DCIS questions and confusions, personal stories and issues

so i got part of the lab report saying the cancer is DCIS only not invasive.(PHEW!)  since i have both LCIS and DCIS the margin report is not done yet. that will be in by Thursday of this week.  all in all good news. worst case scenario is that i need a second lumpectomy.  i will be doing radiation in the Fall 5 days a week for 6 and a half weeks....

thats what i know...

 half down and half to go, breathing......

the IS in DCIS is in situ

Terri -- yup, "how low do I want my risk of recurrence to be" -- that is the million dollar question.  All of us have our own risk tolerance, weighed against our fear/risk of treatment side effects.  Personally, I was willing to live with 20% (1 in 5 chance), but higher than that I was uncomfortable ... but there are many women who feel uncomfortable even at 1%.  

Good luck, the decision-making is always so tough. 

Teri....calming thoughts and I know you will make the choice that is right for you.

good luck with the decision, gee rainey weekend in the northeast so maybe good time to sit and ponder

Good news Terri.  I took about a week to decide whether to go for rads or not - I found it a difficult decision to make as I just wanted to be told what to do.

Good luck with your decision making xx 

Terri, I'm so happy for you.  What great news!  And what great margins!!!

Do you mind sharing what the radiologist said your percentage recurrence will be without rads? Based on a VNPI score of "4", I'm guessing that it's in the range of 6% or less. It's that number that would drive the decision for me.

Only you can know what percentage recurrence you are comfortable living with.  But one thing to remember is that before any of us were diagnosed, we were all out there living our day-to-day lives, probably not thinking about or worrying about breast cancer. And yet if we are 'average' (i.e. we have one or two small risk factors, like most women do), we were each living with approx. a 12% lifetime risk of breast cancer. But for most of us, it's only once we've been diagnosed that we start thinking about our risk level quite differently, and worrying about it so much more.  

I'm not suggesting that someone who has a 12% recurrence risk should be happy with that and not worry and not go ahead with rads and/or Tamoxifen. Some women might choose to go that route; frankly, if I had a 12% recurrence risk, I think I'd at least go ahead with the rads. But I just wanted to offer this up to provide a bit of perspective. Once you've been diagnosed, it's easy to think that a 5% recurrence risk is high. But it's actually lower than the risk that you've been comfortably living with all your adult life. And since there is absolutely nothing that we can do to get our risk down to 0%, we have to accept that we will always be living with some level of risk, so the question becomes "what does my recurrence risk need to be to make it worthwhile for me to undergo a treatment (rads and/or Tamoxifen) that comes with side effects and some small risks of it's own?"

One additional comment.  Because this is the DCIS forum, I'm talking only about local (i.e. in the breast) recurrence risk.  Women who have invasive cancer face a local recurrence risk but also face the risk of distant recurrence; treatments such as chemo and hormone therapy are used to address that.  For me, an 8% local recurrence risk is completely different than an 8% risk of a distant recurrence, i.e. mets.  Local recurrences after DCIS can almost always be treated successfully; unfortunately that's not the case with mets.  So again, just talking for myself here, I might choose to not have any further treatment if my local recurrence risk was 8%, but I doubt that I'd make that same decision if my risk of mets was 8%.  Although this is the DCIS forum and women with DCIS don't have to worry about mets, I know that many women with IDC also pop in and read this forum so I thought I'd add this point.    

Terri, I hope you have a good appointment with your MO and good luck with your decision. 

Edited to Add:  Terri I just saw your answer to BLinthedesert about your recurrence risk. I was writing my post when you posted that.  So 10% (or less) is the number you have to decide on. 

terrikoala

Terri, you and I are in the same boat, though you have a Van Nuys of 4, mine was 5.  My biopsy had scant necrosis which was not present in the biopsy.  But it put my grade between 1 and 2, thus the 5 score.  

Yours was also grade 2 so I would have thought your score would also be a 5.  It doensn't make a difference since what we are looking for is a grade 6 or less.  Also, I am 76 and in this situation, the older the better.  My DCIS was probably age related.  So I am really happy for you.  It is the best of all possible results.

I had all of my case reviewed with a 2nd opinion.  The upshot is that I am doing nothing further outside of Mammograms.

Your chances of recurrence are pretty low.  You have to weigh all that against the chances of damage from the treatment.

Best of luck to you.   I know you will make the right decision for you.  You almost cannot make a wrong one. 

I gave up smoking too Terri.  I first gave up years ago but it was the "one now and then" that was my eventual downfall. This time round I am not being tempted even once - I've decided I'm an all or nothing kind of girl.

I worked out my own Van Nuys score to be a 6. 

Infobabe,

You are saying that 10%, 5% and 2.5% are too high for a 4or 5 on Van Nuys?   Actually the 10% is really less than 10%. Please share what you have read or been told. I am taking mine from the  Van Nuys part of the DCIS treatment sheet she gave me.

The %  recurrence on that same sheet without using Van Nuys were 20% with Lump only;10% with Lump and rads and 5-8% with Lump+rads+tamox

Janet,

Yes its easier to go from 4 day to a pack than it is to do the reverse. I was ok having one every now and then  for almost 3 years. Had to practically give up drinking though...they go hand in hand out of habit I guess. If my husband had not started again I would probably not be smoking at all.

Given any thought to your treatment with Van Nuys score of 6? You are in same category as some of the rest of us. I read a bunch of studies. One said those with 4-6 score can be considered for lumpectomy only. Another said  that local recurrence  in 706 patients with 4-6 score  over 12 yr  period were not statistically different regardless of whether radiation was used. This is why its so hard to make the decision to radiate or not.

infobabe,

I don't see any % recurrence rates on that website. I see the Van Nuys scoring index on one page and a general discussion of DCIS on another page but can't find any % of recurrence. Point me to the tab to use please.

Below is from the DCIS tab and is why I am in such flux over rads:

Like invasive breast cancer, the standard treatment for DCIS is mastectomy or lumpectomy, usually followed by 6 weeks of radiation treatment, plus the drug tamoxifen. Chemotherapy is not a recommended treatment.

Ironically, invasive cancer, often in the form of a lump can often be treated with a breast conserving lumpectomy, while pre-cancerous DCIS, if it is microscopically present in more than one place, may necessitate a mastectomy.

Even though the necessity of radiation after surgery is somewhat controversial, it is often recommended for all DCIS patients. The controversial aspect of whether to radiate or not is in predicting which DCIS patients will benefit from radiation.

The Van Nuys Prognostic Index is a useful tool in calculating a woman's risk of recurrence. If her risk is high, radiation may be needed. If it is low, the approximate 50 percent risk reduction that radiation provides may not be worth it.

Janet,

The more studies I read that involve the Van Nuys index the more I think that radiation is not for me. I may stop the Wellbutrin and take Tamoxifen and see if I can stand more sweating or hot flashes ( I have them constantly and have for many years). I can't help but really worry about the lung and rib issue and other after the fact side effects from the radiation.

A wise woman on this forum cautioned me about the RO. They have 'skin in the game' since they are the ones giving and even benefiting ($$) . I am not saying they are trying to steer us to take the rads but perhaps they make it sound like we REALLY should do it. I want to see what the MO says Friday.

I'll take a look at that Infobabe.

Terricoala - it's different in the UK as our treatment is effectively free under the NHS (well we've paid for it in our taxes etc).  It can also be a bit of a "postcode lottery" over here - fortunately for me I come under an excellent hospital (purely by definition of where I live!).  From that aspect I can be sure that their recommendations are not scewed in any way as they have nothing to gain.

We can go private over here - but in all honesty you are generally seen by the same consultants etc - just within a quicker timescale. 

If I took private cover out now I would probably be excluded for anything to do with BC in future anyway. x 

Infobabe..thanks and I used the scenarios. I am more and more leaning toward trying the estrogen therapy and not the radiation. He got it all of it with wide clean margins and I am a perfect candidate on the Van Nuys Prognostic Index to only have the lumpectomy and the Van Nuys 10% recurrence is the same % as lumpectomy+radiation .  Something I have really been thinking hard about is the side effects of the radiation. I have some medical history that makes me very uncomfortable about the possible scarring effect on the top of the lung and the fracture susceptibility of the ribs. I have broken my ribs, have a history of smoking, pneumonia 3 times and had chronic bronchitis when I smoked regularly.

Will the MO be able to help me with my issues to radiate or not?  I see him tomorrow. I am sure the RO would still lean me toward Rads and I dread calling and teling her I have decided against it.

Terri,

I suggest that you bring up your concerns with the MO & RO and if not satisfied with responses, then do get a second opinion from a doc at a dif hospital.  Your history is special and diagnosis deserves it.