Getting through the emotions...

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Quilted-ta-tas
Quilted-ta-tas Member Posts: 38

Hello everyone, I am so glad I found this forum. It has helped me immensely as I transitioned from biopsy (Nov. 17th) to diagnosis DCIS grade 2 (Dec. 9th) and finally a lumpectomy (Jan 31st).

I seemed to be doing ok emotionally through all of this, experienced waves of denial, fear, anger, and finally was feeling quite strong and optimistic. My mantra was... it's only DCIS, I can accept this, and I am in control.

But now I'm feeling the blues like never before... I suppose it could be related to that fact that I am still waiting to hear on the pathology report from lumpectomy. It has been six weeks (pathologist shortage). The report is back but my breast surgeon was away and just returned this week.

I guess I had thought I had come to terms with the possible outcomes either more surgery if margins are not clear, or start radiation for 5 weeks in April then all done! My breast surgeon told my husband after surgery that she was 99% sure that margins would be good - not sure how she could know that, mind you she took ALOT of tissue.

It could be that I have not come to terms with the cosmetic result. For a while after surgery it looked really promising but now that the swelling is gone down my ta-ta is not looking very happy. There was alot more tissue taken than what I was prepared for, looks almost like the entire upper right quarter of my right breast is missing. There is a definite indentation, some wrinkly skin, and a 2+ inch scar. Half my breast is numb, though nice that my nipple still has sensation and can look perky. I know I had the best surgeon. She has excellent ratings from other doctors and patients. And I experienced firsthand the benefit of her expertise and gentle bedside manner. Nurses from different hospitals told me it was amazing that I had next to no bruising and the incision site was "beautiful". I did have burning pain, mostly from swelling I think, for a month post-op but good now. Breast surgeon told me not to consider cosmetic result until a year had passed, but I can't see how it could get any better than it is now.

So I have lost all energy and can't seem to fight off what feels like more than a "little depression". It has been over a week like this and I don't feel like doing anything :(   I swing from not caring about anything and just blah, to being totally overwhelmed. And I never know which emotion to expect at any one time.

When I visit someone or go for lunch with a friend I am ok for the time and can cover up pretty good, then when I am alone again I slump back into miserable. I am really trying to stop feeling sorry for myself. I only have to look at the news to see what real grief looks like. But I just can't snap out of this.

Some days I don't even know who I am anymore, it seems that this happened out of no where (routine mammogram) and now time is standing still as I await for further instructions. My husband and I run a cattle and grain operation, we love our way of life, but calving is starting next month, then seeding. So there is a lot of work ahead. And it is hard to plan for anything. I have family coming for a small re-union in July, then my step-son is getting married in August. I wish I could just teleport away from all this.

Did anyone out there get counseling or have anti-depressants going thru this? To tell you the truth I really don't even want to see another doctor OR start a medication but I'm running out of options and just want to smile again for real.

Thank you all for listening.

Comments

  • ppeople
    ppeople Member Posts: 207
    edited March 2012

    Hi Quilted,

    I had a whole eloquant reply typed out, but I am using my damned phone and hit the wrong button and wiped the whole thing out!

    The summary is: therapy is good, gives you emotional freedom and space to process all this. It relieves the pressure of carrying your burden alone and helps you see the situation and yourself more clearly.

    I am a therapist (could you tell?!?) And have benefited from therapy myself. Just find a therapist you connect with and I think it will help.

  • fredntan
    fredntan Member Posts: 1,821
    edited March 2012

    I've cried a thousand tears. your plans are uncertain right now. I finally got on antidepressant in jan? and it has helped a lot.. sure I still cry, but its gotten better. listening to music and forcing myself in the winter to go for walks has helped. I've still got my xanx but I don't need it as much.

    I used to be a farm girl those baby calves are so cute

  • Quilted-ta-tas
    Quilted-ta-tas Member Posts: 38
    edited March 2012

    Thanks for the encouragement plymouth, I actually started looking today to make an appointment. Sometimes the idea of one more commitment, like a weekly counseling meeting, is enough to stop me from doing it but talking is good. I felt so much better after journaling that first post. I just cried. I think that secretly I am also trying to prepare myself for the possibility of a mastectomy. The breast surgeon reminded me that it is still a valid option if a re-excision was needed and I don't have a lot of breast tissue left to work with. Oh boy, I'm 47 and I like my girls, even the quilted looking one. Oh well guess I'll cross that bridge IF I come to it. So nice not to be alone in all this! And yes, don't you hate that when one keystroke can wipe out a few thousand well thought out keystrokes!! Surprised

    And thank you fredntan. I needed a good cry and got just that after posting. Music definitely helps me, scented candles, good chocolate, a glass of wine, and hot baths... I am so into self-comfort mode. Unfortunately the results though are not long lasting. Have lucked out with lots of sunny winter days, and I am forced to go outside 3 times a day now because I have to bottlefeed a calf whose mama didn't have enough milk. It does cheer me up to care for her, her name is Dolly. Hard to believe I used to be a big city girl!Cool

  • Djustme
    Djustme Member Posts: 156
    edited March 2012

    Energy is usually down for several weeks. Your body has just had a major shock. I had a single full mastectomy November 1st and it took about 8 weeks to get my full energy back.  And yes, antidepressants are very common afterward to keep from waking up crying everyday.  Most people cannot come to terms with the situation in one shot. You come to terms a little bit at a time. I was spring cleaning this past weekend so I got out some of my spring clothes. I had a melt down realizing that I cannot wear most of my old tops. But on the plus side of things, fashions this spring include a lot of peasant and other gathered types of tops that promise to make shopping successful.

  • RockiesGal
    RockiesGal Member Posts: 22
    edited March 2012

    I think you are right that part of the reason you are feeling depressed is because you still don't know exactly where you stand.  In fact, I think that might be a very large part of the reason.  Once you have more answers and you can start moving forward, I think you'll feel less depressed.  It is much easier to cope when you can focus on your treatment path rather than being stuck in a holding pattern.

    Personally, I didn't experience depression until the end of my radiation treatments.  I think that was because I had been doing everything I could to fight and suddenly I wasn't doing anything.  I felt like I needed to be actively engaged in the fight.  When I figured that out, I was able to convince myself that I had done everything I could (or at least should) and the depression eased.

    If you find you are still struggling with depression after you get your path report, don't hesitate to get help.  Writing really helps me work through things, even if I'm the only one that ever reads what I wrote (or maybe especially when I'm the only one that reads it).  It sounds like that might be a good outlet for you as well.  This is a good place to do that.

     I hope you get your results very soon, and I hope your margins are huge! 

  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2012

    Quilted- It's a lot to deal with we know.  Like RockiesGal said, a lot of us are too busy with treatments to process everything that has changed for us.  We expect to struggle with emotions in the beginning but it usually hits us when we're all done or close to it.  The dust settles and we think, "What the hell just happened?"  One minute you're cruising through life, not feeling sick, and the next you're looking at incisons waiting for pathology reports.  It's a lot to process and anyone would feel the way you do.  It gets better and it helps to talk about it.  I get the thought that one more committment, like a counseling session, is one too many.  I think if you find a thread you connect with it can be just as effective as any talk therapy.  (And you can show up in your p.j.'s!)  It just helps knowing others get it- they've been there, they understand.  There's a thread I post on where we share more about the emotional stuff and trying to move past cancer but we just chat and connect, too.  We welcome you to come over and post with us.  The title of the thread is called "Great saying about depression".  I'll post a link for you-

    http://community.breastcancer.org/forum/102/topic/759882?page=103#idx_3078 

    As far as the cosmetic results I wanted to make sure you knew about something called fat grafting.  It's kind of new so it may be hard to find someone in your area who does it but it's really effective for filling in lumpectomy defects.  The surgeon removes excess fat through liposuction and uses it to fill in the crevices.  Let me know if you want more information about it.  Just realize if you're truly unhappy with the aftereffects of lumpectomy there are options out there.  It gets better- I promise!

    Wishing you the best of luck with your path report.  (((hugs))) 

  • akmom
    akmom Member Posts: 272
    edited March 2012

    Hi Quilted, I have nothing much to add to the eloquent and thoughtful posts above. Just wanted to say that I feel for you and wish there was an easy fix for the way you are feeling right now. The fact that you are identifying it and facing it is a big plus and is your starting point to move forward.

    In my experience with depression, the thing that helps the most is to keep telling yourself that if you just put one foot in front of the other... just one more step, and then one more after that.... eventually you are going to reach a better place.

    And another suggestion - ask for help!! If planning for the reunion and wedding is overwhelming you, make a task list, keep for yourself the stuff that you would enjoy doing, and see what you can delegate to somebody else.

    Hang in there!

  • Quilted-ta-tas
    Quilted-ta-tas Member Posts: 38
    edited March 2012

    Soooooooo comforting to hear from all you ladies, I cried again but this time it was relief after reading your replies and feeling understood. A million thank you's!!!

    Djustme: It certainly does feel like a major shock and I just keep waiting for the day when I wake up feeling rested again. I know it will come! Sorry to hear about your meltdown with spring cleaning and trying on clothes... I can tell you I have been avoiding the same task for just the same reason. Right now I have to choose wisely what clothes to wear and I always wear my t-shirt bra (you know the kind that is form shaped so that everything looks smooth under a t-shirt) otherwise the girls are noticeably different. I absolutely dread the thought of going shopping for spring/summer clothes (especially the outfit for the August wedding) but thank you for giving me some hope that this year's styles will be kind to us!!

    RockiesGal: Exactly, I feel stuck in a holding pattern. What makes it worse is that the results were in last week, and this is almost Thursday already! That's it, I am making another call to the doctor's office tomorrow. I think it's only fair that I know the results before another weekend begins. Thank you for your bestest wishes!

    Kate33: Yes, everything did happen so quickly! Actually I was supposed to have surgery on Jan. 3rd after getting the diagnosis on Dec. 9th but I came up with a pretty good excuse to postpone the surgery even though the real reason was that I needed time to adjust to the diagnosis first, "what the hell just happened" is right. Thanks for the link to "Great saying about depression" I can relate, I think I have been trying too hard to be strong for me and everyone that I love. I will be sure to come party there in my pj's :)  And thank you for advice about fat grafting, sounds like a win-win solution. I will have to see if I get to keep my breast first and then evaluate what my options are. PS. Great quote in your signature, if I get breast reconstruction I want that tattoo'd underneath :)  Hugs to you too!

    Akmom: That is good wisdom for sure, what happens with me though is that I'm not very patient with myself, I often beat myself up for not getting done what needs to be done and what should have been done. I know I have to be kinder and gentle with myself, I guess I started to help myself today by stopping and making my very first post here at BCO, it has made a difference already. Thank you for your support!

  • gumshoe
    gumshoe Member Posts: 248
    edited March 2012

    Hi - I think we are on a similar timeline with our diagnoses, and I'm feeling similar things. You can read my other posts to see where I am at, but in general, I am learning to put myself first.



    I work in a demanding job that I just don't care about right now. Trust me, if you knew me, you wouldn't believe it! I'm used to working very long hours and now I can start something and not even finish it. I'm very routine-oriented, and this has all thrown me for a loop. I don't "wait" very well. I need a plan that I can follow. I can't imagine having to wait for as long as you have, so I don't blame you for feeling out of sorts.



    Feel free to PM me if you want to talk :)

  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2012

    quilted- I would never, NEVER EVER, say something good has come from BC but let's just say the experience has "tweaked" me a little.  I think a lot of us used to "beat ourselves up for not getting things done".  I've actually learned now to let things go a little, to not feel such a need for perfection and to realize that sometimes I need support, too.  I know coming here was, and is, my therapy and I'm so grateful for this site.  I never felt alone and I felt like so many women had my back as I was dealing with different issues throughout this whole process.  And they have yours, too!  Someone once said this is the club no one wants to join, the hazing is a bitch but the sisterhood is for life.

  • gumshoe
    gumshoe Member Posts: 248
    edited March 2012

    Yes, what Kate22* said:

    [edited: Sorry Kate: I called you "22" instead of Kate33 -- see how my mind wanders?? Smile] 

    I had a very good talk with my GP today about this very thing: working on not feeling guilty for *gasp!* wanting to take a nap, or *gasp!*, wanting to read a book. And learning to say to my family, "No, I don't feel like doing that." My GP has also been through health issues, so he can relate to some extent.

    I know we all have things we must do, but you learn to filter out what isn't absolutely necessary.  

  • lane4
    lane4 Member Posts: 175
    edited March 2012

    Hi, quilted - I can really relate to what you are feeling. I had a partial mastectomy in 2009 and the surgeon took way more tissue than he led me to believe he would take. I couldn't see the difference for the first few weeks because of swelling, I guess. By the time I finished radiation, that breast was a full cup size smaller, although the shape was okay. I was really depressed and felt anger toward the surgeon for taking so much tissue (he did get clean margins) and toward the radiation oncologist for telling me that radiation won't shrink your breast or cause fat necrosis or fibrosis (all of which turned out to be lies). And just anger in general that this had happened in the first place. I had to put on my happy face and go out and pretend I was just fine, yet at home I would cry at the drop of a hat. I've heard that depression is really anger turned inward. My husband begged me to get some help, so after six months of hell, I asked my primary care doctor for an anti-depressant. I felt that seeing a psychologist for talk therapy would not help as much as seeing a plastic surgeon and making a plan to correct the asymmetry. The anti-depressant did help me to stop ruminating so much and to enjoy life again. I ended up having the other breast reduced a year after radiation. Then two years after, I had some scar tissue broken up and fat grafted in where I had developed some radiation damage. I am much closer to being even now, but may have one more round of fat grafting to really fix things.

    Sorry for such a long post, but I just want you to know that most of us here have experienced all of the emotions you are dealing with. I know that when the cosmetic result is not what you hoped for, you feel guilty for being vain. I know I beat myself up because I thought, "I'm supposed to be grateful - that this was just DCIS, that the surgeon got clean margins, etc." But it is hard to accept the reality of what it has done to your mind and body.

    Sending hugs and wishes for clean margins your way. Please keep us informed on how you're doing.

  • Quilted-ta-tas
    Quilted-ta-tas Member Posts: 38
    edited March 2012

    Sorry everyone for taking so long to get back. I had expected to hear from my breast surgeon sooner and then be able to give you a complete update, as it is I still have not heard from her but I do have some news to share and I wanted to reply to you girls.

    My family physician was faxed a copy of my path report from the surgeon's office at my request. The news is that my margins are NOT clear :(   She told me that another "procedure" would be required and apologized saying that it would be best to wait and have the pathology report interpreted by my breast surgeon. So re-excision or a mastectomy, let's hope that I still have a choice.

    Thanks gumshoe, it's great to be able to PM with you! And yes this guilt is hard, we are just not used to putting ourselves first. I saw this on another post somewhere, about putting ourselves first, "...it feels selfish but right now it's essential!"

    Kate33, I sure appreciate your take on this, I too believe that "tweaking" is going on, I know I am starting to grow through this, just too bad that DCIS had to happen to open my eyes a little wider and to ponder a little deeper. Maybe that's why the trivial stuff is all falling to the wayside. I'm just done with it. I see a time of simplifying my whole life because I think that the few things that are the most important, that are near and dear to my heart, are getting crowded out by all the extra "stuff" in my life, and time is being wasted on trying to keep things "perfect". After reading your post I looked around the house and figured yeah, this will do, I am not in clean-up mode one bit and it feels good :)  I will say again how glad I am to have found this forum. It's like a home away from home. Going on this BC journey is kinda like being away from home because nothing is the same anymore, how fortunate to meet all these wonderful sisters along the way!

    Lane4 Please do not apologize for long posts, look at mine!! Or maybe I should start apologizing for mine too :) Oh boy when I read your post, I can relate, the start of your journey was similar to my experience with unmet expectations, roller coaster emotions, and pretending everything is fine. I have overcome the vanity guilt. I truly believe there are deeper attachments to our breasts than just wanting to look good. Exactly like you said, we are supposed to be grateful it is just DCIS, "but it is hard to accept the reality of what it has done to our mind and body." Amen. I am glad that you finally reached out and that the anti-depressants were helpful. For now, my family physician is aware that I am having difficulties, she told me she is ready with paper and pen if I start going downhill again. And YES - good to hear that your girls are almost even again! I guess it does take a little or A LOT of time and patience, there certainly are many different techniques out there to get things back in shape, amazing. I hope to be able to work on getting similar results whenever I finally get clear margins!!! Thank you for your support and I will keep you posted.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2012

    Quilted- I hope it turns out your margins are fine but, if it's not meant to be, all the women here will be here for you through that, too.  I had a similar experience with unclear margins and opted for BMX rather than a re-excision.  If you're faced with the same I'm happy to help you in any way that I can.  I wanted to add that many women with DCIS are excellent candidates for nipple sparing (NS), provided your cancer isn't close to the nipple, and it can be a lot less disfiguring.  That is what I had and can answer most questions you may have.  A word of warning, though, not all BS's are trained in this procedure so if it comes to it make sure your is or have a consult with one who is very experienced.  I also post on a NS thread I'd be happy to direct you to.  I know I'm getting ahead of myself but wanted you to have this knowledge when you meet with the BS.  Am hoping you don't need it, though.  (((hugs)))

  • Quilted-ta-tas
    Quilted-ta-tas Member Posts: 38
    edited March 2012

    Hello Kate!

    I sure appreciate hearing about your experiences and your willingness to point me in the right direction around this forum. Ultimately I have to have another "procedure" done according to my family physician since my margins are not clear, what exactly that procedure is will have to wait until my breast surgeon finally calls since my family physician was not comfortable doing any further interpretation of the path report.

    As you know I already feel disfigured after my lumpectomy and in need of some type of reconstruction. I have been doing some research into all the different techniques available but it can be overwhelming. 

    Since finding out that my margins are not clear I suspect I will now have to choose between a re-excision or mastectomy. Either way I am still focusing on reconstruction options. I am not adverse to a mastectomy particularly if reconstruction results are better than after re-excision and radiation. Though I am hearing that women have had perfectly good reconstructions after radiation. It might be nice to avoid radiation though, not just for health reasons but also for practical ones, I live 3 hours from the hospital and would pretty much have to take up roost in the city Mon-Fri for 5 weeks. Nipple sparing sounds great, my incision is about an inch from my nipple so I would think it is an option but who knows for sure. The other question like you said is finding a breast surgeon or plastic surgeon skilled in this technique.

    I so appreciate the knowledge in advance, please do not apologize. I find that once the ball gets rolling things happen so quickly it is best to have all your info and questions ready up front.

    I am trying to be constructive while I anxiously await for THE CALL :)

    Below is a copy of the piece of paper I keep next to phone...

    Thanks Kate, will keep you posted on any new news!

    Questions for breast surgeon....

    Still stage 0, grade 2?

    Size of DCIS removed?

    Estrogen/progesterone test results?

    How does the re-excision procedure compare to the lumpectomy I just had?

    Wire localization again? General anesthetic?

    With re-excision, will radiation start 6 weeks later?

    So many types of mastectomies and reconstruction options:

    ....skin sparing, nipple sparing, tissue expanders, fat grafting

    Able to remove both breasts and have immediate reconstruction?

    How to decide what technique is best for me? Plastic Surgeon appointment?

    With at least 1 re-excision coming I think I see reconstruction in my future...

    If trying to decide whether to do a re-excision with radiation and reconstruction OR mastectomy with reconstruction, is it fair to say that reconstruction results are better with mastectomy since no radiation required?

    Request that a copy of the pathology report be mailed to me.

  • dp4peace
    dp4peace Member Posts: 58
    edited March 2012

    Hi. I'd like to add a couple things. I had a partial mastectomy Sept 2011 with two positive margins. A re-excision in Oct left a "close" margin. I got a 2nd opinion on pathology from Dr. Lagios in Nor. CA and multiple opinions from different surgeons. Dr. Silverstein in CA does lumpectomies with reconstruction to help women avoid mastectomies if that is what they want. One thing that helped me immensely was putting castor oil packs on my breast every night for a month. google how to do it. I had about 5cm removed from a "B" size breast and it was terribly deformed for about a month and then it just started to grow back. You can not even tell now. It's been 5 months. I am one of the few who is taking an active surveillance approach since mine was low grade DCIS and I could not imagine having radiation or mastectomy. I had a RODEO MRI end of January and it was clear. I visited Dr. Laura Esserman at UCSF and she is a believer in active surveillance combined with tamoxifen for some with low grade. The waiting for results is the hardest part. It is not right you should have to wait so long. That is torture. Another important thing I recommend is daily exercise. It is the best natural anti-depressant on the planet. Eat lots of veggies and try juicing. Watch "Food Matters." Wishing you much peace on your journey.

  • Quilted-ta-tas
    Quilted-ta-tas Member Posts: 38
    edited March 2012

    Thanks dp4peace. Still haven't heard my options yet, and yes it is pure torture not knowing for this long. This coming Tuesday it will be 7 weeks since my lumpectory.

    Our Canadian healthcare system is a little different, once you are assigned to a breast cancer team of doctors, those are the ones you will be working with, now of course you can get second opinions, as well be referred to other docs that have different skills. I'll know better what to do when I get my path report.

    Both my mother and my maternal aunt have had BS and mastectomies so with that kind of history I am not totally comfortable with the active surveillance approach, though I have a great respect for that - I see alot of research is pointing to the fact that women are being overtreated.

    I forced myself to go for a walk today, haven't done that for a while. I felt alot better afterward and asked myself why don't I do this more often? I was never an exercise buff but maybe now is the time to change. I do love the vegetables!! Never did juicing but have enjoyed many a BoosterJuice - not sure if you have that franchise in the US? Hmmm maybe I will get a juicer. The nearest BoosterJuice is an hour away :)

    Thanks for your information and peace to you on your journey too!

  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2012

    Quilted- That's smart to write down all your questions as you think of them and you've got some good ones.  One thing I want to make you aware of even with mastectomy there is a chance you would still need to do radiation.  It would depend on what your pathology report says afterwards.  Just don't want you to base mx vs lump on avoiding rads.  Chances are extremely high you wouldn't but the possibility is there.  There is a great thread by Beesie on here called "No Radiation after a Mastectomy"...and other misconceptions.  

    http://community.breastcancer.org/forum/68/topic/748622?page=1 

  • gumshoe
    gumshoe Member Posts: 248
    edited March 2012

    Hi Kate33, just wanted to thank you for pointing to that link. Quilted and I are on a similar path and this really helps!

  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2012

    gumshoe- So glad it helped.  Beesie is wonderful in helping us understand all things DCIS!

  • miricurt538
    miricurt538 Member Posts: 73
    edited March 2012

           Quilted, I just want to say to you that I only read any of this tonight and I saw such a change in your outlook as I read from your first posting to the last!  You are making use of these great ladies here on these forums and they can give you very good advice.  I got mad when I started reading about how long you have waited for a report on your pathology.  Its inexcusable that you have to wait so long.  It's just normal that your anxiety has gotten enormous.  I waited 2 weeks for the path. report on my come needle biopsy and was climbing the walls.  Found a lot of comfort here.  But it was only 2 days to hear from lump. path.  I feel like someone could have made arrangements to have someone inform you of the results in the absence of your BS.  But none of this helps you now.  I pray for you to be comfortable with whatever decision you make in the future and I feel you will be alright.  love to u      Joyce

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