DCIS questions and confusions, personal stories and issues

Joycekeisman

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......

Infobabe

Joycekeisman

In Situ is the word you want to hear. 

proudtospin

the IS in DCIS is in situ

terrikoala

Ok ladies here are my lumpecotomy pathology highlights.  DCIS was .6 cm and he took out two rather large pieces of tissue: 12x6.5x1.8 cm and 7x5.5x1.5. The margins are at least 1.5 cm from lateral margin and the 'standard' for clean margins is 1-2 mm so I am very very pleased.  No evidence of residual DCIS.

 I saw the RO yesterday for 2 hours. She was really wonderful and went over every thing I could possibly want to know and answered my questions before I could ask them (I had a list).  We went over the pathology report and she  gave me all the stats and % s  for recurrence doing nothing more or rads only, Tamox only or  rads and Tamox. I was delighted that she also used the Van Nuys Prognostic Indicator process as that was on my list. My score was the best possible....'4'. I am a prime candidate to not have rads or Tamox but that just leaves me with a more complicated choice to make.  How low do I want my percent changes for recurrence to be? She did not push me in any direction. I have read many studies since I saw her and they all say basically the same thing....lumpectomy is sufficient.

I see the MO Friday

 So...thoughts?

BLinthedesert

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. 

CLC

Terri...my first thought is YEAH!!!!!  You have lots of options.  Do you also have the option of waiting to decide?

proudtospin

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

terrikoala

Claire, not sure having many choices is a good thing really. My head is spinning. While I was with the RO I was all up for rads as soon as possible and be done by vacation time early Nov. Then we discussed the 'sun' issue on the breast as I will be on the beach for 2 weeks.  Tshirt all the time over my bathing suit! Then we talked about the fatigue and believe me - I have been going to the same place (timeshare) for 30 years and the packing/unpacking/packing/unpacking alone wears me out AND we have to do a lot of walking and scuba and snorkeling. I am tired just thinking about it. I have chronic tendonitis in ankles and all that walking is hard on me to begin with. So.....I have requested a call from the RO to propose an alternate timing. Get the mammo and simulation done before vacation and start the rads as soon as I get back. She said 6-6.5 weeks. 5 regular and one of boosts. There are 6 weeks from when I get home from vacation to the end of the year and all must be complete before my high deductibles kick back in. If she says we can do the alternate then I also have a lot more time to decide for sure.

Janet456

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 

terrikoala

BLinthedesert:  RO said with my Van Nuys score my recurrence would be less than 10% which is the same as lump+rads without taking Van Nuys into consideration.

Janet: your surgery was just before mine with same characteristics. May I ask what your decision was? Did you have the Van Nuys done? If you have posted this I don't recall.

Beesie

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. 

Janet456

I opted out of rads and the RO was perfectly happy with that.  I wasn't offered tamoxofen as in the UK under the NHS they don't test for er/pr on pure DCIS.

It took me ages to make a decision but ultimately I came to be comfortable with the idea of keeping all my weapons in my kit bag for if I ever need them in the future.  Hopefully I never will!

My DCIS was only actually picked up as a incidental finding - the lumpectomy was to remove a large benign tubular adenoma.  I've been told to look at my benign lump as my Fairy Godmother.

From how my journey started off I do consider myself to be very lucky and as they can't get my risk down to 0% I am OK to live with a 15%-20% risk.  That's just me though x 

Infobabe

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. 

terrikoala

Beesie,

With the 10% recurrence on the Van Nuys if I also get rads it drops to 5% and if I also do the Tamox it drops to 2.5%. I feel like am playing roulette .

I didn't like the possible scarring of one lung and ribs become more susceptible to fracture with rads and I take one med that makes Tamox more ineffective. Its to keep me from smoking so here we go again...roulette. I quit smoking in '09 when hubby had open heart surgery and had one occasionally and that was working  ok  but when I got the 'bad' Mammo in June I started smoking more so here I am back on the pill to stop and its not to be taken with Tamox. Trying to fix one thing affects another. I will be 66 in Sept. Who knew our age would  be a plus for Prognosis.

-------------------------

Infobabe,

I may indeed be a '5' on Van Nuys. She circled grade 1 without necrosis but you are correct...I need to add one more point for the grade but 5 is still excelllent for both of us .

Janet456

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

  terrikoala

 Those odds sound awful high to me.  Are you sure about them?

terrikoala

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

Infobabe

 terrikoala

I don't really know Terri, and you have to go with what your doctor advises, but cancermath.net says overall 15 year survival is 7% recurrence.  I assumed a 1 cm size.  You can check it for yourself. 

 I'll get another web site you can look at too. 

terrikoala

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

 terrikoala

http://dciswithoutrads.com/van-nuys-prognostic-index-2/

VanNuys is only a general gage.  Your doctor might be taking lifestyle or other factors into consideration.  Does she know you still smoke?  This is a big consideration when it come to radiation.

terrikoala

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.

Janet456

I am going to stick with lumpectomy only.  I spoke to the RO for ages about it and when he summed it all up he said - that he sees alot of people and some decline rads, and he worries about them alot....... but if I don't want them he would not lose a wink of sleep over it.

He also said we would be having a different conversation if my grade was higher.

Do keep us posted with your decision, and as everybody rightly says, it has to be your decision based on what you are happy with.  I wish you well with that one - it took me ages to make!

Oh and I agree a nice glass of wine and a ciggy do go hand in hand - alas not for me anymore  

terrikoala

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.

Infobabe

terrikoala

The cancermath.net poses different scenarios regarding treatments and no treatment.  You just have to plug in the different elements for your type of breast cancer. 

You have a little time to synthesize all this information for a while and it is good that you are seeing the MO this Friday.  You should come away with a better understanding and feel more comfortable.   It is an awful lot to dump on you at one time.  This web site has a lot of information that you might have a look at.

Janet456

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

http://www.breastcancer.org/symptoms/types/dcis/treatment.jsp



Terri, try the above.

terrikoala

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.

terrikoala

Info babe,

That is one part of the website I never saw and its great. I am confused by the % recurrences. What I was given by the RO says 20% with lump only and lump with rads 10%.  Below is from the symptom page you pointed me to...

In cases of DCIS, radiation therapy can reduce the risk of the cancer coming back by about 60%. For example, after lumpectomy alone, the risk of the cancer returning is about 30%, although it may be lower or higher, depending on the situation. Radiation can reduce that risk to 10% or less for a return of invasive cancer and to about 15% for a return of DCIS. 

proudtospin

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.

Joycekeisman

I have my post op on Monday, lumoectomy for DCIS with lcis , any advice on questions to ask my surgeon??