DCIS lumpectomy without radiation?

ww3354

infobabe - my doctor was also proud and told me he thought I was awesome for being proactive. I do believe the surgeon's nurse called me on her own. We developed a nice relationship over the last few months. When she called she told me she hoped she wasn't crossing any boundaries and that I could tell her to mind her own business if I wanted to. I should have the nurse listen in on Dr. Lagios 40 minute phone conversation with me and then tell me what she thinks.

TreeLover

Who's supposed to supply the recurrence risk numbers? MO or RO?

I saw my MO last week and he wouldn't tell me anything, just said "I'm the tamoxifen guy." I see my RO this week and will push her to give me some percentages. I'm post-op now so we all have the path report. Have been considering Dr. Lagios for 2nd opinion, but insurance won't cover. Would love to avoid RT but older sister had IDC at age 42, so family history alone probably indicates it for me. Wish they could predict better when/if DCIS morphs into IDC.

pamergy

I had surgery last month and am not having chemo or radiation. I am doing alkalized water, 80% raw food, the Budwig diet (flax oil and cottage cheese), and supplements from "Cancer Step Outside The Box" and Bill Henderson's protocol (he uses Budwig). I have more fear of chemo and radiation effects than cancer. I want to build up my body so it can deal with it.

Beesie

TreeLover, usually it's the MO who provides recurrence risk info and who recommends which post-surgical treatments are advisable. So for your MO to say "I'm the tamoxifen guy." seems like he's narrowed his scope a bit too much. Maybe you can ask your MO what your risk level would be without taking Tamoxifen (but assuming you have rads) and what your risk level would be if you take Tamoxifen. Since rads cuts recurrence risk by approx. 50%, if you double whatever number he gives you as the "without Tamoxifen" number, you'd have his estimate of your risk level without rads.

It's also worth it to ask the RO, although I suspect that he might overstate the risk since he has a vested interest.

I notice from your signature line that your DCIS was grade 1 and was 1cm in size. Was it actually 1cm or was it smaller? And how wide were your margins? You might find this article by Drs. Silverstein and Lagios to be helpful. It includes an explanation of the Van Nuys Prognostic Index, which is what Dr. Lagios uses to assess risk (see Tables 1 and 2):

Choosing Treatment for Patients With Ductal Carcinoma In Situ: Fine Tuning the University of Southern California/Van Nuys Prognostic Index

Annette47

My RO gave me the odds before/after radiation, and then my MO talked about the odds with/without tamoxifen. Both docs gave numbers that were very similar to the MSK nomogram, so I felt pretty comfortable with their answers.

TreeLover

Thanks, Beesie, I'll look at that link. My USC/VNPI on path report came out 8 of 12, I think because of 1 small margin on the superficial side; otherwise 7mm or greater all around. Tumor actually 1.8cm. I'm only 53. Surgeon removed skin at small margin. I like my RO but yes, focus seems too narrow.

Beesie

A too small margin is a big deal when it comes to recurrence risk. But if the margin was at the skin and the closest area of skin was removed, that probably would lower the risk. The question, of course, is how much would it lower the risk. And then it's all a question of how much recurrence risk you can live with.

I had a MX but my one narrow margin was right by the skin. So I too had a bit of the skin removed. That seems to have worked for me - I'm 8 years out with no recurrence. But of course one person's experience has no bearing on anyone else's.

redsox

Unfortunately, with DCIS there is no standard of which specialist gives you the best information on risks. With IDC it is usually the med onc, but for DCIS it really depends on the specific doctors. You just have to find one who really answers your questions well.

TreeLover

The right doc makes a difference! My 2nd RO came prepared to our first meeting with risk recurrence numbers for me -- the same ones I generated from a Memorial Sloan-Kettering calculator. It's easy to use and you don't have to be a physician:

http://nomograms.mskcc.org/Breast/DuctalCarcinomaInSituRecurrencePage.aspx

[Oops, FYI: In subsequent reading I've learned this nomogram is not validated, so use only with caution according to Yi et al:

http://www.ncbi.nlm.nih.gov/pubmed/22253459

Dr. Lagios, the pathologist-consultant with whom I spoke on 11-20-2013, vastly prefers the USC/Van Nuys index, which factors in tumor size. The MSK nomogram omits tumor size, substituting instead "number of excisions"; Dr. Lagios thought that was "ridiculous" & not the same thing at all.--end update]

We had a good discussion and she didn't try to push me into anything, said I have an 8 week window after surgery. If I decide to proceed with RT, at least now I have a doc I trust. Meanwhile, I'm contacting Dr. Lagios' office today to get a second opinion.

Beesie

Sounds like you had a good meeting with the RO, and that you have a good plan! Let us know how it goes with Dr. Lagios.

Bobbin

I was in a similar situation as you Treelover. Pretty much same size DCIS, etc. I consulted Dr. Lagois and was so happy I did. He gave me the risk of recurrence as 9 % if I go with rads, 14% without. I felt the 5% difference wasn't worth receiving rads. But as Beesie mentioned, we can't compare each others situations. Dr. Lagois is pricey, but I felt totally worth it for the peace of mind I felt. I'm in Eastern Canada so it was considerably more expensive considering shipping and currency differences. I'm sure you will be happy you consulted with him regardless of what he advises. be well!

dp4peace

pamergy:

We sound a lot alike. I am doing all the same except have not tried the Budwig Protocol. Have heard a lot about it though. Have you seen the dcis redefined site? I co-created it with Sandie Walters -- who also did lumpectomy only. You may find some helpful info there. We are looking for others to share their "integrative" health stories following DCIS. Keep strong on keep sharing what you learn! Donna

TreeLover

Bobbin, thanks much. The bills are flying around my head like autumn leaves but I don't care. More info = peace of mind. Really looking forward to the 2nd opinion. Expect to hear something soon.

Since you passed on rads, did you consider tamoxifen at all? (I know Dr. Lagios isn't keen on it.)

Infobabe

Threelover, Tomoxifen depends more on your age. Yes if you are younger. The trade off is risk of BC vs: risk of heart attack and stroke.

I need to add, I didn't find Dr. Lagious to be expensive. In my case, insurance covered about all of it, but in the USA.

percy4

Am new to this; not treated yet for <1cent, low-grade ER+ PR+ DCIS from stereotactic biopsy.  I'm post-menopausal, this confirmed by estodial in blood being almost nil.  If one has almost no estrogen in their system already, why do they recommend an estogen-blocker, with possibly huge side effects, at all?

Annette47

Percy4 - estrogen is not only produced by your ovaries ... for example, fat cells produce it too. Menopause dramatically lowers your estrogen levels, but they don't drop to zero.

Bobbin

Hi Treelover. I passed on tamoxifen before I passed on the rads. Here in Canada we see everyone in a certain order...or at least I did. Surgery, then MO, then RO. I read all about tamoxifen and decided I didn't want the side effects, or the risk of..... and my RO agreed with my grade etc, to forgo it. Dr. Lagios also agreed. yeah! Looking forward to hearing what his advice to you is!

percy4

Hi Bobbin - Are you saying you had lumpectomy alone with no rads and no drugs?  See the size of your DCIS (only very slightly larger than mine) and mine is low-grade ER+, at least the punch-samples are.  What was the size of lumpectomy (like a walnut-size?).  And can you please tell me the mm of all your margins.  I'm simply not being offered that treatment option here in CA.  Were you "defying" them, or did they (traditional docs) think it was a good plan, and what % chance (for you), in their opinion, of recurrance w/o rads and drugs?  You're the first one I've heard from with this treatment plan, so forgive me wanting to know all those exact details, but it would help me think, if you don't mind.  Of course only when you have the time.  Also, though not the norm here, I've instinctively just set up appts. as yours were, just that order, but at my request, not surgeon's advice.  Saw surgeon, seeing MO Thurs., RO next Monday, second opinion breast specialist surgeon next Thurs.  This Dr. Lagios sounds amazing, but I'm with Kaiser and have no money.  How does one contact him, consult with him, what kind of money are we talking about if you have to pay him yourself, and does he need to recieve your specimen, or just know details of it?  Can he tell me what to ask for in lumpectomy path report they might not normally do?  I thought I heard he's in SF; me, JUST outside, or he also does phone consults?  Sorry for the imposition, but I want to get it right from the beginning.  Thank you so much.

Bobbin

Hi Percy4, no imposition at all! Let's see if I can answer all your questions. First, there are several of us on this forum who have gone lumpectomy only, I'm sure they will chime in at some point. So, yes, I went lumpectomy only, no rads or drugs. My RO agreed with me, but she said she could have gone the other way if I insisted, but given my grade and size of DCIS, as well as my margins, she accepted my decision not to take tamoxifen.

As for my margins. Most were 9 mm, but the closest was only 1 mm, which was at the chest wall. My surgeon said he couldn't have gone any closer as he was at the chest wall. Dr. Lagois said I have a Van Nuys score of 7, which has a good local control without irradation therapy. He suggested I have a re excision, but at the chest wall,.... there was no more tissue, so it couldn't be done. The chunk that was removed was large, larger than I thought should have been taken, but I had two spots close together and rather than make two cuts, they took out 6.9 x 6.7 x 2.3 cm.

The cost for me was about 800$ Canadian. I'm not sure what he charges US residents. He is in Tiburon, California. Not sure exactly where that is in relation to SF.

And yes, I guess you could say I went against 2 of the 3 docs. The surgeon wanted me to have rads, as well as the RO. They want us to follow the standard of care. My DCIS was left side and I read about heart and lung problems that I wanted to avoid if possible. As well as...if I did have a recurrence, and had rads, the rads MAY take away the chance of more rads in the event of a recurrence. Therefore, a MX may be needed. I've had 2 mammograms since my surgery, as well as an MRI. I'm going for an ultrasound tomorrow, and so far, all is good.

If you can find the funds, Dr. Lagios will be very helpful. He only gives consults ( I think ) after the surgery. You send him your slides ( in Canada, I had to have the hospital send them, and I paid for the shipping) and he looks at them, then calls you with his opinion and sends you a written report. I'm not sure what Kaiser is.

Here is his website if you haven't been able to locate it.

http://www.breastcancerconsultdr.com/

I'd like to say again tho, you can't compare what I did and what others did. Do lots of reading. It's a hard decision to make, regardless of what it is. Here is my theory, I don't think... I know... I won't have a recurrence, so I rolled the dice. Either way, no rads or with rads, there is pros and cons for both!

A year later and I hardly think about it, in fact, I haven't been around the forum much. IN FACT!!!!, I had to go and look up all my reports because I forgot all the details!

Hope I've helped. be well!

Bobbin

percy4

Thank you SO much for taking the time, Bobbin.  Tiburon is the near SF that I happen to live in.  I will call him.  Thought you were talking thousands, not hundreds.  Thanks again!

Bobbin

my pleasure.... I KNOW all will go well!

TreeLover

2nd opinion results:

I talked to Dr. Lagios this week and read his report, and am still waffling about RT or Tamoxifen. He calculated my USC/Van Nuys # as 7, with a 14% risk of recurrence (RR) over 12 years; with a reduction to 9% with RT. In my report, he said he doesn't "recommend tamoxifen or aromatase inihibitors for mammographically detected DCIS of small size, unassociated with invasive disease."

He said that, with non-invasive cancer like DCIS, I could safely take 10-14 weeks after surgery before diving into RT. In fact, he recommended healing for 3 months after surgery, then re-image with mammogram (and MRI if possible) to see how things look, and decide.

Even though my insurance deductible is already paid this year, I can't force myself to have RT just because it's more affordable. Doesn't feel like the right long-term decision. So I'm going to wait and keep reading. On the California Cancer Institute site, for example, they say:

Radiation should be included following breast-conserving surgery if the DCIS has a high-grade histology, close margins, or is more than about 5/8 of an inch in size.

source: http://www.dcis.info/treatment-radiation.html

My DCIS is thankfully low grade, 12-15 mm, with decent margins. I'd rather get my long term RR down to less than double digits; but since my surgery was on the left side, I'm weighing potential risk to the heart, no matter how careful the radiology technicians try to be. Dr. Lagios suggested reading Darby et al. 2013 ("Risk of Ischemic Heart Disease ...") which is in my reading pile:

http://www.nejm.org/doi/full/10.1056/NEJMoa1209825#t=articleTop

Meanwhile, other lifestyle factors affecting cancer are within my control: walking an hour a day; limiting alcohol; and including nuts and blueberries and other cancer-fighters in my diet.

dp4peace

Hi Tree Lover,

Great that you had a consultation with Dr. Lagios. His opinion gave me a great deal of peace of mind when I was in major decision-making mode 2 years ago and I am eternally grateful to him. My friend Sandie Walters and I have recently put together a website called DCIS REDEFINED.org (Dilemmas, Choices & Integrative Solutions) to provide support and share the multitude of resources that we have collected over several years of extensive study regarding treatment and monitoring of DCIS. Please PM if you'd like or if you have any specific questions. Good that you are taking time to research before making any further treatment decisions. This is an important time and it is not easy!! Blessings of peace and health, Donna

anne31

I have DCIS left breast stage 2. This has really shocked me and I am undecided if I should have radation after my lumpectomy on the 8th of January. I decided that I  would never ever have chemo years and years ago. I am also on the alkline diet, and I found a wonderful book save your life with lemons and limes. Blythe Ayne, phd. I really feel good with the diet no aches and pains sleeping better to. I am glad that I have found someone like you that feels the way I do thank you. God bless you.

 

 

Beesie

Anne, is your diagnosis DCIS grade 2 (not stage 2)?  Pure DCIS is always Stage 0.  

If your diagnosis is in fact Stage 2, then it's not DCIS and that's a very different scenario.

anne31

hi 

I had my lumpectomy and two nodes removed. there was no cancer in my nodes and the margins were clear.

I have DCIS I am sure the nurse told me that it was stage 2.

Beesie

anne,

It can't be pure DCIS if you are Stage 2.  There is no such diagnosis. But are you sure that it's not grade 2?  DCIS can be grade 1 (low grade), grade 2 (intermediate grade) or grade 3 (high grade).

If in fact you are Stage 2, then your diagnosis might include some DCIS but it must also include some invasive cancer.  DCIS on it's own is always and only Stage 0.  It's quite common to have a tumor that includes both DCIS and IDC (invasive cancer).  When that happens, the staging, treatment plan and prognosis is based on the IDC, not the DCIS, since the DCIS is the less serious condition.

icebaby10

I have had a lumpectomy and radiation and not on tomoxifen. . I have had a VATS Boipsy and wedge resection of all 3 right lung lobes..I have Pulmonary Langerhan histiocytosis.. It is inactive at this time but my radiation Oncologist did not blink about it.. I had 36 rad treatments.

pattij

i was diagnosed in 2008 and had a lumpectomy and tamoxifen, no radiation, margins were wide (all tissue was clear) calcifications were removed during biopsy... i was told it was ER positive...

just diagnosed last week with a new cancer or a recurrence, im not sure which, waiting for the full pathology report, i do know this new cancer is ER and PR negative and her2 positive, stage 1 (tumor is <1cm)

no idea if no radiation was a good idea or not... probably not... but who knows...

wirdgirl118

Pattij, who can say if radiation helps. I had radiation in 2006 after a partial mastectomy, and lo and behold, that same breast got DCIS recurrence plus a new b.c. 5 years later. I have more issues on the left side post-BMX. Is that due to radiation. Who knows. When the DCIS returned, it grew towards the nipple instead of towards the lymph nodes. Was that thanks to the radiation? Who knows, but I'm grateful to survive it all.