Follow Ups for Her2+

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my2boys
my2boys Member Posts: 339

Hello ladies,

I was just wondering what your doctors have recommended for follow ups after you complete chemo.  My doctor is recommending follow ups with blood work only, no scans.  I was told that the outcome is the same if they catch the mets early or not.  I always thought that I would be followed more closely and I don't know that blood markers are very reliable.  My doctor said she would do scans on me if I wanted them, but it was not what she normally recommends.

Any thoughts? 

Comments

  • LittleFlower
    LittleFlower Member Posts: 405
    edited March 2009

    my2boys,

    i just asked the same question a few weeks back on another forum.  It is THE QUESTION in my mind everytime i see my onc.  So for me, NO SCANS or BLOOD WORK unless i have a symptom of some sort.  at first this was hard to get used to, actually still is, but i really get anxious with scans, so for now i roll with it.  I think personally if there was some structured follow up i would feel better.  I actually just had a CT secondary to chest pains, and get results next week.  The thought of the scan, the day of, and then all the waiting takes alot of my time consumed by thoughts and worries, so for me less scans are better.  SOunds like your doc is pretty understanding .........just so you know, i was told NOTHING UNLESS SYMPTOMS...

    LittleFLower

  • lexislove
    lexislove Member Posts: 2,645
    edited March 2009

    Same here..

    I do bloodwork but no scans unless symptoms. Your onc will give you a physical exam ie, check the breast, underarms, colar bone area for enlarged lymph nodes.

    I personally don't mind NOT having scans...they cause more anxiety for me and the waiting is horrible. PLUS some times there are false positives with these scans which can end up doing MORE testing..more anxiety...blah blah...

    I have have had enough of radiation exposure to last me a life time...so I dislike scans right now. But if I needed to have one I most definatly would do one.

  • rosesinwinter
    rosesinwinter Member Posts: 70
    edited March 2009

    I am 18 months out from diagnosis and 9 months since radiation finishing.  There are no scans ordered per my oncology team either. Apparently studies show that metastasis is found a little earlier with scans but the prognosis and treatment is the same.  Their opinion is that scans represent more risk from the effects of radiation than the marginal benefit achieved.  I am sure that they would do them if I was concerned about any symptoms though. And actually I still will have a CT scan of chest in April due to pulmonary complications that I had in chemo; they want to check on the infiltrates and scarring. There really IS a detrimental effect from too much radiation also...

  • bethanybeane
    bethanybeane Member Posts: 334
    edited March 2009

    Has anyone had digital mammography --or ultrasounds --on top of ,or in lieu of, mammogram follow-ups.

     I was hoping for a close watch on the breast tissue itself.... I want anything that were to come back found WAY before there are ANY mets -

     Am I hearing from you guys that some doctors are saying that it doesn't matter if there are no mets yet -- if it comes back -- then there will be mets?

    I'm feeling kinda scared about the notion that the "outcome" is the same whether or not they catch the mets early....what is the "outcome" that we're talking about here?

    Deep breath. Sigh. Help. Bethany

  • lexislove
    lexislove Member Posts: 2,645
    edited March 2009

    beth....

    I only had an ultrasound when I was diagnosed. I asked about digital mammography and my onc stated that digital is good if you have denser breasts. Mine are more fatty..thank you Undecided

    I did have a mammogram this past October on the healthy breast..but it brought back so much anxiety while I was there I didn't ask about an ultrasound.

    Needless to say it was clear, but I think this fall at my next mammo, I will request an ultrasound as well. I'm also planning on doing aabdominal ultrasound to look at my ovaries and uterus, just to have something compare to if I develop fruture problems from the evil " tamoxifunk"

  • Sassa
    Sassa Member Posts: 1,588
    edited March 2009

    If you have a local recurence (in the breast or axillary nodes), you may be able to be treated and become NED.

    However, if you have a distant recurrence (Mets), you are Stage 4.  The disease is no longer considered treatable and the goal is to control the met progression (hopefully with some periods of NED).  The eventual outcome is death.

  • my2boys
    my2boys Member Posts: 339
    edited March 2009

    Thank you for your responses, ladies.  I underwent a double mastectomy, so follow up mammograms are no longer an option for me.  When I was diagnosed, I did have cat scans and a bone scan. 

    I'm sorry if I scared you Bethany.  That wasn't my intent.  This cancer is scary enough without adding to it.  The way my doctor explained it to me was that the treatment for Stage IV is the same whether they find the mets early or a little later when you begin to show symptoms.  Either way, they would begin treating it with chemo again.

    I think that lexislove's response makes perfect sense.  False positives are a real possibility with scans.  My doctor DID say that the nodes can light up on a scan for other reasons and I would be subject to node biopsies if this should happen. 

    I was just wondering if it made sense to do scans and catch them earlier, but I wasn't taking into consideration that the scans themselves can be expose me to radiation unnecessarily.  This is a difficult decision and I think I'm leaning towards following up with bloodwork and doctor examinations only.

    Little Flower - I hope that you get some good news next week.  By the way, did you know that St. Therese' is known as the Little Flower?.......smile.

  • rosesinwinter
    rosesinwinter Member Posts: 70
    edited March 2009

    Bethany- I am sorry that this scared you also!  I personally have this bad habit of always looking ahead and anticipating the worse scenario.  As I was going through chemo and reading several books on breast cancer, I started reading about stage IV and the prognosis. Fortunately, I had an experienced and compassionate social worker who sat down with me and talked to me about that possibility when I asked.  She pointed out that she had many stage IV patients who had lived for many, many years due to the advanced therapies available. As a medical professional for 30 years, I always thought that cancer was totally untreatable if it spread to the liver or brain.  But there is a woman in my breast cancer support group who had liver lesions removed surgically and a brain met reomved with gamma knife. I am definitely not a specialist at advanced cancer!  But there IS therapy even then.  Remember when Elizabeth Edwards was diagnosed with bone mets 2 years ago?  The media emphasized the poor, incurable cancer victim over and over. She is still here! Hugs to you all and good luck with your decision making!!

    lexislove- you were diagnosed the same week that I was...and with very similar pathology!  Hope all is going well for you at followup.

  • lexislove
    lexislove Member Posts: 2,645
    edited March 2009

    Hi Janet...!

    Congrats on finishing! another September Siren! Smile

    I was diagnosed Sep 14 chemo Sep 17 I finished my rads June 10 2008. Things are going a lot better for me now..thank you Effexor..lol.

    I go for my 3 month checks and have my Lupron injections and zometa every 6 months. The checks are very quick, most of the time we talk about things NOT BC related like vacations...and his Audi..lol.

    But soon as I walk out the doors I let a big sigh out....right now it feels I live 3 months at a time. But I'm sure this feeling will get better. My 2nd check is April 6.

  • plakatakr
    plakatakr Member Posts: 188
    edited March 2009

    I had my 1st follow-up mammo (digital) in Feb. I also had an ultrasound on the surgery boob. I had a lump that I thought was scar tissue. It wasn't, it is a Seroma. Nothing to worry about and will shrink in time. It may be from the surgery or the mammosite. As long as it's normal and will go away...I won't worry about it.

  • my2boys
    my2boys Member Posts: 339
    edited March 2009

    Janet - I just wanted to expand on what you said about liver mets.  My friend called me on Friday to tell me that her cousin who had liver mets from breast cancer has been NED for the past 5 years.  I guess that they were treating liver mets as long as 5 years ago!

    We have come a long way.

    Stay strong ladies.

    Anne

  • Brenda_R
    Brenda_R Member Posts: 509
    edited March 2009

    My first mammo after BC was a regular one and they had to use CAD to read it. The scar tissue and effects of radiation made it difficult to see clearly. The next follow up mammo, I made the appointment at a facility that uses digital and it was much clearer. They also did a US on a suspect spot, but it was scar tissue near a surgical clip. The last follow up was also done at the same place and it clean and showed that scar tissue was resolving. I will continue to have digital mamms as long as the insurance will pay for it.

  • bethanybeane
    bethanybeane Member Posts: 334
    edited March 2009

    thank you all for the posts that were reassuring.  I think I may look into digital mamms even if insurance doesn't pay. My sweet MIL said that she'd pay for that test if nec b/c she couldn't think of a better investment -- I felt so loved by that offer. And, it would be a blessing if we could all find the peace that passes all understanding in the fact everyone's eventual outcome is the same -- bc or not.  Peace to you all, Bethany

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