July 2010 Rads

LoveCranes

Happy New Year ladies.

 I've been a bit busy with follow up appts, helping out at the school, taking my mother-in-law around to her appts as well AND the kids being out of school for winter break for a total of 3 weeks.  It's nice being with them, but 3 weeks is a long time    

Just trying to get back into my routine and not think about recurrence...it's always there but trying not to have it run my life.  As for my mood swings, oh my, they're getting worse.  It's nice to know that when I read your posts, it's comforting to know that I'm as "normal' as some of you ladies (hee hee) and that I'm not going out of my mind.

Glad to hear those tests coming back positive.  I have my mammo follow up in May/June, but I don't know if I really want to have an MRI, nor a PET scan.  I got hit with a large bill for my MRI last year (since I have a high deductible) and I know it shouldn't discourage me.  But I don't want to use all of my money on medical bills like I did last year and want to enjoy some of the money my hubby makes   As for a PET scan, that scares me too much to know if that thing is somewhere else.  I'm just taking one day at a time. 

Take care everyone,

Patty

Chicago1018

Sonia - OMG about spending 5 years feeling crap on Tamoxifien.  I hope your counselor was wrong.  I am presently blaming the Tamoxifien for several aches and pains and some EPIC weight gain.  I can take ownership for some cookie eating over the holiday season but this is ridiculous.  I feel like it came on fast and furious and wont budge even though I've been back to my proper eating for 2 weeks.

Donna/Julie - I don't think you can use the ipad to post on BCO.  I think it has something to do with the lack of flash or java on the apple products because my iphone doesn't allow me to do it either.

Julie - thanks for the tax tips on mileage etc.  I spent $10 (discounted from like $30) each time I had to park at the hospital.  It was a lot without rads but with 5 days a week for 7 weeks that really added up!  Gotta love owning a car in the city.

Tracye - Congratulations on getting up and running (even if it was to do some cleaning).  I had 3 scans when I was diagnosed.  A CT scan (drinking Barium SUCKS!), a bone scan, and a MUGA scan (which was to tell me if my heart could take the chemo). 

I saw my plastic surgeon last week for my last "expansion" and he told me that I am at capacity.  I have a capsular contracture where the TE is and he was afraid of bursting the capsule if he continued to fill it.  I still feel like the TE side is a bit smaller so he is going to try to upsize me a few cc's at my exchange surgery which is scheduled for 2/8.  I chose silicone over saline and he gave me this brochure that scared the bejesus out of me.  Possible but not proven risks of silicone.  Freaky.  Might change back to saline.  At least I am going to vegas for a long weekend in a few weeks.  J  Some calm before the storm hopefully!

changes

Hi all,

I am getting really fed up with doctors - they change their stories to suit whatever they want it to be. The radiation oncologist offered to talk to the radiologist, to see if my next test could be an MRI (due to breast density). The radiologist is NOW saying that my breasts "aren't that dense", even though her REPORT says "false negative rate markedly elevated due to breast density". Ummm, so which is it? The radiologist also said that there's no point in having an MRI for two years, because the false POSITIVE rate will be high during that time due to changes due to surgery and radiation. They tried to play it as "we don't want you to have a false positive and get upset". I told the oncologist I would rather spend a few days unduly upset by a false positive, that would easily be resolved by a biopsy, than be falsely secure by a false negative, and end up dying. THEN the oncologist says something to the effect of not wanting me to have a biopsy if it's not necessary, because the biopsy itself could "unleash" cancer cells. Ummm... if there ARE cancer cells that the biopsy is unleashing, that means I HAVE cancer again, and therefore we should have done the biopsy to find the cancer, and so that's a good thing, not a bad thing, right?? I ended the conversation by firming telling the radiation oncologist that a false positive was preferable to a false negative, and I wanted the MRI. Yeesh!! I think I'm going to post a thread and see what other people are being told about MRIs post-radiation.

On a lighter note, she said that the reason for false positives on an MRI is "fat necrosis" - basically, the radiation killed fat cells. I told her she should have aimed that radiation beam at my butt instead of my breast!

Sorry for the long vent,

Karen

Houndmommy

Karen - your comment about aiming the radiation at your butt, LOL!!!!!  Too funny! 

Laughing aside, I feel your frustration with your doctors!  They make no sense!  Like you, I'd rather have a biopsies and find out they were nothing than wait for it to show on a mammo (which by the way, 2 of my 4 tumors did NOT show on the mammo and one of those was 3.6cm!!!!!!).  My breast(s) are small and very dense.  So anyway, I don't blame you for wanting the MRI.  As for the biopsy unleashing cancer cells......can you give me more info on that?  I have heard that mentioned off and on but never really looked iinto it (to be honest I sort of don't want to know but since I still have one breast left I guess I should understand all of these issues!) 

Hang in there!  Kim 

bailey1958

Very funny Karen - and very alarming. Like you Kim, I've heard the thing about biopsy's which I feel like I've had a hundred of - and don't really want to hear that they cause more problems than potentially the one we already are looking at. It makes me want to scream with frustration - one step forward one step back. 

 Sorry to hear about your mood swings Patty - join the club. Aren't we a fun bunch. 

Sweet dreams everyone. 

Chicago1018

Karen - YEESH about unleashing the cancer cells and the inconsistent information you're getting!  I had 6 sites taken during my biopsy.  With that explanation I opened pandora's box of letting the cancer run wild!  I too think I'd prefer the MRI.  I've read that radiation changes can show up on a mammo but haven't heard much about the MRI. 

Kim - were the tumors that they didn't see on Mammo ILC?  I think I've read that it can a bit harder to detect via conventional methods.

Sonia - you obviously had an MRI after rads and no one was worried about false positives.  Is that the "standard" in Canada for follow up?  I know you said you were going to have the mammo + ultrasound anyway but I wondered if an MRI is typical.

Places you could have aimed the rads machine in place of my breast: butt, thighs, tummy, backs of the arm (aka "bat wings") 

bennybear

Hello everyone,

 Wow a lot to catch up on,  I have been reading but somehow haven't had the energy to post.

Chicago, I too am from Canada and am not having an MRI,  which my surgeon has told me I would if needed but I don't.  Though I wonder if that would be better,  I am booked for my second mammo in March.

 I am sorry that everyone is having such a tough time,  I think I am using my favourite strategy of denial re reoccurrances,  I know it is there in the background, but I am trying not to think about it.  But,  I sure am reevaluating my life and what I want to do with it. 

Patti, wecome to the club, I too have been very up and down, can't seem to make a decision even about minor things.   I find it frustrating when I don't have the stamina to do what needs to be done,  and at times I just want to curl up and hide or read a good book.   Other days I feel more in control,  that things are working out.  I guess the reality is hitting me,

 I found a good book at Costco the other day with writings on living with awareness, by a cancer survivor.   One thing struck me,  it was the idea of trying to go through a door of transition and trying to take everything with you and dropping it all,   then standing back and choosing what to take through the door,  that really struck me as I think I am standing at that door and am a bit afraid of what is on the other side. 

Karen,  I didn't know that about the biopsies which  like Sonia I also feel like I have had a million of, yikes that is not reassuring at all,   though you made me laugh about the but,  is that why my breast seems to have shrunk after the radiation? 

No wonder,  we are all having such a tough time,  now to figure out how to get to a better place,  which in my mind would be Hawaii,   I am sick of this minus 20 or more crap,  even though it is a great excuse to read.  

I think compassion fatigue is beginning to set in with my husband,  when I can't quite do what I think I should.  I have also been frustrated with my doctor as she hasn't seemed to quite understand how exhausted I am.  I guess it seemed when we were in the midst of treatment it sometimes seemed easier that things just rolled.

It hasn't helped that one colleague and another's wife have just been diagnosed with cancer.  I want to help,  but not sure I am totally there yet myself.

Sorry for the venting,  thanks for getting it. 

B

MagPag

Hi All, hope everyone is well.

Brenda, the thing about going through the door gave me some relief.  I've been tossing out and giving away a ton of stuff.  Hopefully it just means I need to get through the door.  I was worried that sometimes old people start to give away there stuff as they prepare for the end.  Thought it was some kind of foreshadowing.

Sorry you're having a difficult time with feelings and docs and information everyone.  It's hard to know who to believe.  My BS said no MRI the first year because there are too many changes from rads.  She said we'll see maybe at 18 months or 2 years.

Had the LE eval and they said it's mild, but I still need the therapy to keep it at bay.  Contra to what I've heard, they say that it is reversible and manageable.  So 4-6 weeks about 2 times per week (they want 3 but are booked), then they fit me for a sleeve and cami/sports bra.  The sleeve only when I fly and the cami all the time since most of my swelling is in the breast and armpit.  I'll have to keep a tally Chicago, my $10 parking 'donations' are going to add up again.

Anyway, I'm going to the Rehabilitation Institute and it was a very humbling experience walking through there.  So many people with major major problems, including kids, and they were all working so hard.  Everyone was happy and smiling.   Kind of confirmed for me that the physical battle, when you're actively doing things to recover promotes hope and positivity.  Too bad it's such a small portion of this battle compared to this emotional/psychological recovery.

Have a good night everyone.  Oh, Karen, have them point the machine at my muffin top   please.

bailey1958

Brenda, can you post the name of that book - I really like the concept of the door too. Was the book worthwhile? 

Chicago - I had an MRI before surgery - there was an area that lit up and required a f/u ultrasound where they couldn't find anything suspicious. I believe it was the radiation oncologist who decided to order the MRI for my six month check-up and it was booked right after the ultrasound I had in July - I wonder if it was because my concerns about my tumor were ignored for two years and then there was this false positive that required the f/u ultrasound and she may have sent me just to be thorough and close the door on any further concerns. I will ask when I see her in February if it is protocol at the BC Cancer Centre to do a f/u MRI at 6 months. I feel really frustrated for those of you who would like to have one and are being put off. When my surgeon went over the result with me - she said I should feel relieved but she also feels the mammo and ultrasound are important to get as well though.  They all see something different is what she said. I am not sure if I will ever let anyone biopsy me again.

I agree with you Donna about active recovery versus this emotional rollercoaster we are on. Sometimes I feel just downright crazy - I think I was a lot more focused when I was in active treatment. I also feel like tamoxifen is turning me into a shriveled old woman - shriveled up/parched batwings, muffin tops and butt - it's just not very pretty is it?

 

Houndmommy

Chicago - one of the tumors they didn't see on the mammo was an ILC (and yes, they are sneaky and hard to see) but the other one they didn't see was a 3.6cm DCIS. 

Donna - I have truncal LE (dx in early December).  It is very mild and the therapy really helped with all the soreness I had as well as my range of motion in my arm.  I am curious as to the sports bra/cami they fitted you for.  My therapist had me try a bunch of bras/camis/underarmor that I bought myself.  The ones she suggested I use are okay but still not great.  I am not in therapy anymore (she taught me the massage, exercises, etc.) and I'm back to being very sore again.  I can't figure out where to find the time to do the massage.  It is soooo frustrating!

Emotionally I have no idea where I am.  Right after Thanksgiving I felt great but the stress of Christmas pulled me back down and I'm having trouble digging out.  I'm not depressed, just blah (of course the cold, dreary weather here in PA doesn't help).  I feel like I just go through the motions. I like the door analogy too. Not helping is the fact that I have pretty significant jaw pain which I want to believe is the result of a lot of dental work I had last year that has caused my bite to be off but of course I am terrified it is bone mets.  I haven't gone back to the dentist yet because I just don't have time.  I swear, when I was dx'd with BC someone made my days 20 hours long instead of 24.  I just can't seem to get it all done!  Oh well, I'd better get back to all I have to do..... 

Have a good day!

bennybear

Hello

 Sonia,  the name of the book is the book of Awakening,  by Mark Nepo,  subtitle Having the life you want by being present to the life you have.  It is a daily book of writings that I have found quite profound although I have only read a small part.   I found some analogies really struck me and were helpful. 

Donna,  I am glad you found it helpful,  I think we are all trying so hard to make sense of this and what lies ahead.   I agree with you and Sonia that it was easier in many ways to be in active treatment,  because now we have to face this and the future and mostly we are on our own.

I started acupuncture for the fatigue, and will begin a restorative yoga next week,  followed by a support group.  I have decided I need to actively pursue my health.   I also am going to commit to the picking up the pieces plan,   Sonia, how is that going for you?

Kim,  I understand the blah,  this all has just taken so much energy.   I hope the dental stuff all works out,  I did read on here that some think there is a connection between root canals and the infection and breast cancer, but my dentist who is also had breast cancer doesn't think so.   I am sorry it is one more thing to worry about.

I am hoping if I can spend some time regenerating then I can move forward,  I wish all of you the same,  Here's to a year of HEALING!!! 

Brenda

Chicago1018

Kim - It is scary to think that some of them don't show up on the mammo.  I guess our discovering these things is only as good as the technology we're offered and following our guts.  I remember coming in for my breast ultrasound and seeing my mammo up on the screen (not knowing it was mine) and thinking shit that doesn't look good.  I am so thankful my primary care doctor found the lump during my annual exam.  After she pointed it out to me I can't work out how I missed a 5CM tumor in a double "A" breast!

Sonia - I get the feeling on tamoxifien making you feel shriveled and old.  The aches and pains, the moods swings, and feeling all bloated in the belly and heavy isn't the best.

Donna - My brother had rehab at RIC after his car accident and subsequent stroke.  I would go with him to the treatments and it was truly humbling to see some of the battles people were fighting.   He recuperated so fast working with all of the terrific people there. 

Back to work.  Going to the bears game on Sunday. . .I must be a glutton for punishment because it is supposed to be 20 degerees.

bailey1958

Brenda, When I went looking for the book info on author Mark Nepo who wrote the book I asked about, I found this poem on his website that he had written in a book of poetry about surviving cancer. Wow. Felt like he was in my head. Thoracic SurgeryIt was like jumping
with full consent
into an empty well
so deep I only remember
falling in the dark
till falling without
direction put me to sleep.
Then I woke broken
and battered with no
memory of impact.
Ever since, it’s been
Impossible to let go
and I tire and ache.
When I do sleep, I
wake with this shoulder
burning or that flank of
muscle bound or the veter-
brae in my neck locked. Afraid
to let go. Never knowing how
or if I’ll wake. And true,
the trauma and pain echo
smaller and smaller. But
I’ve had to redefine
normal like putting
grit in paint. For
to breathe is sore;
to inhale, in-sore;
to exhale, out-sore;
to dream, bright
and sore. And now
after 12 injections
of morphine and
180 capsules of
codeine, I fear
the unanesthetized
days. Now I’m told
a side effect is
depression—the heart
grown sore. Now I must
strip the medicine
like clothes. The
depression, like
a zippered cloud
around my head.
Must nakedly
with full consent
jump back
into the world.
Everyone’s saying—
C’mon. Let’s go.
But I entered this
and nothing’s been
the same. How can I
jump on out and not
fear the world is
a broken cage?

Houndmommy

WOW!  Thanks for sharing Sonia.

spendygirl

Hi everybody!  Want to mention that it was my rad onc who ordered the 6 month MRI as there are three "areas of enhancement" they wanted to check up on.  I don't have a copy of the report yet, but I'm assuming they are the same or gone since the nurse said it looked it.

I always think that I think too much about cancer, it is so reassuring to see that others do too.  We (family) hardly talk about it any more since "I look fine".  But I'm very excited that I'm getting my hair cut for the first time in a  very long time this afternoon!  AND, going go look at a new (used) car.  Good times

On the other hand, something motivated me to pull out the old pathology report and read it again.  Wow, what a difference time makes.  I saw, for the first time, that I have lymphovascular invasion and angiolymphatic invasion, but node negative.  So of course as I do, I researched the crap out of it....not sure that I know more than I did before.  I think breast cancer does what it wants to do.

It's a beautiful day here on the west coast of Florida, that seems to always help my mood.  Thursday I drove to work in 33 degrees!!  I know, I know...that's nothing compared to up north, but I live in Florida!!

Hope you all have a lovely weekend and as always, thanks for being there.

changes

Hi all,

Hope everyone is having a nice weekend. We have decent weather here today for the first time in weeks.

 Tracye - I've dragged out the pathology report before, too. I am starting to decide that I am "over-educated" about cancer and it is freaking me out. When I saw the breast surgeon the last time he was reading from his surgical report (which I never got a copy of) and read that the tumor was "very near the chest wall". I nearly yelped in horror. I had to talk myself down, reminding myself I had good margins, etc, etc. Then when I was at the radiation oncologist SHE was reading from her report and said "and your oncotype was 24". I DID yelp that time! I assured her it was 9, not 24, and then came home and dug out my report to reassure myself (and yes, it's 9). I think you're right - the cancer's going to do what it wants to do and no matter how much we obsess, it won't change anything (doesn't stop me from obsessing, though!)

Karen

bailey1958

Hey Everyone,

Karen, my tumor was also near the chest wall but that is why I had the radiation which they said is how they "clean up the area". They said as a result my margin was not good because of its proximity to the chest wall and lack of tissue in that area. I, like you am try not to let it freak me out.  Never had an oncotype - whenever I hear all you USA people compare your scores I do feel like that was a missing piece which then makes me feel like I should have got chemo - oh will this worry ever go away.

Definitely feel like I am a radically changed person after spending the weekend with an old friend I haven't see since cancer. I could feel the change in me so strongly - I was surprised. I can only imagine how different I must have seemed to her. The changes have become clearer and clearer to me - I feel like I am just really starting to see and feel the new me. I think the intensity of my connections to others has really diminished. Sometimes I feel pretty alone - even when surrounded by others. Weird.   

bennybear

Sonia,  that poem is excellent,  it really expresses the change.  I agree that I am a different person,  I share that weird feeling that I am quite alone at times.  I wonder if it is because others just don't seem to really understand,  makes one feel alone? 

 I also find I have trouble making decisions and at times just want to bury my head in the sand.  I usually think I am a strong person, but right now I seem to question everything. 

 Tracye,  33degrees !  we are going to Florida at spring break,  hope it warms up by then...   It has been minus 30 with a windchill and this seems to have lasted two weeks,  I really feel I need the sunshine and a chance to go for some long walks. 

Strange when I heard Steven Jobs was taking time off to heal it made me glad that he sees the need.   I don't know why it seems okay to me for others to do this, yet I am having such a difficult time myself,  Way too type A,  and that part has to go,  and I think it is actually to some degree.

Thanks again for being there.  I love that we can share how we really feel and there is no judgment only support,

b

bailey1958

I have a lot of trouble with decisions too Brenda.  I feel much less decisive and unable to think quickly, no ability to multi-task and find it hard even to focus on one thing well, problems making decisons in all areas and this includes driving, my focus is off, it's like I don't hear well, feel more needy, want others to do things I would have done before without a thought, hesitant, nervous, uncertain, afraid I'll make a mistake and let someone down, can't concentrate like I used to on something, feel like I am in a tunnel, or under water a lot of the time and sound is coming from a far away place. Less committed, less connection. I wasn't ever a fan of Michael Douglas and now I feel obsessed with anyone who has had cancer including him - insisted we watch entertainment tonight this evening so I could see him on the Golden Globes. He got a standing O and I started to cry. I feel like I am living in slow motion and everyone else has sped up. 

bennybear

Wow,  that makes me feel so much more "normal", Sonia as I could have written most of what you did,  It is a very weird place to be in, so vulnerable and fragile when I am used to being pretty strong.  Maybe we have just used so much energy on everything big that there is not a lot left for neverything else.

I read this book on Freezing as a stress response,  we always think of fight or flight when dealing with stress but freezing is one that animals do,  and maybe that  is where I am at,  right now, since I have tried  running away and I can't do that,  I have "fought" what I had to,  now i am just tired and frozen works?  LOL thank goodness the weather is warming and maybe I will too. 

b

changes

Hi all,

Sonia  and Brenda: I can relate to what you both wrote. I too feel radically changed. I still feel like I'm getting to know the "new" me and mourning the loss of the "old" me, and I don't think the transition is done yet. I also feel very alone. Even those who try to be supportive don't really get how life-altering this has been - and some of my friends and family didn't even TRY to be supportive - they just disappeared on me. I'm still really struggling with "what next". I am considering moving to the place I grew up (I moved to the town I currently live in a few years ago for a job, but I've never been completely satisfied living here). I had always thought I would probably move home when I retired, but now I don't know that I want to wait for something that may never happen. I'm fearful of making the wrong decision, though, and have lost all confidence in making the right one. I'm trying to move forward with my life, but I feel like I just want to hide because I keep expecting something bad to happen.

I did go shopping today and bought myself some new things, including a raincoat. It was more expensive than I would usually have bought (I'm very cheap), but I figured what the heck. If I get sick again, I'll regret not buying the raincoat, so I went ahead and bought it. So far the only "good" thing that's come out of having cancer is I'm treating myself a bit better. I'm still waiting for all the great philosophical insight that supposed to come from confronting your own mortality!

I've also found myself monitoring the health of others who have cancer, and it feels like a personal loss when something happens. I don't even LIKE Michael Douglas, but I'm still rooting for him. It's like we all have a shared trauma AND a shared bond.

I'm so glad you're all here - can't imagine trying to work through this all on my own.

Karen

spendygirl

Brenda - OMG, wind chill of minus 30???  I can't even wrap my brain around that.  You will have no worries when you come to Florida.  It was 76 today, beautiful and sunny!!  Well, today is my 31st wedding anniversay (I'm 48 - yeah, child bride).  Know what we did?  I fixed myself a salad and my DH fixed a salad.  I think we're exhausted from all the medical stuff.

Sonia, funny that you mention seeing an old friend.  I have to go to an annual trade show next month, last year I hadn't been diagnosed yet.  I know most of the people attending, some for 20 years.  I'm already stressing about seeing them.  They will look at me and think I look the same, but they'll be looking at a very different person.  Nothing is the same.

Karen - I find myself doing the same thing, buying things that I wouldn't normally.  I'm also very cheap.  I bought a very expensive car this weekend, normally wouldn't have thought about spending this much.  But I can't get over the feeling that I better just do it.  I feel like I'm living waiting for the other shoe to drop....sounds dramatic doesn't it?  But that's how I feel.  I guess it's probably NORMAL to feel that way at this point in our disease.

I'm very afraid for Steve Jobs.  Saw footage of him from October and he's so thin....

Is anybody's hair thinner (without chemo)?  What could cause that? 

Thanks everyone for being here - love to all.

changes

Tracye,

Okay, your new car puts my new raincoat into perspective! LOL!

With regard to the thinning hair, are you on Tamoxifen? That's one of the side effects. It's not causing the hair on my head to thin noticeably, but it is causing my body hair to thin, which is a bit weird.

spendygirl

Karen - my car is 11 years old!!  My DH would normally fight me on a car....but I heard him say to my son "we've had a rough year".  This is the guy who can't say the word cancer....

I was on Tamoxifen for 5 months till the hysterectomy, now Arimidex.  Must have been the Tamoxifen....

bailey1958

You are completing accurate with the freezing response Brenda. I am a therapist and use an approach called sensorimotor psychotherapy which is about working through the impact of trauma using the wisdom of the body in the process.  As far as I can tell cancer has been a trauma for me and the exact description of trying to run, turning and fighting and ultimately not being able to escape and freezing feels really accurate to me - not much can happen in the brain when your frozen. That would be me too!!

Tracye and Karen - you go GIRLS!!!! Raincoats, cars - how about my new florintini and baker leather boots that were soooooo expensive I'm too embarassed to admit how much. You guys just made my day  

bennybear

Hi all,

 Thank goodness the weather has improved to more normal and we could go for a walk,  last week our poor old dog could barely last a minute or two outside.   But I am still looking forward to somewhere warm. 

Tracye,  I laughed about your salad anniversary, is that what they mean by salad days?  Last year our anniversary was the day my sentinel nodes were mapped the day before surgery so it was a non event.  I am hoping this year it will be better,  but you are right about the exhaustion.  Enjoy your new car!!!

Karen,  I think you have nailed it in the transition and I am not even sure who I am yet   I guess that is why it is so hard.  I too have had disappointments with a few friends that our pretty tough to come to terms with,. I too struggle with what is next,  because I think the importance of things have changed for me too.  It is really causing me to evaluate what I want to do in the future.   Enjoy that new raincoat.

Karen, Trayce and Sonia,  okay we are so in this together.  i have bought all  new appliances,  all of a sudden it seemed very important to me to replace our 18 year old fridge,  then the washer died.   I was speaking to a friend whose husband died last year and she too has been spending money she normally wouldn't.  My take on this is that I am thinking what am I waiting for,  let's enjoy life now!!!

Sonia,  I am glad you agree about the freeze response,  it just hit me that it seems to fit,   It makes me feel better if it is just not me.   I am a counsellor as well,   but boy when it is me,  I don't see as clearly.   I am happy to be seeing a therapist at the cancer centre who is really helping.  Enjoy those new boots they sound great.

Thanks for all the sharing,  I find you guys really help.

b

LoveCranes

Karen - I liked what you wrote about the rads to reduce the fat.  Made my day.  I too am treating myself better.  Not a new car...but finally upgraded my phone.    It's just the little things in life that I am now appreciating.

Brenda - I need to check out that book at costco.  I'm been in a funk lately and reading more stories and different books about bc.  Some days, I feel like I just need to stop and go on with life.  Other days, I feel like I need to know more about the type that I have and what I can do to prevent it from coming back.  What a crazy circle that I continue to go in.

My hair is thinning as well and I only had rads and am taking tamoxifen.  It's depressing to see my hair falling out.  I had a lot to begin with and it's just a gradual thing...but I have my appt next month and see what she says about this SE.  The other thing I noticed is my eye sight seems to be a bit blurry these days.  Not sure if it's a SE or just me reading too much.  Another thing to talk about with my oncologist.

 I have a question for you ladies.  How many are still seeing all of their doctors?  I have a follow up with the rads onco, the med onco, my bs and obgyn.  I'm debating about keeping my appt with the rads onco because I don't feel like I'm getting anything out from her.  As for my BS, he wants me to get a mammo (again every 6 months), bone scan, chest x-ray and blood tests for the tumor markers.  I know that we need to keep on top of things, but this is seriously draining my wallet.  We have an extremely high deductible and I know it's cheaper to pay for preventive than it is if it come back.  But just having a hard time deciding if I still want to see all of these doctors.  I guess I'm also in the mind set of "If I don't know, it won't hurt me".   In the end I'll probably still keep all of my appts, but still....it would be nice to cut back on the # of docs looking at my boobs.

Take care everyone. Hope all of your appts goes well.  Stay healthy.

 Patty

changes

Hi all,

 New cars, expensive boots, new appliances, new phone! Good for us!

Patty - I've wondered about Tamoxifen and eyesight. I don't see as well as I used to, but I don't know if the Tamoxifen has anything to do with it, or if it's just aging. I still have to see the surgeon, the medical oncologist, and the radiation oncologist. As I understand it, the surgeon and rad oncologist expect me to see them for 5 years and the medical oncologist and I are in it for life (LOL). I really DON'T see the point of seeing the radiation oncologist. However, I am afraid that if I cancel the appointments and have a recurrence, that I will be viewed as a "bad" patient. Neurotic, I know... sigh. I agree that it's too many doctors appointments. I get all churned up for the week or so prior to them, and just about the time I start to calm down, another appointment is coming (I see the medical oncologist on Monday).

Hope everyone is having a good week!

bennybear

Patty,  I too have felt in a funk,  good expression, hope this doesn't last as I am bringing myself down.  I too want to move forward, but I am hoping if I spend a little more time licking my wounds that will be easier?

I will be followed by the surgeon for life,  but the radiation oncologist told me as my breast surgeon is very thorough he didn't need to follow me as well.   I don't have a medical oncologist as I am not on meds.   Hard to balance what is necessary and what is a good idea.  I am reassured because I have an excellent surgeon.  

Take care, b

Chicago1018

Things I've spent money on since my diagnosis: trip to Hawaii, trip to Mexico, trip to Vegas(next week!), trip to Wine Country (coming up), tons of clothes (including a really great pair of leather boots!!), and many many long luxurious dinners with my hubby.  Like many of you I just wanted to treat myself.  Felt like I really deserved it.  The dinners out were particularly important to me because I spent so many months on chemo feeling like crap, not wanting to leave the house, and all food tasted like garbage that I was just so happy to enjoy a restaurant. 

Sonia - I don't have an oncotype score either.  Doing chemo before surgery they don't even test you for it because it is kind of a moot point since you've already had the chemo.  I also don't know what stage I was/(am?).  Because the chemo shrunk the tumor they don't know exactly how big it actually was or if my lymph nodes were involved.  I know I was at least a stage 2 or possibly a 3.  I feel uneasy about that level of uncertainty but my BS convinced me that it wouldn't really change the course of things. 

Patty - I've read that tamoxifien can increase your risk of cataracts and also some other retinal issue that I can't remember the name of.  Probably eye strain but doesn't hurt to get it checked out.

I am starting to get nervous for my TE exchange surgery next month. . .it is coming up quick!  I am hoping the procedure will loosen up this brick boob feeling I still have on the rads side.  Still so tight.  Luckily I have a long weekend away next weekend to take my mind off of it. 

Donna and Julie. . .GO BEARS!!!!!