My day

Pure · February 2010

just to update my last post of super sad.

I went in and first thing doc told me vitamin d is low and gave me perscription. I was surprised she did this-I guess this means she believes in the Vitamin D Study.

She then said I was -I an average metabolizer of tamoxfin.

Then she very naturally says we need to do your scans. So I say we did my scans-she says, "yes but the CT didn't have contrast so we can see anything big but not anything tiny. I also want to do bone scan"

Yesterday I was told pet scan and bone-now it's an MRI. She changes things a lot:) Drives me nuts but I think this is b-c they are reasearch hospital and are constantly updating procedure based on latest research.

Anyway I told her my 2nd opioun doc thinks that I should do scans when I am DONE b-c he wouldn't change treatment plan anyway

She disagress and says "no we wouldn't we would move right hormonal therapy and no taxol"

I start to cry and tell her how scared I am etc. She is very sympathic and says" you don't have to do them eventually were getting you on Tamoxfin anyway but I just want you to know." She then ACTUALLY says it-something positive (never happens") She says

"Don't think their is no hope for mets-there is still hope. We have a lot of drugs and we are really working towards a cure with stage 4-were getting there In fat she was surprised that I felt stage 4 equaled no hope. She then went on and said "Hey, there are no red falgs for the scans-infact I am very very pleased with how well you have done so it's up to you."

I almost fell of my chair-this women is a PURE sciencetist-she is brillant but quirky and NEVER says anything positive. So this made my day.

I did the chemo and zometa-I feel nothing at all. Just a bit amped up. Anyway she said to take zytertek -that it takes away all the bone pain instantly from the zometa.

So NOW I have to decide.

1) Do the scan with contrast so they can check out my liver and bones.

or

2) Listen to 2nd opioun doc and do when done

or

3) Only do scans if I have pain

I feel great. I have made my health my life and have achieved a level of health that I can't explain. My blood work is perfect-remains perfect-yesterday onhly 2 weeks after having a baby I ran 2 miles and jumped in the pool and swam 1/4 a mile-I feel great!!!! So I am leaning towards number 3.

My husband says I like to live in denial. That might be true but my instincts here are telling me I am fine. I am really trying to listen to myself. Anyway-I am going to pray about it and would love feedback as to what you would do!!!

Also I was the VERY FIRST Duke Patient to be doing Zometa with with chemo every 3 weeks for 12 weeks. She was a bit hesitant prior to starting but I stopped her and said " I want this and were doing this-no looking back." She sighed and said ok. I feel really really good about this!!!

kimber3006 · February 2010

I've been thinking about you today - I'm so glad to hear it all went so well! Personally, I'd do it when I am done, but that's just me. Do whatever makes you feel best! Way to be the trailblazer with Zometa/chemo! She really said she felt they were getting there with a cure for stage 4? Very cool.

pupfoster1 · February 2010

Hi Pure,

I missed your original post. Sorry to hear you've been having a tough time figuring out which way to go. If it were me, I would probably just go ahead and have the scans. Seems as though if there was anything going on (God forbid) it's better to know sooner than later, right? And why the stage IV discussion? Was there some indication of metastizes? I sure hope not, but I've heard from a lot of stage IV woman that are years out from their original dx.

BTW, I am SUPER jealous that you've felt good enough to work out. I used to reguarly before my dx and am so out of it from the chemo that I can't even imagine not passing out most days if I tried. Hoping that the Taxol will be better than the A/C.

Take care,

Sharon

everyminute · February 2010

I say no to all scans unless I have pain - I guess I do like to live in denial. Or I just like to believe that feeling good equals good health and don't feel like being proven wrong!

I am glad to hear that she feels that there is hope for stage 4 and that we are getting close to a cure - great! But I still rather not have stage 4.

Glad you are feeling good.

weesa · February 2010

Hey, Pure, I want to play devil's advocate here with you for a minute, okay? And btw, I think I have told you your Onc is my second opinion Onc. I wish she was my regular Onc but I couldn't see driving that far so often. So, my onc here in the boonies has never scanned me.I would love to be scanned. Even starting adriamycin he doesn't believe in a muga. Finally when I was on aromatase inhibitors and my bones and joints ached so much I begged for a bone scan, he reluctantly got me set up for one. (it was negative.) He thinks scans are a waste of time, but I would have been so much happier if I had been scanned when first diagnosed. I know friends who were scanned--they had a peace of mind I never had. So consider yourself lucky you could get scanned whenever you want-- that is a luxury I have never had. My onc is very sweet, touchy-feely, good bedside manner but not a scientist. Wish I had more of a scientist...

Anyway, Jen, not trying to minimize anything you are going thru, I think you are incredible. But I couldn't help but think when I read you post just now, "How friggin' ironic!"

Take care... lots of healing energy from the frozen, snow-covered mountains...being beamed toward you.

Pure · February 2010

weesa-I hear you. I have had a ct and mri and a muga scan. They were good. And my blood work is beyond perfect. And well I feel so flipping good.

I was crying really hard to her about how I just had a baby and I want to enjoy this time not be going through tests.She really did'nt push me which surprised me and then commented on how well I was doing. So if it was critical she would have insisted on it-that is how she is.

I have peace of mind in the fact that i feel so good, and that the others scans were clean. I do want another mugascan when I am done and of course my breast(good one)

Anway,she was actually feeling bad watching me cry and thats when she said " we are moving closer to cureing stage 4-it's coming" It was so sweet the way she said it-like she felt so bad watching me cry and she really wanted me to know there was hope.

SHE HAS NEVER BEEN SO POSITIVE so I was shocked:))

apple · February 2010

i always say

"you;re the doctor.. what would you do if it were You"?

kim40 · February 2010

Hi Jen

Hard decision. But if it was me, I would want the scans done once I was finished treatment. I would just want to know. I would do it for my own piece of mind.

I'm curious. Why did you have a mugascan? I see you are Her2 negative, and I thought mugascans were only given to Her2 Positive women who are getting Herceptin to test their ejection factor.

kim40 · February 2010

xx

YATCOMW · February 2010

My plastic surgeon is against all of these scans.....they are not good for us AND they cause cancer......just google it. Several reports within the last several years.

I personally think you have been scanned enough......I would save scans for when you have a reason to be scanned due to pain somewhere. But I am not a doctor or scientist.

Jacqueline

everyminute · February 2010

muga scans are used for adrimycin as well, kim

Pure · February 2010

Yea I had my hear tlooked at prior to starting chemo to make sur eit was good. I want another one when I am done to see if chemo caused any damage.

YACTOW-Yes I am nervous about that as well. I feel so blessed to escape chemo without the decatron and post and pre chemo drugs-I want to really limit my exposure to as many things as possible. My husband has SERIOUS memory issues due to his treatment-it drives me crazy. His chemo brain never went away. His chemo was HARD CORE but still.

karen1956 · February 2010

Pure...when I was Dx, I had MRI after 1st biopsy which found more cancer in the breast and lymph nodes....then echo (rather than muga) and bone scan, chest xray and PET/CT scan. Since finishing Tx, no scans. My onc does not do them unless a patient asks for them or is symptomatic. I am happy to not have any scans...but my onc does blood work at every visit which I am still on a 3 month schedule. I do have annual BMD (bone density) since I am on AI's and my age. It seems that there is no standard protocol regarding what tests are done when. So I say, go with your heart and do what feels right for you. And for now, enjoy that beautiful baby of yours. Hugs, Karen

everyminute · February 2010

Pure - my husband cant remember anything and it drives me crazy and he didnt have chemo!

lkc · February 2010

Hi Honey, I am sorry you're are dealing with this, but I think you are OK. Try to relax.Keep on thew tx, and when done, do for scans .

BTW, Great that you are on Zometa.

lexislove · February 2010

So the scans your onc wants you to do ...are the ones you HAVE'NT done because of the pregnancy?

If yes, I would want them for a baseline. Think of it as scans so they can compare...IF....IF, notice I say "if", something was to happen down the road. SO, they would be a good thing.

I know the anxiety with scans. I just had my GP want to order a bone scan along with my yearly bloodwork. I freaked! I asked her why! She said, just to have for HER records. I told her, Ive had enough rads and dont want to do anything unless there is a need (pain ect.). She smiled and said ..ok. Undecided

SpunkyGirl · February 2010

Pure,

You are doing so good, and we're all rooting for you. I'd vote for door number three. Sometimes they find these tiny little things on scans that don't mean a thing, and there's no reason to worry yourself silly over them. You are doing everything you can to minimize your risks.

Carpe Diem!

Bobbie

nowords · February 2010

I was treated at the MAYO. I had MRI of breasts, before and after chemo... Bone scan and PET. I had chest x-rays and (MUGA and echo after AC chemo and prior to surgery because of chest pains...but all clear) The PET was done after surgery and pathology, I was told, as a tool for the Rads Doc. I think the surgeon thought that I would light up like a tree because my chemo failed and I had positive nodes with extranodal extension and a very large tumor over 10 cm - but nothing showed up. He seemed very happy with the results and drastically changed his opinion of my prognosis based on the clean PET. One of the Docs. said that ILC is hard to detect on scans...that millions of cancer cells need to be present to show up....and millions is smaller than a grain of rice. The general feeling of 3 of the 4 Docs involved in my care, was that scans should only be used if symptoms show up that merit further tests. Scans don't "buy extra time" is what I understand... I started Tamox after surgery and had radiation about 3 weeks after surgery. The only tests done at my follow ups are blood tests so far.

Pure · February 2010

@everyminute-I knew someone would say that LOL-Yeah they tend to have no ability to focus don't they. I am from NY and my husband NC so we have this whole NewYorker/Italian Sounthern boy thing. I talk and talk and he ignores and pretends to be listening.LOL. But seriously we thought he had add, etc but I think it was the chemo.

Thanks everyone for your responses.

everyminute · February 2010

My husband has two nicknames -

I call him Eeyore (my fav character anyway) because he is slow to react and not known to panic. "Honey the floor on the porch just collapsed!!!!" "Ok. guess I need to fix it" :-)

His other nickname is PJ - for Poor Joe. Every body meets me and says "Poor Joe" so the nickname stuck.

(I have been known to run out of gas in the driveway at least 2 times a month for starters) Pooooor Joe.

fighting4mykids · February 2010

Personally I would take the scans. I actually have been asking why they aren't doing scans for me. I finished chemo mid August, surgery end of August, then radiation October to December and now on Tamoxifen. I just want to have reassurance that things are really okay but they don't do scans unless there is a specific reason.

Your choice.

KerryMac · February 2010

I would wait. That is just me.

I would get Chemo finished, then if she still wants to scan, do it then. Really, if you are not having symptoms, why go looking for anything. Don't they say once the cow is out of the barn, early detection doesn't change anything...???

If you are feeling well and healthy and strong you probably are!

Maryiz · February 2010

Pure, I truly believe you are going to do so well. I want to tell you how much your post helped ME today because I am stage IV. What your onc. said about a cure coming actually validated what I have been feeling and reading. I just needed to hear it from you and from an onc. who is brilliant, but not --what shall I say--- flowery? You made my day. Thanks, Maryiz

Billynda · February 2010

Well, well. It looks like all these responses are not going to help you make a decision at all:) Everyone has such validated opinions for each option! For me though, I told you I just did the PET. I have just really had a hard time following my instincts on this because on the phone to my mom while I was waiting for the results of my lumpectomy I told her in my heart of hearts I know it's not cancer. Then, same thing with my lymph nodes. Then, same thing with my liver. So, I would go with Opt. 2. I would definitely want them, but not get one now, it show something then have to get another one after treatment since it wouldn't change tx anyway.

Pure · February 2010

Maryz-since Duke is a research hospital I really hold her opioun in the highest regard. And for her to actually say something like that -well it's not like her-at all...

@Billy I already had a CT and MRI, and the heartscan. They were all good-so there is the bone and the liver again but this time with contrast. Funny thing is all along she said PET then yesterday is was "no no pet just another MRI. I really feel that right now I would get some false positive that would freak me out. And honestly I am getting Zometa every 3 weeks, and taxol which is exactly what I would get if they found something. I feel no pain anywhere, I just ran 2 miles and swam 1-4 of mile 2 weeks after baby-I feel really good. I also believe in the mind and my mind is telling my body I am ok.

pupfoster1 · February 2010

Hi Pure,

I tried to post yesterday but got the dreaded newbie warning that I had already posted 5 times and I couldn't send it. I think I'm finally "official" today

So, if it where me and my insurance would pay for it, I would do the scans (I did have the PET and a bilateral MRI before surgery + more after). Maybe it's just me, but I've always been the type to want to know immediately if something is wrong so I can tackle it right away. Too bad my lump didn't show up on '08's mamo, cause I would have been SOOO on it if it had. I didn't find it until August '09 and by the time they did surgery the largest one was 6.5cm!!!! Arghhhh. I know you feel good and that is awesome, but you do have a young child who needs her Mom for a long time to come. I felt fine when my BC was found, so unfortuntely feeling fine does not always equal being healthy as we all know too well. More than likely there is NOTHING going on, but if there was you could jump on it sooner than later!

Hope I didn't confuse you more now---ultimately you have to go with your gut!

Love,

Sharon

pupfoster1 · February 2010

Well, now I feel dumb. I looked up further and saw my post did show up yesterday. Oh well, sorry for double posting!

Sharon

kim40 · February 2010

Thanks Mary for letting me know about the mugascan. I didn't know that as I didn't have one done before starting treatment. I only had one done after treatment and before starting Herceptin.

AnacortesGirl · February 2010

Sounds like you have a great onc who wants to do everything she can to make sure you beat this and raise up your family! She might not come across as a real people person but what I'm hearing is that she just wants to do everything she can. Unfortunately the tools that the onc have for us aren't that great. Let's face it, scans aren't the best because they are not definitive and they do have some risks. Wouldn't it be great if there was an accurate blood marker? Oh well.

I really agree with Lexislove. Baseline is important.

The way I see it, there are three reasons for doing scans. The first reason is figuring out the current situation. How much cancer in the breast and nodes? Is there anything else in the body that is a concern? This info lays out the treatment plan.

Next you start working the plan. Surgery & chemo (in whatever order). If the tx covers a long period of time (IMHO - more than 4 months) then how do you verify that you're on the right path? So a mammo, US or MRI during tx would be a good thing to make sure that either the neoadjuvant chemo is working (the cancer is shrinking) or that nothing has come back since surgery.

After the tx is over it's time to get those baselines. If I have a symptom 2 years from now then I want the appropriate scan for the symptom and compare it to my baseline scan so we can see if something has developed with respect to cancer or if it's something totally unrelated to cancer. Those baselines are going to give me a lot of "piece of mind" in the future. If it's 2 years from now and I get a symptom that's cancer related then I'm going to kick myself because now I'll wonder if it's been there all along and I didn't treat it when it was less invasive.

I won't do a bone scan again unless I have symptoms. The amount of radiation used in those is high. But I sure don't regret the first one that tells me I don't have bone mets to deal with at this time.

Personally, I don't mind the MRI. But then again I have dense tissue, cysts and ILC. MRI does a great job of looking at the mess and figuring out what is of no concern (cyst) and what is of concern. The US would do a good job if I didn't have so many leisons. So that's my preference.

The PET. Hmmm. Since I signed up for a trial I had the option for signing up to their imaging study which included multiple PET scans during my chemo. They are trying to determine if they can use PETs to track the effectiveness of the chemo. I've had 3 and have one more to go at the end. Honestly, for neoadjuvant chemo, where there is node inolvement but they don't know how extensive, I think a couple of PET scans make sense. But surgery takes care of the question of node invasion. So a baseline PET would be a great reference for future concerns.

Some of you may think I'm a little overboard on the scans. Not really. Some of these are standard of care and the others are related to the study. The ones related to the study really haven't provided any extra "feel good". Scans are just too darn unspecific. And I could get a clean scan today but have something develop next week. They are just a point-in-time picture. But I was willing to take on the extra risk to myself for the sake of the trial and study. Cancer has affected my family too much for me to not step up and do something to help the research.

Sorry this is so long. But after a few 3 hour PET scans I get a little passionate.

AnacortesGirl · February 2010

Ooops. Forgot to add my two cents on your original question!

Wait till you're done with taxol and then get the scans. The scans are going to show anything since you don't have symptoms that are a concern and you want to let the taxol do it's stuff. After you're done, remember that these scans are for baseline only! Don't even worry about the results because you'll be fine! They are just for future reference.

apple · February 2010

i spend half my life doing damage control for my husband.

i bought him a phone yesterday and he's already lost the charger. He can do email tho.

My day

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