Anyone with a high Van Nuys index NOT get a mastectomy?

CrunchyPoodleMama

My surgeon has not brought up the Van Nuys index to me, and I'm not about to bring it up to him... because (depending on how you look at it), I'm between 9 and 11. Yikes!! I would think based on that one number, any surgeon would recommend an automatic mastectomy.

I, though, crazy though I may be, still don't want to have a mastectomy at this point, for several specific reasons (I also have several specific reasons to believe my risk from this point forward is lower than others of the same Van Nuys number). 

Has ANYONE else here declined a mastectomy even though you rated 9 to 12?? Hoping I don't hear crickets chirping but I am half-expecting to...

SJW1

Julia,

When I had DCIS, I was told I needed a mastectomy twice. The first time I was told this by the first surgeon I saw, because he thought my DCIS was too widely scattered to get good cosemetic results. When I asked for a 2nd opinion, the 2nd surgeon I saw said she could get good results with "only" a lumpectomy.

I too did not want a mastectomy for a pre-invasive cancer! The only problem is after my surgery, they said that 5 out of 6 margins were positive. I still did not want a mastectomy, so I consulted with Dr. Michael Lagios, world renowed DCIS expert and pathologist, who is also a co-creator of the Van Nuys Prognostic Index.

He suggested I have a RODEO MRI with Dr. Steven Harms, one of the most well-known radiologists in the U.S. A RODEO MRI is better able to "see" DCIS. The idea being that if they could clearly see where the remaining DCIS was, then they could do a more tailored re-excision, rather than a mastectomy.

I thought this idea was crazy, but because Dr. Lagios suggested it, I drove to Arkansas from Michigan for the RODEO MRI. They found two suspicious areas and biopsied both, and both were benign.

Because nothing made sense. I then had Dr. Lagios review my post surgical pathology. He disagreed with my local pathologist. He said I not only did not need a mastectomy, but I also could skip radiation and tamoxifen.Granted my VNPI score was 5 which meant my recurrence risk is 4 percent.

Since any one can consult with him, maybe if you did that, he would disagree with the pathology you have had done so far. At worst, he might be able to suggest something you could try other than a masectomy.

Since all this happened, I like you have totally changed my diet and have made several other alternative changes that I believe lower my recurrence risk even more.

Please send me a private message if you would like to talk more.

No matter what any doctor, says the choice is always yours!

Blessings,

Sandie

PS I am also in contact with two other DCIS patients who have received scores of  7and 8 on the VNPI after consulting with Dr. Lagios. (Sorry, no 9, 10, or 11s). They might be willing to "talk" to you also, if that would be helpful.

CrunchyPoodleMama

Thank you SO muich for your reply, Sandie... I've been in contact with two wonderful women here who have also consulted with Dr. Lagios and I've already decided to consult with him depending on how my post-reexcision meeting with my surgeon goes on Thursday. I got to thinking though about my VNPI and wondering if even Dr. Lagios would say I really need a mastectomy because of that. 

What I'm thinking now is having a baby first... like immediately... THEN having a mastectomy. I had posted about this idea before (before my re-excision) and several replies convinced me it was a bad idea to become pregnant while I still had DCIS cells in me (at the time, I had only had a lumpectomy and did NOT get clear margins). Even though my margins were close with the re-excision, at least I don't have any known DCIS cells remaining this time, so I'm thinking it wouldn't be as dangerous to wait 10-12 months before having a mastectomy.

I hadn't heard of a RODEO MRI, so thank you for mentioning that!! Filing that away as something to potentially look into.

ebarry

CrunchyPoodle, mama, You only need one good breast to breast feed. Personally, I am not sure I would be comfortable feeding my baby from a breast that had dcis cells. Hopefully they are all out, but remember, dcis can skip or jump. To get a half way decent lumpectomy depends on your breast size. You already had one, plus a recision. I'm not pro mx. If I had enough breast and the choice was mine, I would probably go for a lumpectomy the first or maybe second time around like I did. If not, I would go for the max, keeping the nipple and breast skin.

I'm really excited about you having a baby. I believe you will. Let me know when it happens. I am going to try to wean my way off of this board. I need to think cancer free, and being on here lately keeps me too preoccupied with it. Especially now that I know I'm cancer free.

CrunchyPoodleMama

ebarry, not to worry, I would never breastfeed my baby from the DCIS breast... I would, however, pump that breast (and throw the milk away... maybe have it tested for cancer cells, just out of sheer curiosity!).

Weirdly, I had always been rather small-breasted (at least until I started gaining a lot of weight a few years ago). I wouldn't have thought a lumpectomy + reexcision could possibly look good, but I'm really thrilled with how good it looks... actually my first thought after the reexcision was, "Wow, that looks too good -- he obviously didn't take out nearly enough!!"

Thanks for your kind words about having a baby... I'm starting to think maybe I'll be able to have one, too! I know what you mean about needing to be focused on other things... and just wanted to say CONGRATS again for being officially CANCER-FREE!!!!!!!!!!!!!!! You've beaten it, girl!!

mbordo

My VNPI was 10.  I consulted w/Dr. Lagios in person (he is in San Francisco) and appreciated his perspective and expertise.  I *did* end up w/mast after lumpectomy and re-excision - his 2nd opinion of my pathology indicated my margins were still dirty though my surgeon said they were okay....local pathologist said ADH only @ margin, Dr. Lagios said it was low grade DCIS @ margin instead, and I opted to go w/his opinion, given his experience.

A consult with him is well worth it, IMO.  He is not "pro-mx" per se, but he does a good job explaining how the various choices impact your recurrence rate - and margins seem to be the hugest factor in successfully getting by w/a lumpectomy...

Good luck!

CrunchyPoodleMama

Thank you, mbordo - that is helpful to know - and congrats on being truly DCIS/ADH-free now!

mom3band1g

about the breastfeeding......I did breastfeed 1 and maybe 2 babies with DCIS  (I didn't know of course) and had no problem with supply, etc.  I asked my bs about it and she said     'yes, it happens ' ...there is no ill-effect for the baby.  It does sound weird though.  Just thought I'd throw that out there.

CrunchyPoodleMama

Really?? Wow... that's interesting. I was thinking about it more and the DCIS ducts have been removed now... no milk would be coming out of those ducts... just the healthy ducts. Hmmm. (Not that I'm going to take any chances, but like I said, I'd be curious to have the milk tested!)

mom3band1g

Yea, it's a crazy thought.  I did ask my bs 'so my daughter drank cancer milk?"  and  yes, she did.  But, she did say the milk flowed through the ducts where they were 'open' and not clogged with the DCIS cells.  My lump only showed up after my dd stopped nursing so I do wonder if her nursing helped keep some of the ducts open.....who knows.