Stage I sisters... did you get any SCANS??

sheila888

terri....Not all Oncologists believe in Tumor Marker blood work.

TM test its not related either you had or didnt have chemo.

Mine does it every 4 months. Thats what he did from the beginning.

Sheila

Caya

When I was first diagnosed, my onc. sent me for a bone scan, transvaginal,pelvic, abdominal ultrasounds, breast MRI (which found a second tumour in my right breast).  He did not think the cancer had spread, but said he would send me for these tests to be sure.  I am glad I had them, at the time.

I'm over 3 years out now, and see him 2x/year.  He doesn't do blood work every time, the last time he did it he wryly told me the results were "disgustingly normal." He does not believe in tumour markers, at least not for early stage. I had a CT brain scan just after I finished chemo because I had had a 6 day headache that no painkillers could get rid of.  It was totally fine, and maximum doses of percosets finally got rid of that headache.

My gyn. sends me for a pelvic/transvaginal ultrasound every year, but I ask her to do it. I also get a breast MRI and a mammogram, one every six months - I get the MRI because a mammo and breast ultrasound did not detect my tumour(s) 3 months before I had a breast reduction in Oct. 2006 - my plastic surgeon found and cut out the first (1.8 cm.) tumour. Big dense premenopausal boobs - subsequent study found that dense breasted women are 4 -6 x more likely to get BC.

I know my onc. would send me for any tests I would ask for, but quite frankly, unless something is bothering me, I don't need the scanxiety.

Harley44

momand2kids

yes, I really only worry around the time of my onc visits...   even though, he never does anything...

terrij152

I'm on the every 6 month plan with my onc...  I was supposed to go to once a year, after my 2 yr. mark, that is, 2 yrs. after I finished chemo.  Only  in December, when I saw him, I asked and he said:  well, you are so nervous, and you always have a long list of questions, so... yes, you can keep seeing me every 6 months....

Harley

2Hands4me

No scans, no tumor markers, no oncotype - my onc says they are not indicated for stage 1. I admit to having some reservations...... I'd like also to KNOW that the scans and TM are negative. But does it warrant the time, expense and radiation exposure? And even the high tech scans are not 100% accurate.... I will try to continue to trust God to direct my onc. in catching any reoccurance. I understand how you feel though, Harley, but just can't justify insisting on going against my onc. God is in control and knows what is best for me. He alone knows with 100% accuracy if there is one cancer cell somewhere and IF or when it will develop into something more!

momand2kids

terri

my onc does not do blood tests either-- she prefers the full exam and patient history--- I agree with her... although at first I was concerned.... but I really so want to move on---- this whole experience is starting to recede for me.  I will comply with the tests and the visits, but no more than that.  At this point,there are 6 check in points a  year for me (mri, mammogram, 2 onc visits, gyn and pcp) I figure that is enough.  can't really do much more

Harley44

2Hands4Me

Yes, I know that GOD is in control... but now, the drs. make the decisions...

Do they examine you without clothes on??   My onc examines me, fully clothed.  In December, he had me raise my arm, and he felt my underarm...  where the lymph nodes were removed... I'm sorry, but you can't feel ANYTHING, with clothes on....  another thing that makes me wonder...

Harley

carolinachick

I haven't had any bloodwork since chemo finished, other than checking my counts about 10 days after my last infusion.  I see my onc every three months, but those visits will start being spread out more once I get three years out from diagnosis.  I am undressed from the waist up during my checkups so that he can do a breast exam.

Ezscriiibe

First of all, everyone, congratulations on your progress through bc! I can't wait til *I'M* 1, 2, 3, 4+ years out on this beast and posting!

I'm not sure what, if any, additional scans I will be getting at this point. My rad onc mentioned that he wanted to do an MRI. But I haven't met with my med onc yet.

My BRCA1/2 test came back negative for the mutation, but, and this is a HUGE "but" (I mean besides the one I'm sitting on. . . ) my paternal grandmother died of bone cancer, and, believe it or not, THAT cancer dx scares me much more than the BC dx ever did.

I would completely fall apart if something turned up in my bones. So, on the one hand, I want to see, on the other, I should probably just let this fear go and stop letting it haunt me!

Michele

otter

Did I say this already?  I've been seeing my BS for my mammogram and recheck once a year, and my med onco twice a year, with approx 4-month intervals between the two docs.  After my next onco recheck this spring, I'll be on a twice-a-year rotation, with my med onco alternating with my BS.  They're at the same cancer center, and they share all the results and records.

For both the BS and med onco rechecks, I'm undressed from the waist up and wearing a hospital-type gown.  Both docs do a careful exam of my scar line and "good" boob, and they both palpate everything from my collarbone to my waist (practically).  There is no skimping or hurry-up -- they're really thorough.  Both update my med history each time.  My BS goes over the results of the latest mammogram, which I have an hour or two before the BS recheck.  I already know the mammo results by the time I see the BS -- we wait in the waiting area after the mammogram until the radiologist comes out and gives us the results (hopefully, with an "all clear! -- see you in a year!").

otter

lisa-e

Harley, my onc examines my mastectomy scars, chest and armpit area every time I see him.  He is thorough.  My surgeon is also following me, although at this point I see him once a year.   If you are not being followed by your surgeon and getting exams from him, I would be nervous about the cursitory exams you're getting from your onc.  They are inadequate.

Harley44

yes, well... I DO see my surgeon ONCE a year, and yes, I am undressed from the waist up, and he feels my foobs...   I don't think it is more than a cursory once-over, though...  maybe I'll insist on a more thorough feel up next time...

Harley

terrij152

Thank you all ladies, I feel better that I'm not the only one not getting blood work each visit.  My breast surgeon has discharged me since I had my BMX.  She said I'd be followed by my oncologist.  He does a full exam and I am undressed from the waist up.  He check all my lymph nodes, my foobs, listens to my heart and then my lungs. 

Again thank you for your reassurance!

swimangel72

Terrij - my oncologist does check my blood before each visit - he looks at tumor markers, at my Vitamin D levels, B12 levels, liver enzymes, white and red blood cells and other things I'm forgetting. It was helpful having the Vit D levels checked - mine were very low so I'm now taking vitamin D3.......there are many studies showing women with low Vit D levels have a higher rate of recurrence. Hope this info helps you.

Harley44

swimangel

yes, there are lots of things they are just now learning, like the vitamin D levels... my onc only checked them when he switched me to Femara, because I think we may have more problems with se's if our vitamin D levels are low.

My onc doesn't do tumor markers, but he does blood work at every visit now, every 6 months. 

Harley

Sukiann

Harley, was your vit. d level low?  I asked my onc. about the level.  I told him I was taking 2,000 (don't know if it's iu or mg or what) per day.  He said that was a hefty amount but was ok to take.  what amount do you take?  He never said he would test the level.  He did take my liver function though.  I don't know if this is because I'm due for a zometa infusion and an iron infusion next week.  I can't believe that I didn't ask him. 

Harley44

Sukiann

I had my vit. D levels checked twice, once by my primary care dr... they were 58  he thought that was GOOD...  and my onc checked them and they were 38, which is NORMAL, but LOW NORMAL...

So.... I'm taking 6000IUs per day...   for about a month and I just decreased to 4000IUs....  I need to be retested but don't think either dr. will do it... they think I'm NORMAL...   UGH...

Good luck with your dr....

Harley

autumriley

I was just diagnoised in Dec. I asked for a PET die to fear , family hx of cancer and with the idea that

I wanted to not just treat one area if I had cancer elsewhere. My first dr. said no. I went for a secondary consult and she ordered one. No other site noted in body. That test was done from my eye brows to my hips.

I am scheduled for surgery but they will run a test on my lymp nodes prior to surgery. The first test gave me a false sense of relief. It seems like there is always one more test!

Harley44

autumriley

Welcome to this wonderful group of women.

I guess the dr. wouldn't do any scans for you, since you hadn't been dx'd yet... you see, they need to check your lymph nodes to be sure what stage your bc is. 

I still wonder about all this, since my drs. told me that cancer can jump to another area of the body without getting in our lymph nodes. 

Harley

Jaimieh

I had a bone scan, CT, CT with contrast (3x), x-rays, breast MRI, brain MRI and a bunch of other test.  Most of it was done because of other issues. 

Sukiann

I asked for the scan.  I'm getting it this friday.  I'm soooooo nervous.  You just never know.  I guess that's life.

BTW, it's a pet scan, not a bone scan.

DaylilyFan

Very interesting thread.  (Otter, thanks for the scan best-practice update.)  When I learned that my surgeon had removed not only 3 sentinel nodes but also one non-sentinel node, I thought that was over-kill.  Now I'm glad.  Better to check too many than too few, right? 

Harley44

Daylilyfan

My surgeon took 16 lymph nodes out and they were ALL CLEAR!  I think it is better to take MORE than not enough.  Although, either my surgeon didn't know how to do the sentinel node bx OR he probably didn't think it was good enough...  all these are so new...  I just wish they could put them BACK once they checked and found out they were ALL OK...  I want mine BACK!!   LOL

Harley

Sukiann

I wish I could have mine back too Harley!  If they take too many it puts you at risk for lymphedema.  Actually, if they take even one you are at risk.  I have very, very slight lymphedema and believe me, you don't want even a touch of it!

skeetur

My oncologist does CT scans and bone scan yearly, thus far.  My insurance wouldn't cover (couldn't justify) PET scan.  I was diagnosed with stage Ia three years ago.

 Kathy

Harley44

Sukiann

I had a mild case of LE also, after a stupid chemo nurse gave me a NEULASTA shot in my LE arm...  a week or so later, I woke up with a PUFFY hand!! 

The LE therapist kept telling me that my case was NOTHING... she has seen alot WORSE cases... but STILL... I wanted it to be back to NORMAL...

Sukiann

Harley, I hear ya!  Any swelling is awful.  I had to get my rings resized.  For a while I couldn't wear them (I told my hubby that the men would be after me if I didn't get them fixed! hahahaha - who would want an overweight bald woman with 1 1/2 boobs!)  Actually the le is under my arm, around my back and on my chest over my breast.  It is VERY slight but annoying and it hurts because it's tight feeling.  Anyway, the specialist showed me how to manually move the fluid.  She said that if it gets bad to call her but I actually did it the other day.  After last weeks snow shoveling it acted up.  I now know I need to be very careful of over doing it.  I kept doing what she showed me to do and it really did help.  I was so relieved that I didn't have to go for treatment and that it didn't get worse, only better.  Goes to show you that it can really get out of control if you don't be careful.  I would have been so mad at that nurse and the therapist!  Just because yours isn't bad doesn't mean that it should be minimized.  We just want to be back to normal - and of course that's never going to happen - mentally or physically.

BTW - the original purpose of this thread was to discuss getting scans for stage I or 2.  I did get my scan and they didn't see anything!! Hooray.  I can tell you that even though it is not protocol for stage 1 or 2 to be scanned it is a HUGE weight lifted from my shoulders (for now) to know that the cancer hasn't spread.  Of course we know that it could happen in the coming years but for now I feel so much better.  I guess it's just not worth the cost to scan everyone when they find such few that have gone on to have mets at this stage.  But.... still, if you are one of those people then it is worth the cost.   

CrystalLocket

Wow, I have been wondering the same thing about PET scans. I am barely stage two, at least thats what I was told by my surgeon.  My onc says to just wait until something happens, some symptom. That seems ridiculous because by the time its noticable its late. I wish I could find a doctor that would test at least every 3 to 5 years.  About the lymphodema, I have it in my right arm. I went for therapy to the local hospital for a while and used up my insurance alottment for the year.  This year I requested to purchase a compression machine from my insurance to use at home and they covered most all of it.  It is the kind they use in the therapy room and helps keep the lymphodema down.

stormchaser333

I started out stage 2  but went to stage 3 when 5 of 20 nodes were positive.  I finished chemo and radiation in July 2009.  I kept pestering my onc for a PET scan to make sure all of the cancer was gone.  What a nightmare!!!  First a nurse calls me and says my cancer has metastisized to the bones in my hips and pelvis.  What!  Then I asked what other tests would be done and she tells me nurse practitioner says only a blood test. Onc was on baby leave.  Finally get ahold of onc after 5 days of hell. 

She says that she needs to see scan and nothing is for sure.  Saw her Monday and she shows me PET scan is lighting up 12 areas from shoulder to rib to hips.  She says this is odd because trip neg. usually comes back in organs unless cancer is now estrogen pos.  She said it is suspicious but radiologists always say it is bone mets when scan lights up. 

So got a bone scan and she tells me that there is nothing showing in the bones except for left shoulder and hip, which I have injured before.  She seemed surprised.  Next I will be doing an MRI and possibly a bone biopsy.  Tumor markers are negative an am still awaiting circulating cancer cells test result.

Now I know why they say not to do tests unless you have symptoms.  While I would want to know as soon as possible if my cancer is back, this back and forth is killing me.  I am hoping for the best.  If all ends up well then no more scans for me!  I am also taking 50mg of Boniva a day for a clinical trial, which I have heard could be causing false positives.

Anyone else have similar problems?

Thanks

dreaming

I am a long term survivor,I get a bone scan every other year or if I have any discomfort; had several MRI, brain,body, specially when I was diagnosed with PMR, to discount bone cancer;  I see a Dermatologist every year just in case.

When I moved I told  my  new doctors when and what to order, and gave them the plan my team had in the city I moved from. So far so good.

Harley44

Sukiann,

HOORAY!  Glad your scans showed N.E.D.!  May you dance with NED forever!

stormchaser,

I'll be thinking of you... hope everything turns out ok..  Sometimes, I hear there can be false positives.  I didn't know about Boniva causing a false positive... that's good to know.

I guess since there are so many factors to consider with these scans, maybe it's best that I don't get them.  I'd be a nervous wreck, and I'd be the one that would get weird test results, and no one would be able to say for sure whether it had spread or not.

Dreaming,

Thanks for posting...  congratulations on 16 + years NED!!

Harley