July 2010 Rads

bennybear

Trish,  I am so sorry that you have to go through this again,   I hope and pray it all goes well for you.  It sucks!!!!!!!    hope everything goes well Monday. 

Karen,  Yikes that is hard,  that is what my brother had and it is really tough.  A colleague that took over for me last year now has cancer as well,  It is so rampant.  So I understand what you mean.  But you are right none of us really knows.  I found it reassuring when I spoke to the cancer counsellor about feeling guilty because others are a lot worse than me (at my post surgery two of the women were only 25 and it really upset me).   She said the process is the same no matter what the numbers and stages.   Yet I too sometimes like a wuss and that I am making too much of this.   Then I think I just need to face it,  deal with it and put it behind (beside) me.  I too am really struggling with some big decisions,  I am trying to give myself time to heal and get stronger emotionally and physically and then think about them.  My son says I am in my head too much,  and I think he is right,  I am finding that the yoga is helping so I am not obsessing so much,  and am trying to just be more.  Other than my poor knees are screaming at me. LOL.  So I hope you can give yourself some time and space for the right answers to emerge,  which I know is easier said than done.  I have always thought that you should not make a major decision after a major loss,  that you need to give yourself time to process.  Yet sometimes your gut is telling you something that is hard to ignore.  apologies for my long winded reply but you certainly struck a chord with me. 

Sonia,   thanks for the link I will take a look.  I think I am doing okay then I catch myself planning enough time after my upcoming routine mammogram,  for the ultrasound than a possible biopsy before I go for a holiday,  so I guess it is not so much just in the back of my mind as I like to think. 

b 

PS  Has anyone heard of the study that menopausal women with the most symptoms had the least breast cancer,  found that interesting. 

NotAgain2015

Thanks for all of your comments.  Now that 24 hours have passed I'm doing better.  Either that or I'm in denial.  Yesterday afternoon and evening were hard - telling family.  Hearing some of them choke up.  ...I've been reading a bunch and learning about wigs and scarves and starting to get my house ready - assuming things might start moving quickly.  I know that some here have gone through what I'm headed for - I was lucky with DCIS the first go round. 

Some of you were talking earlier about spending money on ourselves.  I went hog wild today.  Bought a new kingsdown mattress set, am looking at a new TV with streaming video and a pocketbook.  Talk about binge shopping - but for all the wrong reasons!  Not sure it helps but it kept my busy today.  My DH tagged along, he is being very sweet. 

For obvious reasons, the thought of losing my hair is just terrifying.  I work, thankfully most often from home, but am starting a big project the week of 2/14.  I wonder how this will affect my job, etc.  My mind is racing, and sadness is just at bay,  Like tears are right there if i were to let go.  At the same time I am resolved to fight and I will get through this! 

Thanks for being there when I was the most terrified. 

Trish

changes

Trish,

There's nothing wrong with tears - cancer is definitely something to cry about. You mentioned losing your hair - are you absolutely sure you will have chemo? Not everyone with IDC has to have chemo (I didn't). I hope your doctor comes up with a good treatment plan when you meet with him/her on Monday.

Best wishes,

Karen

bailey1958

I didn't have chemo either Trish. I realize you are preparing for the worse case scenerio - but I'm hoping for the best for you. This shopping spree we are all on is good for us - we deserve it!

Houndmommy

Hi Trish,

Glad you are feeling a bit calmer.  I just wanted to chime in and say I didn't have chemo either and my breast was full of cancer - I had a smorgasboard, lol!  Anyway, I understand you are preparing for the worst case scenario but hopefully it won't come to that. 

Sending hugs your way,

Kim

NotAgain2015

Oh my gosh you guys have given me a ray of hope!!!!!  I've read all around these boards and so    many women do seem to be doing it - but to hear all three of you guys say otherwise does give me hope.  Mine is small.  So maybe it won't have to be the worst.  Thanks so much for letting me know I'll let you know what I learn after my appointment tomorrow.  I do love my BS.  He has a calming effect but is a straight-shooter (like i guess they all have to be in this business).

Big sigh of temporary relief!!!!!

Trish

changes

Trish,

It will probably depend on what your oncotype score comes back - and they can't do that until they have the tumor out. Low oncotype means no chemo, high means you have to have chemo. However, if it is HER2 Neu + they always do chemo and don't bother with getting the oncotype. The oncotype is expensive (about $3000), but more insurance companies are paying for it, because it can save them a large amount of money if no chemo is needed. I didn't even meet with an oncologist to discuss the possibility of chemo until after the surgery - I think that's fairly standard procedure.

Thinking of you,

Karen

NotAgain2015

Thanks Karen.  My insurance company paid for my BRCA test (which was negative), so I hope they will pay for Onco type. My guess is they will.  I am blessed with good health insurance, thank GOD!  So sounds like surgery will likely be next.  Trying to settle into this mindset and get ready to do battle in 2011.  I hope I don't have to do chemo, but if that is what it takes to keep this at bay, bring it on.  I wonder about surgery options.  Since I have had radiation on the other side, I think that lessens my mx options.  But we'll see.  Trying not to jump too far ahead, but it's hard to not think in terms of worst case and then back off from there... 

Trish

spendygirl

Hi Trish - add me to the list.  My tumor was 1.8cm, node negative but lymphovascular invasion, Oncotype score of 19.  NO CHEMO.  Like you said, if that's what it takes to fight, you know you'll be able to do it, but I really hope you don't have to.  Did you say you see the onc tomorrow?  Please let us know.

Glad you went shopping!  All the best,

Tracye

bennybear

Hi all,

Trish,  one more for the list,  mine was small IDC and I did not have chemo either.  So fingers crossed,  but whatever is needed to fight this beast.   Good luck tomorrow. 

Good on you for the shopping,  I tried one of those Kingsdown beds and it felt like a cloud,  so hope it helps you get some rest in the coming days. 

Okay more guilty confessions,  on the way home from my radiation treatments I stopped several times to look at leather couches and the one I special ordered last summer came this weekend and looks and feels great.   Who knew this would be so good for the economy,  LOL     I think I am beginning to sound pathological, YIkes. 

B

bailey1958

Hardly pathological - but if so add me to that list. Not going to lie - shopping feels good.

changes

Congrats on the leather couch! Nothing pathological about it - why not get what you want? I'm relieved to be able to enjoy things again - for awhile there I was getting no pleasure from anything. I want to buy a new HOUSE! (got to sell the old one first, though, LOL!)

Karen

LoveCranes

I'm so sorry to hear you, Trish, but you have all of us by your side.  I didn't have chemo, but mine was IDC and high for ER&PR.  You have a lovely group of ladies here for support.  I sometimes wish I can get on this site more often, but at times I also feel like I need to start living life and moving on.  For me it's a hard balance. 

 You ladies crack me up about your spending spree.  Add me to that list as well.  We have a family get together and one family brought their xbox.  Omg!  I loved it.  Yes, I'm a gamer.  We have a wii, but the xbox kinetic (sp?) is awsome.  I can't believe how much exercise you can get from it.    That's the next thing on my spending list. 

Take care everyone. 

Julie50

Trish--My computer has been down I just read this...HERE IS A BIG HUG, I am so sorry to hear this, it just broke my heart in two...You are a tough cookie and will get through this once again. remember you have all of us...Holding your hand....Wiping anyway any tears.....

Julie50

Trish-My insurance paid for my Oncotype test it was $4,500 and paid in full.....

Chicago1018

Trish I am so sorry to hear of your results.  I know that you'll have whatever course of treatment that will give you the most peace of mind. 

Unlike many of the women here I did have chemo, although I had a large (5cm or so) invasive IDC.   I would be more than happy to give you any details or answer any questions you have if that is the route you go.

Sending you many cyber hugs!

Julie50

Chicago---Getting the SNOW..) It sure is pretty tho.

TrishI hope you are having better day today...Remember sending you many prayers...

NotAgain2015

You guys are the BEST.  I can't thank you enough for all of your comments, well wishes  and prayers.  It has meant the world to me this last week or so.   

I met with my BS yesterday and he is suggesting lumpectomy and radiation again.  That my already radiated breast won't do well post mastectomy, that radiated skin doesn't heal well, and that if I was considering mx, to just do this new one.  He went on to tell me that studies have confirmed that in my situation, there is no difference in long term survival whether we choose mastectomy or lumpectomy, that women choose mastectomy for peace of mind.  So, I think i'm going ahead with it.  I know I can do it, I did it last year - not fun, but do-able.  So next to learn is chemo or not.  He said he was waiting for one more set of results on my pathology and that that - and whether or not I have positive nodes will decide it.  So i'm not out of the woods yet on that one.  Plus the whole lymph edema thing...

It all feels so surreal.  To know that I'm facing this AGAIN and its more scary this time since it is IDC.  I have an MRI scheduled for 2/7, pre-op on 2/10, surgery on 2/18.  He said to expect a call back after the MRI for more biopsies.  That they often return false positives, but that if there is anything else suspicisous, they might as well get it out. 

Do you guys have any thoughts on mastectomy vs. lumpectomy?   

Looking forward to trying to put this out of my mind until Monday... not sure I can. 

Trish

changes

Hi all,

The stupid opthamalogist's office called on my way home from work to cancel my appointment for tomorrow. So now I have to find a time to reschedule it that does not disrupt my work schedule too much and WAIT to find out what is wrong. I am not that freaked out by the idea of cataracts, as I am by the thought of "what if it's NOT cataracts??" My mind would have always gone to the "bad place", but with my coworker with the brain tumor, my mind is much quicker to head to the bad place. I had a spell earlier today where I felt a bit out of it and everything seemed kind of far away. Needless to say, I started googling brain metastasis and then I really freaked out. However, the feeling passed and I was able to reason with myself that this meant it was more likely a blood sugar issue than a brain tumor issue. I wish I could see a dizzy spell as just a dizzy spell, and not evidence of doom and gloom.

 I am also a bit freaked out about what's going to happen if I have to go off the Tamoxifen because it's causing cataracts. I am not okay with not being on an anti-hormonal medication, but I don't want to get my ovaries out either. Not all that thrilled with the option of a monthly Lupron shot, but looks like that is the best choice.

Trish - hope your appointment went well (I think it was today??)

Karen

NotAgain2015

Hi Karen,  sorry to hear you are having cataracts.  Did you just notice your vision getting cloudy?  Just wondered what the symptoms are.  I so totally get how you/we go to that scariest place.  We just can't help it - given what we've been through.  Very sorry to hear about your co-worker.

I have a friend that had cataract surgery to remove them and it was a breeze - if you have to go that far.  Sorry it is probably the tamoxifen.  I have read that it can cause them.  BTW I might as well fess up the group that I have not started taking it and look where I ended up!  PS what is lupron?  Is that another way to receive something like tamox? 

changes

Hi Trish,

I've just had a gradual "dimming" of my vision - nothing awful, but indoor lighting just seems inadequate, like someone replaced all the 100-watt bulbs with 60-watt bulbs. I mentioned it to the oncologist and he said it is classic symtoms of cataracts, so he wants me to see the eye doctor. I'm also noticing "halos" around headlights at night. Since I am premenopausal, Tamoxifen is the only hormonal I can take. BUT, if we shut down my ovaries, I could take one of the AIs. Lupron is a monthly shot that keeps your ovaries from working. I'm too afraid to NOT take something. I don't know if I could keep up the Lupron thing for another 4 years, 4 months, but I think I could make it for a year or so, which would be better than nothing. I first have to see whether I really am developing cataracts, then see what the oncologist wants to do.

How did your appointment go??

NotAgain2015

I had replied just before your post today.  My update is right above your post.

Chicago1018

Julie - I hope you've dug out by now. . .crazy snow storm we've been experiencing.

Karen - I am so sorry your eye doctor canceled. . .hopefully he can fit you in quickly so you can get to the bottom of this!

Trish - I had a skin sparing mastectomy with immediate reconstruction with a tissue expander.  Obviously, everyone is different and you need to feel like you make the right decision for you. . .but here are some of my thoughts.  I had chemo first in an effort to shrink the tumor small enough for a lumpectomy but it didn't get small enough where he thought he'd get clear margins. I was prepared for that outcome but I really wish I had been able to have a lumpectomy for a number of reasons.  The reconstruction process with radiation can be tough.  Many PS's won't do a flap procedure if they know you are going to have rads because it is so hard on the skin.  My surgery was in May and I am finally having my exchange surgery on Tuesday (to swap the TE for a permanent implant). I wore a prosthesis from May until October until my skin recovered enough to get fills.  My MX breast is still smaller than my other one and my PS thinks I'll still need a lat flap down the road to achieve symmetry.  That totals 3 trips to the OR plus one more outpatient "procedure" for nipple reconstruction.  Again. . .if a MX is what will help you feel at ease, you should do what is right for you. . .just a few tidbits of my experiences.  Hope you are hanging in there. 

LoveCranes

I'm getting lupron shots but I only go every 3 months.  I think they have different doses, but not sure.  I'm not sure how long I'm going to be on it, but it sounded like a while, until I go into menopause...which I"m not sure when that's going to happen.  (I'm in my mid 40's).  I also read on different posts that you can only be on lupron for 6 months (not sure if it's a total of 6 shots or 6 months straight), but something that I'm going to talk to my onco on my next appt.   I'm also taking the tamoxifen and my onco wanted to make sure that not only does it not come back in 5 years, but further down as well.  So I'm just crossing my fingers. 

Karen - my mother in law had cataracts and her surgery went fine.  No pain what so ever.  She was an outpaitent so they did put her under.  The dr did show me how cloudy her eyes were because of the cataracts and she couldn't see your hand in front of her face.  Her's was an extreme case, but she can see now. 

Stay warm to those of you in the mid-west/east coast. 

bailey1958

Hi Everyone,

I've been having my share of f/u appointments and have been given a strong message to get on with my llife - that breastcancer is in the past and I need to stop making space for it in my head. Easier said than done. I realize I spend time on this site -  multple times a day and I feel as though I am carrying not only the burden of my own fears but also at times the stories of all of the women I read about on this board. I was asked today if it might be time for me to let this place go and my doctors wondered if investing energy into breastcancer prevents me from doing that. How do you guys feel about this? The idea of not having you makes me feel scared. I wonder if there are others ways to connect?

Sonia

changes

Thanks for the info - I could tolerate a shot every 3 months better than one every month. I don't know whether I'm hoping they diagnose cataracts (which they could fix) or just tell me I'm getting old! I've heard the surgery isn't bad, but I'd rather NOT have another surgery.

Chicago1018

Sonia - I've been wondering the same thing myself lately.  I have the email updates coming to my iPhone whenever someone posts to this and one other thread and I literally felt anxiety that I couldn't reply to you guys over the weekend while I was on vacation.  I had a dream on my last night in vegas that I had a recurrance.  It was so vivid that I woke up and I had to convince myself it wasn't true.  It made me start to wonder if I don't need to scale back my reading on this site.   But also like you I can't imagine not checking in with you ladies from time to time.

changes

Sonia and Chicago,

I feel almost ill at ease if I don't check this site everyday. I'm not sure I could actually explain why, other than this has become my "safety net". I think I mostly find it to be very healing to be here. I have scaled back to only reading certain threads, rather than feeling compelled to read almost everything. I think I am moving on in some ways and don't feel "stuck". I think it's just a long, slow process. My oncologist said to expect it to take 2 years after active treatment ends to recover psychologically.

As far as other ways to connect, there's always Facebook. I have someone I "met" on Komen.org who has become a Facebook friend, and it's really nice to read her comments about ordinary life things. I don't know that I really want to post my full name here, but if anyone wants to stay in touch via Facebook, I'd be fine with sending a PM with full names.

Karen

bennybear

Hi all,

 I really don't know what I would do if you weren't here.  Karen,  I too find so much solace here.   I appreciate your thoughts that I am not insane when I engage in serious retail therapy.

Sonia,  I understand how hard it is to move forward,  I read on another thread that an oncologist said it takes 2 years to recover psychologically,  I feel like I am making progress slowly,  but in ways it is all just really hitting me now.   I know it is important to move forward,  but I think we are all trying to come to terms with what has happened and we will move forward as we work our way out.  

I think most of us our having anniversaries,  tomorrow is one year from the mammogram that found my cancer,  so I am feeling very vulnerable.  I did speak to the cancer counsellor yesterday and she said she thought it perfectly normal that I was feeling like a mess.   She says she worries more about people who say it is all behind them too soon. 

Chicago,  I too had an awful vivid dream last nite that I think was about recurrence and me asking for help.  I hope you had a great time in Vegas.

I am hoping we can all move forward together.   Again I have found so much support from you all.  I again was terrribly disappointed by my friend who I had made plans to fly out and see months ago only to find out she will not be there when I am now.    I do feel so hurt and disappointed at times and it helps so much that I can share it with you all.  You just seem to get it. 

I am going to join a support group that starts Monday so I hope that will also be good. 

Hugs to all,

Keep warm, Brenda

bailey1958

I feel as though I can't move on without you all agreeing - I can't bare leaving you when we still need each other emotionally. Is there a way we could start a group together  off of this site? Like maybe a yahoo group where we can just check in with each other but where we aren't compelled to stay on after our daily check in and search/read other threads?