Refusing radiation treatments?

Beth, I've learned from experience that it's really easy to say something in this forum and have it be mis-applied. This being the DCIS forum, there probably aren't that many women reading who have IDC, but I've found that anytime I say something that's specific to DCIS and that doesn't apply to IDC, someone with IDC will come along and assume that it does apply to her situation.  And then I have to clarify. It's happened enough that these days I always try to include all the "buts" and "only ifs" and "not ifs" etc. up front.  I could say that this is why so many of my posts are so long  .

Interesting that you had 3 lumpectomies trying to get clear margins.  Did you ever have an MRI?  I gave up on trying for clear margins after my first surgery, when I had an MRI and it showed that my breast was full of "stuff".  My surgeon couldn't say if the "stuff" was all more DCIS or not, but we both guessed that it was. If not for the MRI, I certainly would have tried a lumpectomy at least once more, although in hindsight I know that it wouldn't have worked out.  There are certainly some advantages to not having a choice about some of these things!

Thanks Beesie!  That does help. I really don't know what scare me most at this point!  silly for me to still be so conflicted.  I know that I have ( we all have) the higher risk that it MIGHT come back as invasive...and that does scare me!  But why does it come back as invasive?  I have to say, I'm still confused about DCIS.  It's always non-invasive...what makes it become invasive.  Silly question I'm sure.  I suppose it all comes down to cell divison and when it happens. 

I forgot to mention, the RO has agreed to a 3 week protocol....I'm sure just to get me in there.  And this RO is a leading expert in DCIS in Canada. 

lionessdoe, as the top of the page you linked says, "LMS is a rare cancer".  I think we all know that there are possible long term and serious side effects of radiation. No one denies that. The question is how often that happens.  Linking a website that talks about the serious side effects of rads without putting it in the context of frequency of occurance seems to me to be a scare tactic. 

Bobbin, think of DCIS as being invasive cancer that's been caught so early that it hasn't yet become invasive. I don't like the term "non-invasive" because I think it's misleading; I prefer the term "pre-invasive", which I find is being used more often these days.  

At the time that a DCIS cancer is discovered, the cancer cells are confined to the milk ducts and therefore the cancer is not yet invasive; DCIS cancer cells don't have the ability to move beyond the ducts and out into the body.  But as DCIS continues to develop, it has the potential to evolve to become invasive cancer.  Just one final molecular change and suddenly the DCIS cells are able to break through the milk ducts and survive and thrive in open breast tissue. And then the cell - the very same cell - has become an invasive cancer cell.  So DCIS is just a stage in the development of breast cancer.  And this is why a DCIS recurrence might turn out to be IDC.  If after surgery some DCIS cells are left behind in the breast, they can continue to develop.  So by the time the recurrence is found, while about 50% are still DCIS, the other 50% have already evolved to become IDC. 

Beth yes DCIS can & does turn into invasive cancer.  I had Atypical Hyperplasia, pre cancerous cells in my first biopsy.   Then an MRI showed my mass to be cancerous, which was first thought to be a complex cyst.  Then I had a second biopsy which showed DCIS.  The final path report from the lumpectomy had several micro invasive spots.  I caught mine right at the point of mine JUST starting to become invasive.  Just my opinion....but because of my grade (3) & also being TNB I did not hesitate to have Radiation!  But each case is different & should be done on a case by case basis!

Shayne, has any doctor suggested that this is rad related?

Hi Shayne

You had "Internal" rads, yes?

So do you think your cataracts and elevated eye pressure are a SE of those Rads?

NSJ2

Hi Beth

Just curious, will you be doing hormone blocking therapy? I see you are ER+.

NSJ2

  My opthomalogist thought it could be.  What else would explain my perfectly healthy eyes, suddenly having what she called "dark spots" on them.  That sounds pretty advanced.  And they eye pressure thing too - Ive never had these issues with my eyes before.  Im 54.  Night vision has gotten worse - this is when I most notice it.  

INteresting!  Ill find out my score.  AND get some visine.

Ive always been sensitive to light.  The doc first mentioned that it can be caused by a lot of sun exposure, but since my 20s, i have always been vigilant about wearing sunglasses, and I have worn prescription sunglasses since my 30s.  I dont ever go outside without them. Eye docs have always commented how healthy my eyes are.  My sister had cataract surgery, she also had BC and was on Tamox for about a 6mos-year.  During my dx and tx, I had a lot of testing done.......thats a lot of radiation.  I was v upset with this finding.  

Shayne, I was in perfect health before BC.  After treatment my body has changed tremendously.  My gut tells me NONE of this would have occurred for years.  My eyesight was perfect.  Heck, both my parents didn't use reading glasses until their 60s.  I had to buy my first pair of readers a couple of months ago.  It's a small change, but it happened.  I've also developed LE in the left breast and now I've got some weird things going on in my fingers.  They call it Trigger Finger.  Before BC I would just wait for things to go away, now I'm always scared they will be permanent.  I'm sure the eyesight thing is.

 Bessie, I agree that we all want to blame things on BC and its treatment.  I know a woman on another message board that proudly said after her initial diagnosis that the only med she was on was her arimidex.....fast forward 5 years and she takes cholesteral med, blood pressure med and at one point thought the had a thyroid issue.  She was diagnosed at 62 I think, so what is to blame?  I am much the same.  I had to hunt down a BIG little pill box as the usual ones not big enough!

Beesie, you are a marvel.

I am so happy my local surgeon did the sentinal node biopsy with my first lumpectomy. It was negative.

I so appreciate the wisdom and knowledge on this site.

I was first diagnosed on July 27th and between then and my BMX on October 17th life has been a blur.

Thank you, again

Beth, with the bilateral mastectomy, assuming that you had acceptable margins, your risk of a recurrence or the development of a new breast cancer is only about 1% - 2%.  So if Tamox. were to cut that recurrence by 50%, you'd at most get a 1% benefit from Tamoxifen. This is why Tamoxifen is not generally recommended to women who've had BMXs for DCIS. 

The difference in your case are the microinvasions.  And I guess that's where I misspoke earlier, since Tamoxifen might be another difference in treatment protocol for those who have microinvasive cancers or small IDCs vs. those who have pure DCIS.  Tamoxifen does reduce the risk of a distant recurrence (i.e. mets), and ultimately that's what we are all trying to avoid.  Those who have pure DCIS don't have any risk of distant recurrence. But the presence of even just a small amount of invasive cancer, such as the microinvasions that you and I have, opens us up to that risk.  With microinvasions, the risk is small - my oncologist told me that my risk was 1% or less.  So the benefit from Tamoxifen would be very small, but a small reduction in the risk of mets is a whole different ballgame than a small reduction in the risk of a local recurrence. For me, with just the 1% risk, I decided not to take Tamoxifen. What you should ask your oncologist is what she thinks your risk of mets is given the presence of the of microinvasions.  My guess is that your risk probably is in the same range as mine, so then the question is whether Tamox. is worth it to you for that small amount of risk reduction. 

RockyM

Sorry, but what does "LE" stand for where you say you developed in your left breast?

NSJ2, LE is lymphedema.  It can happen with surgery alone, with radiation or with any lymph node removal.  Doctors don't tell us about this and it is a very common complication.  I was being very diligent by asking my surgeon to only remove the minimal number of lymph nodes in hopes of avoiding the complication since I already knew about it.  BS felt like 6 were needed since my cancer was close to my underarm.  It's hard to say how my swelling happened (although I have a few theories), but as proudtospin said, we are all susceptible for life.  Typically ladies have their arms swell, but it can also happen in the breast and trunk.  My breast swelled 3 months after my last radiation treatment.  It was very upsetting after going through surgery, chemo and rads, but I've gotten used to it.