Lumpectomy with no further treatment

P.S. to Laraby -- HER2 testing isn't usually done for non-invasive cancers, since there's no question of getting chemo. 

Mary , Your story is encouraging to me.  I have Invasive ductal carcenomo HER2NUE 3+ ER+(slightly) PRneg stage 1 cancer, small 12 mm tumor.  every surgeon I have talked to says lumpectomy sentinal node biopsy Herceptin (only treatment for HEr2 Nue positive) Chemo and radiation.  i saw 10 diff docs, all say same.   Looks like the lymph notes are clear at the moment form an MRI.  I'm refusing chemo.  I'm concidering refusing radiation ou get.

also, but I'm scheduled at Stanford hospital for a new type of surgery called IORT one blast ofhigh does radiation only where the tumor was removed done at the time of surgery and that is all you get.  However I'm reconsidering.  I'm concerned that any radiation might cause more cancer.   I'm seeing a naturopath, completley changing my diet getting vitamin c IV every week, taking graviolaand  taking Hemp oil (see youtube movie RUN FROM THE CURE) .I feel my body has a much better chance at fighting off the cancer without damaging it from chemo and herceptin.   I'm on hte fene about radiation.  What kind o

Hello laraby,

did I understand you had a lumpectomy with no rads and your were her2nue3+?

did you take herceptin or do Chemo?  I also have small 12mm her2nue 3+ 

and am not doing chemo but considering IORT.   How did you do with it where are you now? 

I had a lumpectomy on Friday. There was nothing at all in the tissue from the lumpectomy. The biopsy got it all. I went to the BS today. He said he would be comfortable with no radiation. Mamo every 6 months. He gave me some info on Tamoxifen and said it might be a consideration. He wants me to see the RO and see what he says. Right this minute I'm praising God for the good news and I'm pretty sure I'm not going to have any other treatment. I'm post menapause so don't really know how effective the tamo would be or if I even want to chance the side effects. This has been such an ordeal for me. I keep thinking what if I had had a mx,which is what alot of my friends said they would do. And of course the BS gave me that option as well. I would be kicking myself right now. A very wise friend told me to make a decision and then trust God to take care of it. Once I made my decision to have a lumpectomy I had peace about it. And I know that once I make a decision about further treatment God will give me peace about that to.

 Thanks to all of you ladies who post on this site and I lift you up in prayer everyday.

I too have had a lumpectomy with big margins and no further treatment.  My lesion was 9mm by 4mm, DCIS, grade 1 to 2 (because if scant necrosis in the biopsy but no necrosis in the lumpectomy), no calcifications, and I am 76.  This gives me a Van Nuyes score of 5.

Rads are still the standard of care for DCIS.  I think this should change.   If you do not research and find a board like this one, you will get the full treatment.  I think it is time to stop the one size fits all approach to breast cancer.  DCIS is literally a different animal and should be treated as such.

As demonstrated on this thread, there are multiple variations in each case but it is possible to parse out the women who should get more extensive treatment and who should not.

I was only diagnosed last March so I am not long out.  And I do what I am doing with some trepidation, but I am taking the chance and the posts here give me encouragement. I also acquired the 2nd opinion from Dr. Michael Lgious and it gave me the basis for my decision. 

pnmg02

Whether or not you have rads is your decision.  It is all about what you are comfortable with.

 I didn't want them because of the possible lung zaps and raised incidence of skin cancer.  There is a lesser chance of zaps to the heart and many women complain about rads hitting the abdomen and throat.  There are many other side effects I didn't want to deal with. 

On the other hand, many women go through with rads, no problem.  Much of it has to do with your own physical condition and the skill of the radiologist.  I am already at an increased risk of skin cancer and have a history of dry cough.

You were only recently diagnosed and just had your lumpectomy.  Do you know the size?  You will have a period of time to heal before rads would be started.  This will give you time to synthesize all this information.  I don't urge anyone to do as have done because as I said, everyone has different circumstances. 

If the DCIS is not small and confined but instead runs through the breast, then rads or mastectomy would probably be recommended.

The Dr. Lagious web site says the cost is a little over $600.  Though I gave credit card information, I was not charged for a long time and then I learned that Medicare paid about half.  I will submit the rest to my insurance company.  However, I would gladly pay the $600 because I think the opinion was worth it.  You should find out from your insurance company about payment for 2nd opinions.  I would urge you to check the web site again and read those articles about DCIS.  

Janet456

Did your lumpectomy have any DCIS? The only thing I'm having a little difficulty with is on the original biopsy the pathology was intermediate with comedo necrosis. The BS didn't seem to concerned about that originally and I forgot to ask him about it yesterday after the final path. I will ask the RO. Also, when they did the path on the biopsy they did a MIB1 KI-67 test which most labs don't do I've found out from much research. But mine was 20% which again from research I've found is borderline aggresive, but most doc don't use it as a prognosis tool. I will ask the RO about that too.  I do know what you mean about wavering back and forth. Yesterday I was very excited about no rads but today I'm wondering. I figure I'll go back and forth until I have to get down to the nitty gritty and make a final decision. Just like I did deciding on rather to have lx or mx. Sure am glad I didn't go with a mx, I would be really be second guessing my decisions.

good luck and keep posting and letting me know how you are doing.

I consulted with Dr. Lagios in 2007. Part of the deal is that you get to talk to him personally for 45 minutes. The other cool thing is that he uses the Van Nuys Prognostic Index to calculate your risk of recurrence without radiation. Using the VNPI, he calculated my risk as only 4 percent. Because of that, I felt I could reasonably opt out. It gave me great peace of mind to know that my risk was so low.

Best,

Sandie

 Barbi811

Barb, how old are you and what size was the DCIS?   Do you know how big the margins were?

I am in process of making decison for furthur tx right now. I see that there are no new posts on this subject and want to know what people are thinking/doing recently. Anybody out there?

http://en.wikibooks.org/wiki/Radiation_Oncology/Breast/DCIS/Van_Nuys

http://www.breastcancerconsultdr.com/about_dr_lagios/about_dr_lagios.html

Another site, that I like is the one at Memorial Sloan Kettering: http://www.mskcc.org/cancer-care/adult/breast/prediction-tools 

Thank you, Infobabe and BLinthedesert!

NSJ2

MaggieDT

Interesting story, Maggie.  You are 81 so good for you.  I am 76 and it was lonely here.

What was your diagnosis?  I was Stage 0, grade 1, 9mm by 4mm, hormone positive.  After a really long story, I decided not to have further treatment after the rescission lumpectomy, no rads, no Tamoxifen.   My doctors support my decision.  Lets compare notes.

Hi everyone! I recently underwent a lumpectomy for Stage 0 dcis. Clear margins were produced. Both my surgeon and my Oncologist recommended no need for radiation treatments or follow-up medications, even though the pathology report indicated breast tissue was hormone receptive for both estrogen and progesterone. I am 58 and (thank God) in excellent health. My surgeon indicated the standard normal procedures for treating dcis are being re-evaluated, and he believes those standards will no longer be practiced within the next 5 years. I feel too good to take the hormonal drugs which have so many nasty side-effects. Since both my surgeon and my Oncologist recommend no further treatment is necessary, I feel confident moving forward with my wonderful life. Of course, I will be closely monitored with 6 month mammos. May God richly bless all of us with good health! Oh...one more thing....has anyone done any research on natural products effective in reducing the hormone receptor issue?

 LindaCrocker

Your diagnosis was the same as me. In addition, my DCIS was 9mm and I was 75 when diagnosed March 2012.  Standard of care was lumpectomy, rads and Tamoxifen.  After a lot of research on this web site and other places and the recommendation of a second opinion from Dr. Michael Lagious, I refused rads and T, after the lumpectomy which produced big margins.

I just had my one year diagnostic mammogram and it was Normal.  I know I will always have risk, but so far so good.