Lumpectomy with no further treatment

Eloise

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

olefin

Bessie,
Saw my Oncologist today.
I asked about my margin, he only said it was good and it was negative.
Also told him that the radiologist had recommended... no radiation.

Also got the results of the Oncotype DX testing. My score was 11, which he said is very good. But he wants me to start taking Femara pills.
I've had a severe case of bloods clots many years ago from taking hormones that almost cost me my life. And I see Femara has a 2% risk of blood clots. Also read many people have many other problems from taking Femara.

I told the Oncologist I didn't want to take Femara but then he said if I wasn't having radiation or taking Femara he would recommend a mastectomy??

I'm wanting to have no further treatment and have yearly mammograms. But after seeing the Oncologist I'm now more confused!

I'm thinking of going to MD Anderson Cancer Center in Houston for a second opinion.

Your advice or from others is appreciated.

LeslieVilla

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

LeslieVilla

I say Dr Lagios here in San Francisco.  He is a wonderful guy.  I asked for a second opinion on my path report and he found that California Pacific Hospital didn't even do a FSH test on my tissue and I'm actually slighlty ER positive, not ER neg as i was initally told.  I'm glad i live so close to him. I have  grade 7 Tumor and though surgoens tell me not to, Dr Lagios says I shoudl demand a Oncotype DX tx.  I'm refusing chemo anyway but not sure about the radiation yet.

LeslieVilla

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? 

wishImay

I have a few chronic illnesses, including a lousy immune system, so radiation was a rule-out for me by my oncologist.  I had DCIS, non-invasive, grade 3.  Lumpectomy was 3/15, and the margins were described as "widely clear," a major relief.  A week later developed an infection and was hospitalized and although improved, there's still something wrong, swollen, painful.  Anyway, this is scary stuff, knowing that I can't have radiation even if I wanted it.  On the other hand, I have a friend who had a lumpectomy for DCIS summer of 2010, had radiation and developed lymphedema, which, if you haven't read about it on this site, you should.  it's definitely something you don't want. My understanding is that it is rare, but awful for those who get it  So, on another level I feel some relief that I can't have radiation.  If you're faced with the dilemma, I suggest you ask your surgeon about lymphedema and your likelihood of developing it.  That might make your decision easier.   

pnmg02

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.

Infobabe

ellennylen

Do you have a ocpy of your path report?  There cannot be invasive DCIS.  It has a big bearing on your treatment.

Infobabe

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

infobabe thanks for your response. I went to Dr. L's site and read some on it. It didn't have any indication if insurance pays or what ins they take, in other words no financial info that I could find. I'm very excited that the bc says no rads but i'm also a little leary there is always that question.

Infobabe

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

Naturally I have read this thread with interest seeing as I opted out of rads with the oncs blessing.

So I made my decision, then dithered, then thought about changing my mind again and again - and now finally I am happy with it. 

pnmg02 - good luck with your decision making.  It's not easy x 

pnmg02

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.

Janet456

Hi Pam

Make sure you write everything down and ask all your questions.  You have an excellent grasp of all the details of your situation so as long as you get all the answers you will be able to make a decision that's right for you.  I doubt you will have to decide immediately either so you can come home and mull it all over and take a bit of time.

I didn't know any of those details, all I knew was that it was intermediate grade.  In the UK they don't test for er/pr for pure DCIS either.

Mine is a bit of an unusual story in that I was a birads 5 for a large ill-defined tumour, which after several biopsies turned out to be a B9 tubular adenoma.  When I had the lumpectomy they took it away and on final pathology they found 9mm of DCIS grade 2 on the outside edge so it was picked up as an "incidental finding".  As the margins were clear I just had to see an RO but only to be told I didn't need rads.  His words were "he wouldn't lose any sleep over me not having rads" so whoopee I was out of there toot sweet!

Then I got to the dithering stage and now I've come to be happy with my decision.  Part of my reasoning was that if I ever have to deal with this again, and next time it's invasive, I would rather bring out the rads weapon then.  Hopefully I won't need it.

It's such a personal decision and you have to make the right decision for you and the trick is then - to not look back.  So much easier said than done! xxx 

SJW1

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

Thank you for your post..

It has been three weeks since my lumpectomy..

Prognosis excellent..Clear Margins etc..

I had DCIS stage 0..I am leaning towards no treatments.

I will consult the Oncologist knowing he will push for Radiation..

I believe I am not a candidate since my family history is Scleroderman and Crest disease

which affects lungs and esophogaus...

Fingers Crossed and life is a gamble...Ill take the chance.

We have no gaurantees..So ladies go with the inner voice and gut..!!! 

Good Luck to us all !!!!

Infobabe

 Barbi811

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

Barbi811

I am 61yrs old..

Margins 0.7 if that makes sense.They say 0.9cm is great  .Not sure how to read the pathology report..

Im seeing Oncologist next week..Three weeks ago was my surgery..Report says Negative on all account.

Im so confused..

Sher7

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?

NSJ2

Hi all. I'm reading this thread with great interest.

Can anyone provide me with a linkster to the following sites please?

1. Van Nuys Prognostic Index

2. Dr. Lagios site

Thanks so much!

NSJ2

BLinthedesert

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 

Infobabe

NSJ2  

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

NSJ2

Thank you, Infobabe and BLinthedesert!

NSJ2

MaggieDT

I hae been on the journey since April 1, 2010. Partial lumpectomy followed with 10 mg of Tamoxifin.

Tamoxifin increased to 20 mg a year ago.  Beginning June 2011 started having spells of vertio.  The vertigo itself only last seconds. But felt nauseau, fatugue for at least one week following, and of course I was afraid to drive the car until I was sure Vertigo had ceased.  Luckily the Vertigo was positional lying down at night or turning in bed.  After pursuing examinations with ENT, Nuerosurgeon, , sonogram, etc My doctor decided to leave Tamoxifin off this past June for 3 months. Took 2 months to clear the drug. I have had a very healthy August into September off the drug. I have found reading womens posts who have trouble with the drug that the brand manufacturer Astra Zeneca stopped producing it last year.  Checking with my pharmacist re manufacturer of drug I was given during Vertigo episodes was Watson. My first doeage was mfg Tega, and only had slight manageable side affects like underarm odor, fatigue.  I am 81 had hysterectomy at age 40.

There is a world of side affects you can have from Tamoxifin that are not on the perscription list: aggravates arthritis, upset stomach, hair loss, affects nail condition & growth, I believe my blood pressure increased with the Vertigo upsets,  Of course, the doctors will tell you they have not heard of these additional side affects, so it is comforting to see where other women have had the same things happen. I have found three other posts for Vertigo since last year, and they eperienced their episodes just months into the drug. I don't know which manufacturer was furnishing their Tamoxifin.

I have read that women who have radiation after partial masectomy live the same length of time as women who do not.  I don't know  My doctor left this decision up to me.  I did not have radiation. This can be very invasive and can affect your lungs.

Hope this post helps others.  If I had seen posts for Tamoxifin affecting Vertigo I would have saved a year of bad health. 

Infobabe

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.

3wishes

All these posts seem to have the same theme, DCIS....Mine is triple neg very small, 2mm, no nodes, clear margins.  Has anyone not had treatment having that?  My surgeon is testing for BRACA and says if positive then mastecomy.  I can't believe it!

LindaCrocker

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?

Janet456

LindaCrocker - It's the same here in the UK.  Huge debates are going on about the thoughts of overtreatment of DCIS, so much so that they don't even test for ER/PR - so tamoxofen is not even on the table.

For myself, I was pleased to get out of it with minimum treatment and keep the rads weapon up my sleeve for next time if it's invasive.  Hopefully there won't be a next time - but who knows. x

Infobabe

 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.

Janet456

Good to hear your check was good Infobabe - must admit to already getting a bit jittery about mine in June/July. x