making those in power hear me. We are fifty percent of the population!!! Were we gay men we would have twice the self respect! Think of how angry the gay men got. And yes, Aids is now in a much better place than Breast Cancer.

I think it does have to do with the Right to Rage. I really do. There is no doubt that the permission we give ourselves starts a revolution.