Lumpectomy only

kittylee

Since the first week in March, I have been lurking here absorbing everything breast cancer.  Thanks so much to all who post.  You are a great help to a newbie like me!  After consultations and  2nd opinions on pathology, breast and plastic surgery, gene testing and MRI testing, I have made my treatment decision.  I've decided to have a lumpectomy with extra wide margins (very small focal area, 3mm) as I am electing not to undergo any radiation or hormone therapies.  It feels great to come to a decision today and I am comfortable with it.  My question for DCIS board is: Am I in the minority deciding not to accept the "gold standard" of treatment for DCIS?   Or are there alot of you out there?  Would you share your stories about your decision to go with Lumpectomy only?

Emaline

I don't know that there is a gold standard of treatment for any cancer.  I think it depends on so many variables and that is what they need to look at, what you need to look at it, and make the best possible choice for yourself based on the information that you have.

I found out today a woman at work had a lumpectomy and they removed tissue about the size of my fist, I couldn't say what that is, but it is larger then the 7cm that they removed in my biopsy and she was told that they had clear margins and she did not need radiation or Tamoxifen or anything else.  She is very happy and quite satisfied.

bevin

Hello Kittylee,  I am happy you came to a decision and are comfortable about it.  Do you mind if I ask if all your oncology consults were comfortable with you not pursuing the standard of care for DCIS as well? Did they recommend you receive radiation ? 

I didnt have DCIS, I had Invasive BC with an accompanying second site of  cancer from the primary area that was DCIS.  The DCIS was over an inch away from my primary tumor.   I know you didnt ask for advice, but I wish I could persuade you to reconsider and accept the NCCL cancer guidlines for recommended tx.  Unfortunately, I know several women who had DCIS and didn't complete radiation TX and now are in a difficult place with a re-occurrence and a much later stage of cancer having developed.  As  DCIS is still in the duct, the benefit of added radiation is it kills any remaining cancer cells that may be lingering in other areas nearby and too small to see yet, but hoping to develop.

I know several folks will chime in with differing treatment choices and those who have followed your path; I hope you don't mind my sharing my thoughts.

SJW1

Hi Kittylee,

You probably are in the minority in making this decision because many people want more aggressive treatment. However if you are comfortable with this, it is a perfectly reasonable decision. Actually many DCIS textbooks list lumpectomy only, as one of the options for DCIS patients.



After being diagnosed with DCIS in 2007, I made exactly the same decision as you did, lumpectomy only. I did not have the courage to make this decision on my own, so I consulted with Dr. Michael Lagios, a world renowned DCIS expert and pathologist, who has a consulting service that anyone can use. He used the Van Nuys Prognostic Index, created by Dr. Mel Silverstein and himself, to calculate my recurrence risk, without radiation, at only 4 percent. With such a low risk, the 50 percent risk reduction that radiation typically provides, was not worth it to me. He also explained to me that the absolute risk reduction of taking tamoxifen, according to the latest studies was at best only 2 percent for DCIS patients who had good margins. So I passed on that also.



The nice thing about not needing radiation now, is that if you ever have an invasive recurrence, you still have that option. Since radiation can only be used once, it makes more sense to me to use it for IBC than DCIS, if you have a small amount of low grade DCIS and you get good margins.



Congratulations on your decision. I hope your surgery goes well and you get great margins.



Feel free to PM me if you have any questions or feel the need for support in your decision.



Hugs,

Sandie

louishenry

I had DCIS in 2007 and radiation was not recommended for me. My DCIS was very small and not aggressive and was removed with one centimeter margins.  The lumpectomy did not have any residual DCIS as it was biopsy removed. Tamoxifen was optional. I decided to try it and it has not been a problem. I rotate mammo/us every 6 months with an MRI. So far, so good.

It would be highly unusual for you to have a micro-invasion or IDC given the small size. However, you won't know the full story until after the lumpectomy.

Good luck to you.

CandDsMom

Hi Kittylee - Another thing that might be helpful to get before the lumpectomy is a breast MRI. Sometimes it picks up other areas of DCIS/cancer that the mammo missed.  Especially if you are thinking you would like to defer radiation, it would be good to know that you are not missing any "skip" lesions of DCIS (DCIS often is not continuous down the duct - it can skip spots while it is growing).  Per my understanding, rads is used for this reason - to eradicate any stray cells that are hanging around.

Best wishes in your decisions 

momzr

I am a member of the "lumpectomy only" club and here's what happened in my situation.  I had a diagnosis of DCIS -- on left breast in July '08 - this was after a digital mamm which showed a cluster of microcalcifications followed by a lumpectomy/surgical excision.  Mine was a very tiny, tiny area of DCIS (1.6 mm -- Yes that says mm NOT cm - so less than 1/8th of an inch in size - even smaller than your small focal area) with nothing identified as comedo and no necrosis and I had clear margins after the surgical excision/lumpectomy.  I have not had any additional treatment besides my excisional biopsy in July '08 which got that tiny area of DCIS out.  At follow up appt. a week after the biopsy, a medical oncologist spoke with me and told me that my tumor was sooo tiny he thought there was a miniscule chance it would cause me problems down the road and he did not recommend radiation therapy or hormonal therapy with their associated risks and side effects for my particular situation.  He actually told me I was not to lose sleep over this or worry about it and he never expected to see me again.   I also met with a radiation oncologist who wavered a bit on his recommendation, (seems I was sort of in a 'gray' area on rad treatments mainly because of my age at time - 46 - and one margin although clear was 'close') but ultimately told me after we had a long discussion that I get a pass on this and with my particular circumstances that if I were his wife, he would NOT treat me with radiation.  Therefore, I decided against doing anything more except for close monitoring with mammograms and MRI's as needed. Since that time I have had both follow up digital mamm on my left side in December '08 and a follow up MRI in Feb '09 &'10 and March 2011 as well as a regular annual bi-lateral digital mamm screening on both breasts in June '09 and June '10 --  with nothing 'alarming' showing up on any of these monitoring tests. I am fine with being monitored closely (just don't find anything more thank you very much!)  I plan to continue with bi-lateral annual screening mamm on both breasts each summer and the annual Breast MRI's to follow up with things.  While I do not feel I am out very far from original diagnosis, so far, so good in my particular case.

Kezzie62

My journey started with just a lumpecotomy,  I wish I had done more then as I may not be dealing with a higher stage and BMX.  You have to work out what is right for you and hope it is the best choice..

Kezzie

edwards750

Agree with you JB...my BS did the lumpectomy only to find out from the Path report that a micromet appeared in the SN and I had to have another surgery to even the margins so no you can't plan like that ahead of time. Everything pretty much rides on the Path report. My husband and I questioned my BS as to why he had to go back and even the margins and it was because what they see in surgery and even with a Path on stand by appears to have covered all the bases. It is not unusual for the Path report to be different than what the BS initially thought. They do a lot of cutting and dicing so their tests are far more invasive. Regardless, we all would be interested in knowing what your BS says. Keep us posted. Diane

kittylee

Thanks to all of you for your input thus far.  Please, please continue to share.  Let me be a little more clear about my statement about "extra wide" margins.  At this point, with the further testing (including the MRI) showing nothing of further concern, I shared with my BS that if the lumpectomy pathology was equally "as good" that I would not be doing radiation.  He concurred and stated that knowing this in advance of the lumpectomy that he would be taking tissue for an "extra wide" margin.   The radiation oncologist did recommend whole breast radiation as expected.

OldOakTree

Hello Kittylee,

Eight years ago this month I had the mammogram that turned my life upside down. Calcifications were seen, I then had a lumpectomy (was told I'm not large enough for a stereo biopsy) and was diagnosed a week later with DCIS.  It was just under 4 mm and intermediate grade.  I was told I could have a mastectomy or radiation or rads/tamox or tamox or just very close follow up.  I saw several doctors and the only one who was really adamant about the radiation was the radiation oncologist.  In was a very difficult decision.  I didn't want radiation so it really boiled down to an all or nothing thing for me, either mastectomy or good follow up.  In the end I decided to go with good follow up care.  I alternate MRI with mammo every six months.  I also see a nurse practitioner at the oncology office every six months.  So far so good!!! 

By now you've probably seen the VNPI and it sounds like you have a very low score at this point, though of course as you know nothing is sure until the final path report.  From reading what you wrote it looks like you have done your research and are very comfortable with you decision.  That, and having a doctor you like are very important in this so called "journey."  I think it's good you made this decision before your surgery so that the surgeon can be aware of this and not scrimp around and try to take as little as possible so as not to totally disfigure you, but rather take a little extra so you will have good margins. Even though I am rather flat and the surgeon took a good sized chunk it is still barely noticeable. 

To answer your question, yes, those of us who have not had rads are in the minority among DCIS people.  But that is with everyone grouped together.  If you take the portion who scored low on the VNPI there is a larger proportion who do not have radiation.  I do not know exactly how many have what kind of treatment at this stage but if anyone does know please pass that info along.  I think it would be interesting and helpful to know.

If I had it to do over I may have opted for mammosite radiation.  That was never offered to me and I wasn't aware of it at the time.  I am a worrier and a big time hypochondriac so doing nothing may not have been the best route for me.  Having said all this I have an appointment with a surgeon next week to discuss having a mastectomy.  I've had continual discomfort in the area of my surgery and no one can tell me why.  I've asked to have a biopsy but they say they can't feel anything and nothing shows on the mammo or MRI so they don't know what to biopsy.  At this point I'm fed up and tired of worrying.  If a mastectomy is the only way I can get some relief and assurance there isn't anything more sinister in there, then that is what I will have to do.  Hopefully, the surgeon will be able to do something for me so I don't have to go that route. 

Oh yeah, one more thing, as far as tamoxifen doctors have wide opinions.  My oncologist didn't want me on it, she said the risks outweigh the benefits.  However, my surgeon said he strongly recommends it.  My ob/gyn said to go with what the oncologist wants and when I saw his partner when he was out one day,  she was ready to write out a prescription right there and said I must be on it!!!  Hold on, I though, my oncologist is telling me not to take it and your are going to write a prescription for me anyway?  Evista is another option.

Sorry, I didn't mean to go on for so long.  If you have any questions - ask, ask ask!!  We're all here to help.

Eloise

kittylee -- I also had a small area of DCIS, small enough that it was completely removed in the original core biopsy so that the lumpectomy was all margin.  My surgeon recommended no further treatment, but referred me to oncology for followup.  The medical oncologist offered tamox but was neutral about it.  The radiation oncologist recommended radiation; when I pressed him on that because of the VNPI and the surgeon's rec, he met with the tumor board and told me there was no consensus.  Some docs thought rads were not necessary, some thought they would be a good idea, no one was really saying "must do" or "must not". 

I had been comfortable with the idea of doing no further treatment, but I did go with the radiation, primarly for practical considerations.  Right now I have very good insurance and a secure and not very demanding job with a huge amount of sick leave, so it was a relatively convenient time to have the treatment.  I don't regret it, although I have had more fatigue issues than my doc anticipated and I'm still not back to full-time.  But if my circumstances had been different, I wouldn't have had any reservations about passing on the rads. I don't think you should worry about declining treatment as long as you do good follow-up monitoring, and are open to the possibility of changing your plan if there's something different in the biopsy results. 

AnneWisc

JBinOK wrote:

The problem is you can't select "...a lumpectomy with extra wide margins...."The surgeon cannot see at a cellular level.  The breast surgeon can remove tissue, but until it is examined by a pathologist, they have no idea if the margins are clear at all.

 Actually, I did press my surgeon to go for extra wide margins, my area of DCIS was only about 4 mm, but I told her to go for broke and we ended up (on final pathology report) having clear margins of 1.4 cm (14 mm) on all sides!  Much better than the 2 mm that they would consider "clear margins."I think it's important to tell your various onc docs what your values are.  Do you care most about body image, peace of mind, fewest side effects, etc.  My reason for going with lumpectomy, not mastectomy, had nothing to do with body image, but rather the feeling that a mastectomy would involve a lot more healing, scarring, possible lymphedema, chronic pain, etc.  I have a lot of disabilities already so balancing all those factors mattered to me. 

Zmeister3141

Kittylee....I just had a lumpectomy only.  I have refused radiation.  I am going to follow the Ketogenic way of eating....very little carbs or sugar, but instead, good fats, such as avacado, macadamia nuts, real cheese 100% such as Sargento's,.  Our good cells can get energy from these good fats, and do very well, and this is actually very healthy, "clean" eating.  Can have mostly these good fats, medium amounts of protein, and then veggies.  I feel great.  Cancer cells can't survive on the fats....need carbs & sugar....so they die !!!!      I am scheduled to have my sentinel lymph nodes removed in a couple days....and now I am having 2nd thoughts.  There is a horrific "radioactive" shot given to your breast, 2 hours before surgery, while you are fully awake, that is supposed to feel like a hot fire iron or cigarette being put out on your breast...wonderful.  Plus there is the 20% chance that you get lymphaderma (sp?) in your arm, because the fluid has no where to go, and your arm becomes permanently painful.  They make it sound like it only happens to "some" women, but a lot of these women that get the permanent arm pain say they really didn't expect to get it.   Does anyone out there know statistics of just having a lumpectomy, with no radiation, and no sentinal (main) lymph node check?   My lump was 1.7 cm, they got it all, with wide clear margins.  My lymph nodes "feel" fine from them checking them, and also appear to be fine via ultrasound.  There is always the possibility of seeing some cancer in them under the microscope.  My "top ten" doctor is also telling me that she will take all the other lymph nodes out, if the main sentinel nodes are cancerous.  Great....that would be completely dibilitating.  Don't know what to do.  I feel great, and feel like I want to skip all this invasive stuff.  Anyone out there, that has done the same?  Thanks!

Beesie

Do you have DCIS or invasive cancer? This is the DCIS forum so I would assume DCIS except with DCIS there is no need to check the nodes so since you are scheduled to have the SNB... Invasive cancer, however, is very different. I had just a tiny 1mm micro invasion of invasive cancer, and my risk of nodal involvement was approx. 10%. I have no idea what your risk would be; the size of the tumour is one factor, but the pathology (grade, hormone status, etc.) is even more important. As for the fact that your nodes feel fine and the ultrasound appears clear, that's doesn't mean much. Cancer cells are microscopic so there's no way to know if you have nodal involvement without actually removing and dissecting the sentinel node(s).

Diet? If you read this board for a while you will see that even people with the best possible diets develop breast cancer. Eating "clean" is good of course, but it's not going to kill cancer cells.

If in fact your diagnosis is invasive cancer and not DCIS, I'd suggest that you repost your questions by starting a new thread in either the IDC forum or perhaps the Surgery forum, since your questions relate to surgery. You'll find more people there who can offer advice and their own experiences; DCIS women don't have to address the issues that you have, since DCIS can't travel to the nodes.

littlejukie

Hello,

What was your stage of BC and what kind? I had DCIS stage 0 grade 2, and my surgeon did not remove any lymp nodes. My surgeon did a second lumpectomy to get wider margins so I would not have to take radiation and I chose not to take tamoxifen.

Julie

littlejukie

Hello,

What was your stage of BC and what kind? I had DCIS stage 0 grade 2, and my surgeon did not remove any lymp nodes. My surgeon did a second lumpectomy to get wider margins so I would not have to take radiation and I chose not to take tamoxifen. Wishing you the best....

Julie