Stage II - No scans??

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SunnyCoconut
SunnyCoconut Member Posts: 350

Hi,

I was diagnosed as stage II this past December.  I'm curious becuase I did not have any Pet Scans or Bone Scans before surgery or chemo.  Now everything is finshed and I still have not had any scans.  My Onc says just CA 27,29 and regular bloodwork is all that is needed because I was only stage II with only microscopic lymph node involvement.  What do you think??

Comments

  • lago
    lago Member Posts: 17,186
    edited September 2010

    She might be right. I know my surgeon ordered scans before surgery but my tumor is much larger (at the time he thought 6-7cm) and he also though I would have lymph node involvement as well as being HER2+ (more of chance of metastasizing). He pretty much though I was going to be a stage IIIA. Everyone was surprised (but me) that my nodes wheren't involved. I'm officially a stage IIB.

    If it had metastasized he would have recommended chemo first.

    I think because of the size of your tumor and microscopic node involvement they likelihood of metastasis is very low. Did you ask him/her why?

  • SunnyCoconut
    SunnyCoconut Member Posts: 350
    edited September 2010

    He said if there were more lymph node involvement then he would recommend scans.  But I just want the peace of mind of knowing there is no other cancer anywhere.  I know the scans can't say for sure but I think I would feel so much better.  I want to call him and request the scans.  I don't think insurance would deny it, do you?

  • cathmg
    cathmg Member Posts: 278
    edited September 2010

    Hi, my onc said the same thing: no scans because of stage 2. And the tumor I had was quite a bit bigger than yours. He said if I had any symptoms, then we would test at that point.

    I had a chest XRAY before the mastectomy, but only bloodwork since then. My onc also stopped measuring tumor markers after my 3rd visit to him. Just passed 2 years...

    Best wishes,

    Catherine

  • CoolBreeze
    CoolBreeze Member Posts: 4,668
    edited September 2010

    Mine doesn't do scans either.  I think that's standard of care for early stage BC.  Statistically, finding it before you are symptomatic doesn't increase lifespan so it's not recommended for early stage.  The extra dose of radiation offsets the value of the test, I guess.

    When I'm done with herceptin, my onc will do tumor markers, he says, although he says they are not reliable either.  I guess our bodies are the thing that will tell us if we are the unlucky ones who have it come back.

  • KKing
    KKing Member Posts: 425
    edited September 2010

      I was diagnosed stage 2 , 1 lymph node.  I was put through all scans before the chemo.  I dont know if that is just standard here in Canada.  The onc explained that they check the lungs with a chest xray.  An abdomen ultrasound to check the liver and a full bone scan for the bones.  Everything was negative...thank God.  Just wanted to share this with you.  

  • KinAZ
    KinAZ Member Posts: 180
    edited September 2010

    i am also a stage 2 with microscopic lymph involvement and was also told scans would not be standard follow up care...i have had a few scares and they were very quick to order the appropriate scans....no bloodwork because there are too many false positives, my onco said it is not a reliable indicator and creates unneeded anxiety.   i notice that you are a triple negative, and i think that might change things a bit, maybe check the triple neg thread, and be sure to discuss this with the onco..best of luck

    karen

  • ruthbru
    ruthbru Member Posts: 57,235
    edited September 2010
    If you are Stage II, no nodes involved; if there WERE anything out there, it would be too small to detect with the present technology Frown.
  • jlee2511
    jlee2511 Member Posts: 36
    edited September 2010

    Good evening,

    I just posted a simular question on another forum. Here is my story, It is actually my mom who has the cancer. She was diagnosed in may of this year with stage 2A, grade 2, (mitosis rate of 1), node neg, er and pr+ and her-. Her oncologist @ UCSF said no further testing needed. She did DD AC-T. Just last week she met with the radiologist to start rads. He said he is "old school" and wanted a ct of the chest, abd and pelvis along with tumor marker test for base line and staging reasons. Well, today we got the results of her tumor markers back and they are elevated to 45!!!

    Normal is under 40. I feel like a maniac i'm so racked with worry... The radiologist said not to worry about it. (Yeah Right) She has her ct scheduled for thursday. By then I will have aged 40 years! So back to the subject on testing- I dont know how I feel about it. It sure can cause ALOT of anxiety!!!! At this point I think I like the Idea of just waiting and going off of symptoms. Especially if it is true and dectecting mets early doesn't change life expectancy. (at least that's how I feel tonight!)- Best of luck and lots of prayers-Jenny

  • TexasRose
    TexasRose Member Posts: 740
    edited September 2010

    I haven't had any scans either and I'm told that is standard practice as I had no lymph node involvement. They tell me that as long as I'm asymptomatic, there is no need. I have to admit that a voice screams in my head, "But I was asymptomatic when I had breast cancer!" My onc also doesn't do tumor markers. He says they are unreliable and an unnecessary stress on the patient for no valid reason. I have no symptoms of anything. But every little ache and pain still scares me to death. I'm only about a year out from treatment ending. I hope it gets easier over time.   

  • mamaof3bugs
    mamaof3bugs Member Posts: 198
    edited September 2010

    When I was diagnosed I went to the oncologist here in my 'smallish' hometown.  I had a MUGA, PET and breast MRI.  I was scheduled to have a brain scan but canceled it because I ended up getting my port that day instead...after we found out that the cancer was localized I sought a second opinion at a large cancer center in Seattle.  Once meeting with the drs in at SCCA I decided to transfer care to there and started my chemo almost immediately.  After talking with my onc, she explained that I would not have had any scans had I started treatment there because I was a stage IIa.  Now that I am done with chemo and will be starting rads in a few weeks I won't be having any scans, just blood draws with TMs.  I think that with early stage BC the doctors are less likely to do scans.  I am also a TN so I understand your concern, I am hoping that life and anxiety get easier over time :D 

  • SunnyCoconut
    SunnyCoconut Member Posts: 350
    edited September 2010

    Thank you everyone for responding.  I feel a little better at least knowing that there are others in my unscanned boat!

  • ruthbru
    ruthbru Member Posts: 57,235
    edited September 2010
    One thing about tumor marker tests; many doctors don't use them as they are very non-specific and the numbers can jump around a lot (and if they are low, it's not an absolute guarantee that you're OK either). All that being said, my doctor DOES order them. He feels that it is a way to flag potential problems early. If the numbers were to come back crazy high, then he would order other tests.
  • melania
    melania Member Posts: 117
    edited September 2010

    I am also newly diagnosed , I am 38 and my tumor is 2.7 centimeter , grade 2 ER /PR+.

    I am still little bit confused about the staging part. If they haven't done any scans how do they know u r stage 2 ????? i mean other than lymph node involvement isnt that the ,ets to liver etc make the decision what is the stage ???

    The surgeons told me stage 2 but i havent done any bone scan and pet scan or lymh node biopsy yet . So how can they know i am not stage 4 ???

  • CoolBreeze
    CoolBreeze Member Posts: 4,668
    edited September 2010

    Melania,

    Staging is done on the tumor size and lymph node innvolvement.  If a cancer cell did escape and lodge somewhere, you could be stage IV but it might be a few years before you find out - the tests aren't sophisticated enough to look that deep.  

    They go by science and statistics.  Statistically,, women with stage II with your features are unlikely to have metastatic cancer - it's a very small percentage who end up that way.  There is no point in introducing radiation and unnecessary tests with lots of false positives on a woman who is probably cancer-free, and if who isn't, the cancer is too small to detect anyway.

    So, you just have to believe you are stage II and once your treatment is done, you will never face cancer again.

    The hardest part about this disease is never knowing for sure.  Well, the second hardest part - the hardest part is knowing you ARE stage IV already.

  • lisaattheshore
    lisaattheshore Member Posts: 110
    edited September 2010

    Stage and grade are different as well.

    I had a stage 1 cancer.  It was expected to be a stage one. We knew the + and - already and the grade.  I did have a PET scan before surgery. 

     I don't know if there was any contributing reason for doing the scan.  Insurance did pay for it.  The only things I can think of there are that when I had the cancer, prior to surgery, my blood test marker was in the normal range.  And my tumor did not show on the mammo.

    I was kind of hoping they would do another scan sometime after treatment was done.  Will try to ask when I am there. 

  • marjie
    marjie Member Posts: 1,134
    edited September 2010

    My surgeon did not order any scans and said it would just depend moving forward whether my medical onc will order any or not.  She was more concerned with testing my heart function before I start Herceptin.  To be honest at this point, I don't know if I could handle the stress/worry of the scan results although my SO kept saying "wouldn't you rather know??"

  • ruthbru
    ruthbru Member Posts: 57,235
    edited September 2010

    melania, if they haven't looked at the lymph nodes yet, they really can't, for sure, tell you a stage; either it's his/her best estimate or he/she meant GRADE 2 (medium growing rate).

  • reese1234
    reese1234 Member Posts: 6
    edited September 2010

    My breast surgeon is the one who diagnosed my TNBC.  All I knew before surgery was that it was a highly aggressive tumor (2.2 cms).  Right before my mastectomy, I had a Sentinal Node Biopsy and he only took 4 nodes out.  They were all negative.  Mine was Stage llA, Grade 3.   Right before I started chemo, the oncologist sent me to have a PET scan which showed the cancer had not spread anywhere else.  After I finished chemo and went back for my 4 month (turned out to be 6 months) check-up, I was a nervous wreck and my oncologist ordered another PET scan.  It was a year after the first one.  It's funny how doctors are different in the different areas of our country, even our continent.  Best wishes to all.    Reese 

  • Racquel
    Racquel Member Posts: 63
    edited September 2010

    My former onc never did any bloodwork or scans.  Notice is said former.  I kept asking him "how do I know for sure".  He kept saying "you're fine".  Well 2+ months ago I got really sore so a couple weeks ago finally went in.  Again I heard you're fine but if you want I will check again in a month.  Not good enough!  I went to new onc who asked why I hadn't had an mri or anything.  I told her old onc said I was low risk based on whatever factors.  She said not with my family history and ordered an MRI.  Low and behold there's a spot on posterior side where the BC was.  She called me Monday to say that had old onc done MRI before surgery LAST JUNE he'd have caught it.  I hope it's nothing but at this point I'll take anything she tells me.  She said I needed to get in for first US appointment I could get so that's scheduled for Tuesday.  I told new onc that it'd be close to impossible because SNB was neg.  She said not true as it can settle further in then pop up.  I'm only 17 months out I told her.  She said she see's woman with recurrence within a year.  She's not too reassuring but she also doesn't pull any punches or sugar coat anything.

  • Shrek4
    Shrek4 Member Posts: 1,822
    edited September 2010

    I'm a Stage IIb grade 2. I had a PEt/CT scan in February (between the mx and the chemo and another one after I finished chemo - beginning of August. Also, both times I had the tumor markers checked. My onc said that I need to get a PET/CT scan before chemo to make sure that there is nothing else there, and if it was, to have a reference for the after the chemo time. Both scans came back negative, tumor markers 3 and respectively 4. I was amazed my tumor markers didn't go up, as they usually go up with chemo (as they measure dead cancer cells, of course they'd go up) and then I realized "whew, that means there were NO cancer cells to die from chemo". Made me feel soooo much better.

  • shazza47
    shazza47 Member Posts: 2
    edited September 2010
    the only scan i had was an ultrasound and after surgery there was still tiny cancer cells there and the ultrasound didnt show them, so now i have to have my breast removed...... request the scan surely they cant say know, if i was in your shoes i would request a scan.... sharon qld Smile
  • shazza47
    shazza47 Member Posts: 2
    edited September 2010

    Hi, mine was a grade 2 cancer and they thought they got it all out but the results came back that there are still tiny cancer cells there but none in my lymth nodes, and now he says my best option is a mastectomy,,, how did you cope after yours.... shazza47

  • ruthbru
    ruthbru Member Posts: 57,235
    edited September 2010

    Why can't he do a second lumpectomy and try to get wider margins? (I ask because that is what I did).

  • SunnyCoconut
    SunnyCoconut Member Posts: 350
    edited September 2010

    Shazza - I was so relieved after my mastectomy.  I was surprised at how I reacted before the mastectomy.  I wanted that breast off so bad - I couldn't stand walking around with that cancerous boob on me!

  • lago
    lago Member Posts: 17,186
    edited September 2010

    reese1234 your BC might have ordered a PET scan because triple negative can be aggressive. I know in the case of HER2 there seems to be a bit higher chance of metastasis. I have a feeling they don't base all this on stage alone.

  • bdavis
    bdavis Member Posts: 6,201
    edited January 2011

    I asked my oncologist today about PET or CT scans... how do I know I am only stage II??? And the answer is the same as those above, that the risk of extra radiation doesn't merit the scans. Even having micromets in my sentinel node didn't warrant the scans, he says... He also said that my chemo is for killing any floating cancer cells. So, I believe him and will just go scanless into my chemo.

    On another note, I did have a pelvic ultrasound to check my ovaries, and had the CA-125 test. Blood test was borderline, but unreliable, and ultrasound was clear.

  • Tabatha00
    Tabatha00 Member Posts: 133
    edited January 2011

    When I was first diagnosed with cancer (triple negative) I had CT scan, bone scan and chest x-ray.  No PET because my oncologist think the PET scans have too many false positive readings.  My tumor was 2.5 cm.  It was after I had the CT scan that it showed I had a 2 cm tumor dangling from the bottom pole of my kidney.  I had a biopsy and bingo.......kidney cancer.  However, it was grade 1 and slow growing.  I had the tumor removed and no further treatment is needed.  The radiologist who performed the biopsy called the kidney cancer an "incidental cancer" because most people don't even know they have it until they have scans for something else (in my case breast cancer).  

    Fast forward and I'm done with chemo and radiation.  I was dx on May 22, 2009.  I finished chemo January 22, 2010 and finished radiation May 24, 2010.   My oncologist does NOT order scans of any kind after treatment is over. He also doesn't do tumor marker tests because he said those are highly unreliable.  I'm FINE with this.  I think ignorance is bliss.

    HOWEVER, my urologist DOES require scans every year.  I have to have a CT scan and chest x-ray March 21.  I think to myself.  If I hadn't had that damn kidney cancer I could live in denial forever and not have scanxiety!!!!   I asked my urologist what the chances are that the kidney cancer will come back and he shook his head and said "not likely at all but anything is possible in medicine".  I have thought so many times about not having the scan done in March but is that me being irresponsible????   Probably!   DAMN DAMN DAMN!!!!!!   I DON'T WANT TOO!!!!!!  

    I know I should.  God forbid if the breast cancer ever decided to rear it's ugly head again and I could have caught a recurrence earlier I would never forgive myself.  I just pray pray pray for clear scans on March 21 so I can not worry about tests for another year!!!!!!

    Tabatha

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