Refusing radiation treatments?

Beesie

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!

Anonymous

Thanks to this forum I changed doctors after the 3rd lumpectomy and went to a large breast cancer center in Seattle.

My local doc said that an MRI doesn't tell you anything about DCIS. Went to Seattle and the first thing they did was an MRI. Indeed, the right breast had several areas of DCIS.

When I met with the Seattle breast surgeon her recommendation based on my presentation was to do a mastectomy. At that time I elected to do a bi-lateral mastectomy because I didn't think anyone would get me back if the other breast developed DCIS.

So, yes, with the decision made by the circumstances it was much easier.

To my local doctor's credit he did the sentinal node biopsy with the first lumpectomy. Thankfully there was no lymph node involvement.

The best thing that happened was the encouragement on got on this board to go to a specialist. The decision to go to Seattle made the difference in how I feel about this whole situation. Yes, it's a hassle to have docs 5 1/2 hours away, but so worth it.

Bobbin

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

Radiation damage:

http://www.leiomyosarcoma.info/raddiscuss.htm

Beesie

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. 

Anonymous

Okay, so Beesie my 3 lumpectomies only showed DCIS. However one month later when I had my mastectomy two areas of microinvasive cells were picked up that weren't picked up before. So that would be an example of how DCIS can morph into IDC ?Beth

I will be meeting with my oncologist sometime soon. I have questions for her and this is one of them.

julz4

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

I felt pretty confident in getting rads after my path report showed 2 tiny spots of dcis that were not picked up before, still within margins tho.   

But when I had my yearly eye exam, it showed I had dark cataracts and my eye pressure was elevated - both of which i did not have last year - I did not know that rads could cause this.  

Infobabe

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

Anonymous

I am curious as to why none of my doctors have talked either radiation or chemotherapy at any point on my BC journey. I will be meeting with my oncologist again, hopefully soon, and will ask her about that.

One of the best points that is made clearly time and time again on this site is to remember that each case is individual. I think that stance really contributes to the high standards and integrity of this site.

Kudos

NSJ2

Hi Shayne

You had "Internal" rads, yes?

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

NSJ2

proudtospin

my diagnosis was DCIS, hi grade, the docs recomended rads and aromasin as followup

do I have side effects of either? bet I do but I am also clear of cancer after 4 years so you need to make a choice

I go to the gym, 4 times a week, eat heathly and do any "complementary" treatments that I hear off

My docs are from 2 dif hospitals in NJ and include the best in state surgeon

chemo, I asked, My onco said not recomended unless I wanted to loose my hair~~

all these were difficult but grown up choices that we all need to make

NSJ2

Hi Beth

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

NSJ2

bdavis

Beth.. I think chemo and radiation weren't offered to you because you had DCIS AND a MX... chemo is only used for systemic control and yours was contained... and radiation is for local issues, but you had a MX.

Shayne

  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.  

voraciousreader

Shayne.. I have heard of the possibility of TOTAL BODY RADIATION being suspected of causing cataracts, but know of no other radiation causing cataracts, except of course, the radiation that we get from sun light. I am extremely concerned about the causes of cataracts because I am young too and have them. There is some evidence that Tamoxifen can cause or make cataracts worse. Since my sister who is also young and has cataracts as well, and doesn't take Tamoxifen and never had radiation, the doctor thinks our cataracts are caused by genetics. Furthermore, you should find out precisely your cataract score. The number lets you know how bad the cataracts are and at what point you would be a candidate for surgery. My cataracts have progressed over the years, but at points have remained stable. And while I am especially bothered by them while driving at night, I am presently not a candidate for surgery.



My eyes have always been sensitive to sunlight. Wearing sunglasses morning to night protects the eyes. Lubricating eye drops also help during the day. For night time driving, the doctor recommends Visine drops. Fluorescent lights are also a no-no. They make the eyes work harder.

Shayne

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.  

Scottiee1

Shayne.....just want to say that since Infinished rads at the end of May I have noticed

a lot of eye changes.....extremely sensitive to light now, had a lot of dry eye at the beginning, so went to see my eye specialist and I now have the beginnings of a cataract

in one eye. NOW, I am 65 so you could say the cataract is due to my age ....not sure.

Rockym

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.

Beesie

Beth, with your two microinvasions, assuming that they were both true microinvasions (i.e. areas of invasive cancer that were no more than 1mm in size), your diagnosis is no longer Stage 0 DCIS.  It's Stage I, DCIS-Mi.  That's my diagnosis too.  The treatment however is almost always the same as it is for pure DCIS.  The one exception is that with the microinvasion, it becomes necessary to check the lymph nodes, whereas it's an option for those who have DCIS. 

Chemo is not part of the treatment protocol for DCIS-Mi. In fact chemo is not recommended for many invasive breast cancers, unless the invasive tumor is large or particularly aggressive (based on hormone status or Oncotype score).    

As for rads, usually rads isn't required after a mastectomy for DCIS.  The exception is if the margins are positive or extremely small.  So if you had acceptable margins after your MX, there's no need for rads. 

With all that said, it sounds as though your treatment was consistent with currently accepted treatment guidelines for Stage I DCIS-Mi. 

NSJ2, I know that you are in the process of making some of your treatment decisions, so be careful to not compare your situation to Beth's.  You had a very small area of grade 1 DCIS, with huge surgical margins.  Beth had grade 3 DCIS and a couple of microinvasions of IDC.   If there is a 0 to 10 DCIS scale, your diagnosis is at 1 or 2, whereas Beth's diagnosis is just off the high end of the scale, because of those microinvasions. 

Scottie, your point about the cataract possibly being because of age is a very important point.  Of course, age might not be the cause but we always have to remember that many of the side effects of the treatments we get are the same things that happen to us as we age.  I'm not on Tamoxifen but I recall one time reading a discussion thread on this board about the side effects of Tamoxifen. There were all sorts of complaints about all sorts of problems. I remember thinking that I had most of those same problems, not because of Tamox but because I was just entering menopause.  I think that we do tend to ascribe too many side effects to the treatments we have, rather than realizing that some of them are just things that would have happened to us anyway.  That's not to say that there aren't real side effects to rads or to Tamoxifen, but we need to be careful in putting too much weight on anecdotal examples, vs. looking at the studies that compare a control group to a group that's had the treatment. 

proudtospin

 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!

Shayne

hmmmm......Last years eye exam showed none of these issues.  Then all of a sudden I have high eye pressure and more than early stages of cataracts?  Not sure I agree with you that I should just think, "well, this would have happened in 10 or 20 years anyway...."  Then again, it does no good to blame my treatment.  My treatment may save me.

Anonymous

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

Anonymous

That's an interesting question. On the path report it said " weakly positive, " I met with the oncologist following my surgery, but the surprise came with the microinvasions and she wanted to see some slides from my original lumpectomies. I have a call in to see where we are in that process. I expect I will be meeting with her soon. My sense is that with the mastectomy since the cancer had not spread I will not need any medication.

Beesie

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. 

Anonymous

Beesie,

Thanks for the additional information.Given what you have said, I think I would opt not to take the Tamox.

The information you have provided will enable me to be a well versed patient.

I will report back the results.

I go to Seattle for my second "fill" on Tuesday.

Beth

NSJ2

RockyM

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

proudtospin

Le is lymphodemia,

surgery and radiation that touch on the lymph glands make us al sustiple to developing it now or later in life, no cure but with care it can be managed

Rockym

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.

bdavis

Beth.. I want to give my opinion on Tamoxifen.... since you had a microinvasion, not pure DCIS.  If your tumor was ER+ it feeds on estrogen. Your microinvasion means that rogue cells might have escaped and are somewhere in your body. Those cells have receptors looking to feed on estrogen to survive and grow. The Tamoxifen basically caps those receptors so that the cells can't feed and eventually die. I had MX and chemo and I am taking Tamoxifen. The drug is not a big deal at all.. hot flashes now and then. Certainly easy enough and if it means a rogue cell dies off, then I am all for it. Do note that I am 98% ER+, so if I were 20% ER+ I may have a different opinion.