Lumpectomy with no further treatment

Thanks dsj,

It is good to hear from you because you have done the radiation. So you have better idea about it. I think in our next visit to surgeon I will talk to him about the SNB. My mother had core biopsy, It has been 2 months now, she is not fully recovered. still has got pain in her breast.

So your 10 treatments are left, please keep me updated.

Hi, I had a lumpectomy last year and opt out the rads. My dx DCSI stage 0, high grade, good clean margins,  ER-/PR-, 2 cm and 1,0 cm  tumors removed.

Now one year later new microcalcification were seen in my mammo and they want to do the stereotatic biospy, I really don't want do this type of biopsy again, it was awful experience .

Does anyone have gone through similar experience , with new microcalcification showing a year or so later? In the past I have had so many core needle biopsies, all came out negative and I am really hoping this one will be another negative result.

I appreciate any input. Thks. 

I only did lumpectomy + reexcision for my grade 2 DCIS. I did have to have reexcision to get clear margins but now that I have clear margins, I've declined radiation/Tamoxifen, because I REALLY REALLY want to have a baby. Actually I would probably decline them anyway in favor of diet/lifestyle changes, but I definitely will stay closely monitored (including with thermography, which is safe during pregnancy).

19 years ago my mother was stage 0 and had lumpectomy with no further treatment as per her onc and surgeon's suggestion [yes, 0 non invasive] a decade after that she had it in her lung.  5 Years later it was in her neck, and 4 years later bones and liver stage IV.  Yes it is the same cancer as they keep these samples frozen, so if/when I get to that stage, I will have some post treatment as that is my mothers one regret - listening to Docs. 

 I wish you all the best.

I agree with you about the biopsy.  I don't know which was worse -- the pain of the biopsy or the pain of the cancer operation.   I think those who get mastectomies don't go through quite so much preoperative hell as those who get a lumpectomy.

It was a shocker learning "oh, now that you've had the biopsy, we would like you to report for another equally painful procedure before the operation, and then surprise, one more!   It was like being burnt with hot fire over and over again.   My pre biopsy breast, which had no pain at all got extremely hot and inflamed for the biopsy and they didn't operate until about 10 days later so I kept thinking that if I had cancer before, now the very angry and inflamed breast had surely caused it to spread through the entire body. 

Today I advise everyone I know to get a mastectomy in both breasts instead of enduring the terrible pain of a lumpectomy in just one and figuring you'll just have to endure the whole thing once again for a mastectomy some time later.  I personally feel that surgeons should never be permitted to perform lumpectomies!   And the reason I think I should've had a mastectomy on "both" breasts instead is because one not only looks dumb but it's also a lopsided nuisance having to balance it off with gel.  But I can't blame my surgeon for the lumpectomy because I was still so confused when I went in that I hadn't yet made up my mind what I wanted and told him to decide for himself and I would sign whatever he put in front of me!

Oh, and make sure you ask your surgeon for a drain tube too if you don't want to go through the extremely horrible pain I did.   If you don't ask your grapefruit-sized breast will swell up to basketball size, people will hear the water swishing loudly at eveyr step  and your stitches will  rip out inside, way too early.  Oddly enough, of all the cancer articles I read beforehand, this was one thing not a single article told me to ask about so I assumed every woman got a drain tube.  That's definitely not true!   I feel so sorry for women who first learn they have cancer, but if you know for sure which procedure you want before you get the operation, and ask about the drain tube as well, I'm pretty sure your experience will be better than mine.

I also wish people had also been more honest and frank beforehand and told me that it would hurt like the dickens, because if you think it won't, you will feel angry afterward.  I felt as though I could never trust anyone again!  It's better to be fearful beforehand and find out it's not as bad as you thought than the other way around -- far better because then at least you are better prepared.  Oh, and it is true that some women don't suffer from nearly as much pain as others. It all depends on the size of the lump/s, the location, your sensitivity, and what nerves have to be cut.  Mine was a little worse than most I think.

"Today I advise everyone I know to get a mastectomy in both breasts instead of enduring the terrible pain of a lumpectomy in just one and figuring you'll just have to endure the whole thing once again for a mastectomy some time later.  I personally feel that surgeons should never be permitted to perform lumpectomies!"

Julie, I couldn't disagree with you more. 

The decision to have a lumpectomy or a mastectomy or a bilateral mastectomy is an extremely personal decision.  I don't think it's right for anyone to tell someone else what they should do.  While you may not be happy with your experiences and your choices, that reflects your situation only - it's the experience of just one person.  You have no way of knowing what the experience will be like for anyone else, nor how they will react emotionally to their surgical choice (whatever their choice may be). 

I appreciate that for many women, the right choice is to have a bilateral mastectomy.  By the same token, many women are happy to have a single mastectomy only.  And, based on the stats of all women with breast cancer, it appears that most (approx. 60% of BC patients) prefer to have lumpectomies.  For me what's important is that each woman make the choice that is right for her, based on the specifics of her diagnosis, a consideration of how she views risk (recurrence risk vs. the risks from treatments/surgery), her own look into the future (how will this choice impact her long term?), and her own assessment of the pros and cons of each of the options.  None of us know what is right for someone else and it's wrong to assume that we do or to suggest to someone else what she should do.

By the way, I had a single mastectomy, not by choice but by necessity.  I am extremely happy that I had a single mastectomy only, rather than a bilateral.  And if I'd had the choice, I would have had a lumpectomy rather than a mastectomy.  I've had 3 excisional biopsies over the years (this is the same surgery as a lumpectomy) and I would choose that experience anyday over a mastectomy.  But that's just me.  Obviously my experience was different than yours and as a result my choices would be different than yours... but that's the point.

Judy, I am so terribly sorry that you had such a terrible time. Some surgeons suck. And it's hard at the beginning to know what to look for.

But it really depends on the nature of our cancer. I had a single, well-differentiated lump, with almost no associated DCIS. Mastectomy would have been so totally overkill for me.

I had a lumpectomy, and, really, it was a piece of cake. The greatest discomfort I experienced was that I turned out to be allergic to steri-strips, and those little welts hurt like hell. My surgeon had been doing lumpectomies and SNB removals for so long, he was one of the participants in the clinical trials for SNBs, so he simply used blue dye in the operating room. So, no nuclear medicine for me. The downside was that he was a terrible explainer, and I had little idea what was going on, but I am so glad that everything has come out well.

For those of you trying to decide whether to have radiation treatment or not, Van Nuys classification can help you.  You may want to read, http://en.wikibooks.org/wiki/Radiation_Oncology/Breast/DCIS/Van_Nuys (see below)

Two doctors studied the influence of margins, age, lesion size and grade and how these factors combined could estimate recurrence and the need for radiation treatment.  Each of these factors had a score; for example, if you are 39 or younger, you get a score of 3.  (It's better to be older, lower score means lower recurrence rate)  You score each factors and add them together.  If your score is 4-6, there is no benefit to radiation treatment and your recurrence rate is 1%.  See chart below or go on the site to calculate your Van Nuys score.

Also, you may want to consider drinking 2-3 cups of soymilk a day if you decide not to take tamoxifen. A study in China, which was submitted to the Journal of American Medical Association (JAMA) showed that soy reduced recurrence and mortality rate of breast cancer survivors.  (see link below)  There is an optimum amount of isoflavone to ingest, about 20-60 mg -- too much is not optimum: not hurtful but not as beneficial.  The US did a number of studies as well though they were limited, some of which showed conflicting results, but the American Cancer Society concluded that it was not harmful as some of the non-scientific studies are reporting.  The negative was that some people got atypia (non cancerous lesions) but not cancer from soy.  One word of caution, soybean should be eaten cooked not raw as it has toxins.   (soy milk and tofu are cooked).  Finally, the study warned against getting soy from powder and supplements.

http://jama.ama-assn.org/cgi/content/full/302/22/2437 

http://www.nutritionj.com/content/7/1/17 

 

 Van Nuys Prognostic Classification:

*
o Group 1 Non-high nuclear grade without necrosis
o Group 2 Non-high nuclear grade with necrosis
o Group 3 High nuclear grade with or without necrosis

Original Van Nuys Prognostic Index (VNPI) Scoring Index Parameter 1 Point 2 Points 3 Points
Van Nuys Classification Group 1 Group 2 Group 3
Clear Margin > or = 10 mm 1-9 mm <1 mm
Lesion Size < or = 15 mm 16-40 mm > 41 mm
Final Score Group 1 3 - 4 points 3.8% Recurrence 93% 8 year disease free
Group 2 5 - 7 points 11.1% Recurrence 84% 8 year disease free
Group 3 8 - 9 points 26.5% Recurrence 61 % 8 year disease free

Updated USC / Van Nuys Prognostic Index (VNPI) Parameter 1 Point 2 Points 3 Points
Van Nuys Classification Group 1 Group 2 Group 3
Clear Margin > or = 10 mm 1-9 mm <1 mm
Lesion Size < or = 15 mm 16-40 mm > 41 mm
Age 61 or older 40 - 60 39 or younger
Updated USC / Van Nuys - Total Score Score Local recurrence 5-yr and 10-yr local RFS
4 - 6 points 1% 99% / 97%
7 - 9 points 20% 84% / 73%
10 - 12 points 50% 51% / 34%

References:

* 2003 Updated USC/VNPI PMID 14553846 Full text -- "The University of Southern California/Van Nuys prognostic index for ductal carcinoma in situ of the breast." (Silverstein MJ, Am J Surg. 2003 Oct;186(4):337-43.)
o Added age
o Score 4-6 : no statistical difference in 12-yr local RFS for pts treated with vs without RT
o Score 7-9 : 12-15% improvement with RT
o Score 10-12 : benefit with RT, but very high risk of recurrence despite RT
o Conclusion: Recommend excision alone for scores 4-6. RT for scores 7-9. Consider mastectomy for scores 10-12

Re soy, after six trips there, I can tell you that the diet in china is generally VERY different than the diet in western countries not merely with regard to consumption of soy products but consumption of meat and veg as well.

As far as pain with lumpectomy, I've now had a lumpectomy, a re-excission and a surgical biopsy.  I know pain levels and healing vary from person to person but honestly, for me, it really hasn't been that bad and not nearly as difficult as I would imagine it from a mastectomy.  A mastecomy is major major surgery--you stay in hospital at least over night and the recovery is long.  I was told to expect to be out for multiple weeks.  With my procedures, I got to go home and sit on my own lovely sofa and I only took pain pills for two days and then at night. 

I suspect it is in rare cases that a lumpectomy is as difficult for a woman as it would be to have a mastectomy.  In my humble opinion, its not a decision to be made lightly.

I had a lumpectomy on 11/17/2010 and plan no further treatment.  My cancer was Grade 2, but it was a single area, cribriform with no necrosis, and it was so small that the stereotactic core biopsy removed all of it -- the lumpectomy was all margins. This gives me, as I read it, a Van Nuys score of 5/12, so I feel comfortable with annual screening in the future and so does my surgeon.  My HMO doesn't recommend radiation in my case. I did have a consult with an oncology nurse-practitioner who offered me the option of tamoxifen for future risk reduction since I'm very ER+, but I've decided against it.  Here's why: I'm fat, sedentary, have major depression, a sleep disorder, and struggle with fatigue; but in the few months through a combination of meds and practices I've been getting a bit of a handle on some of those issues.  My instinct is that tamoxifen, in exchange for a very small reduction in future risk, would undo that progress and keep me stuck in a place where my present quality of life is not very good.  And after some reflection, I've realized that improving my present quality of life is what's most important to me, rather than adding a few statistical months to my hypothetical date of death. I'm sure I would feel differently about that if I had small children or some other situation where surviving was more important than thriving, but I don't.  These forums have been tremendously helpful to me in reaching that conclusion, for which I thank everyone here.   

Hi. I was diagnosed 10/26/10 Stage 1 DCIS less than 2 cm tumor. I had the lumpectomy done on my left breast on 11/8 and was Node-negative w/ clear margins, ER+. My Dr. is suggesting radiation and Tamoxifen but I am of the naturopathic and metabolic/nutrition therapy mindset and am anti-toxicity.  I am only 36 yrs. old and am PRE-Menopausal and have not had children.  I want to have children in the next two years so taking Tamoxifen for 5 years and having to wait until I am 41 to have a child IS NOT AN OPTION FOR ME.  I am not convinced that I have to do rad. or take Tamoxifen and feel there are less invasive, natural ways to keep my estrogen levels down and keep the cancer from recurring.  Shortly after surgery, I was losing a lot of sleep over my decision to not do any of the conventional prevention therapies, but not anymore.  I have done a ton of research in the past two weeks, I am drowning in the information so I wanted to share it and hope it helps.

There is so much natural alternative stuff out there: For now, here is what I am doing:

• 1. Taking 500 mg/day of Calcium D-Glucurate as a substitute for Tamoxifen.  See: http://www.dglucarate.com/Glucarate_Report.pdf
• 2. Peforming regular self-administered Estrogen level tests purchased from this site: http://www.easy-immune-health.com/estrogen-level-test.html
• 3. Consuming lots of Vitamin B-17 rich-foods like apricot seeds and cruciferous vegetables, taking enzymes and detoxing. Google the video, A World Without Cancer.  Truly eye-opening...
• 4. To monitor if cancer is starting up again in my body, I am doing the self-administered HCG urinalysis every 3 mos. which is discussed here: http://www.rethinkingcancer.org/resources AND here: http://www.navarromedicalclinic.com/index.php. 

I have made my decision and am aware of the risks of doing it my way, but FORWARD I GO... I believe in the mind and body's ability to heal itself.  Thank you everyone for all the helpful posts.  

olefin, how large are your margins?  Negative margins can be as small as 2mm or as large as 15mm (or even more) and that can make a huge difference.  Margin size is one of the most important factors in recurrence risk.  

Here's a website that explains the criteria that go into the Van Nuys index:  http://www.breastdiseases.com/dcispath.htm 

If I'm doing this right, you appear to be in the best category as long as your margins are greater than 1mm:

Your tumor size of 1.5cm or 15mm = 1 point.

Your grade and lack of comedonecrosis = 1 point.

The question is whether you get 1 or 2 points for your margin (I doubt that you'd get 3, which is for margins of <1mm). 

So your total is 3 or 4, which both put you into the best category.

Thanks, Beesie.



I don't know the size of the margin. The radiologist only wrote down negative margins. I'll be seeing my oncologist in a couple weeks. Right now leaving on a cruise but will be checking in as soon as we return.

Hi Laraby,

I can't give you advice but I can say, do your research and get to a point where you feel comfortable with the decision you make.. I lost sleep in the beginning over the fact that I totally didn't want any radiation or drugs after lumpectomy.. now I am totally comfortable with that decision but it takes a while to get beyond the initial anxiety.  Don't look back.  Just keep going forward.  I am confident that if I get another l 

Laraby, have you thought about getting a second opinion on the pathology?  There are a number of posts about the ambiguity of grading DCIS -- the experience of the pathologist and the amount of time she spends just working with DCIS seems to make a lot of difference.  Your insurance or health plan may offer you a free second opinion, and there's also a paid second opinion consultation service by Dr. Michael Lagios, who is a well-known DCIS expert, which several posters here have used.  If a second pathologist read your sample as Grade 2 rather than 3, I think you and your doctors might be more comfortable going without the rads.  Also, the kind of DCIS you have (e.g comedo, cribriform) and whether there was any necrosis can suggest a more or less aggressive cancer.  If your path report doesn't show that info, you might want to ask your doc why.