Can I have masectomy without removal of nodes?

Dogs, I had 21 removed a year ago, and am lymphedema free.

Jollelee, I'm not bashing your choices! Hope nobody else is. Just giving you my best opinion, which you did request from us. Best wishes whatever you decide!!

No problem! (((HUGS)))

no. in those days it wasn't even mentioned -1982-  in fact i had never heard of the word until i came to this web site.

the surgeon said nothing about exercise so i went to the library and learned about the spider crawl which i did off and on. then when i started running i was pumping my arms anyway so i am sure that helped.

So even if it has spread into the lymph system, you still will opt out of chemo and rads?

If it would make no change in your choice of treatment, then I see no reason to have them removed.

Research came out in 2011 that showed that women who've had a positive SNB may be able to skip having an axillary node dissection if they are planning to undergo chemo regardless.  The study showed no difference in survival or disease-free survival between those who'd had a positive SNB and went on to have an axillary node dissection, having more nodes removed, and those who'd had a positive SNB and didn't have any more nodes removed.

Axillary Dissection vs No Axillary Dissection in Women With Invasive Breast Cancer and Sentinel Node Metastasis    

Results  Clinical and tumor characteristics were similar between 445 patients randomized to ALND and 446 randomized to SLND alone. However, the median number of nodes removed was 17 with ALND and 2 with SLND alone. At a median follow-up of 6.3 years (last follow-up, March 4, 2010), 5-year overall survival was 91.8% (95% confidence interval [CI], 89.1%-94.5%) with ALND and 92.5% (95% CI, 90.0%-95.1%) with SLND alone; 5-year disease-free survival was 82.2% (95% CI, 78.3%-86.3%) with ALND and 83.9% (95% CI, 80.2%-87.9%) with SLND alone. The hazard ratio for treatment-related overall survival was 0.79 (90% CI, 0.56-1.11) without adjustment and 0.87 (90% CI, 0.62-1.23) after adjusting for age and adjuvant therapy.

Conclusion  Among patients with limited SLN metastatic breast cancer treated with breast conservation and systemic therapy, the use of SLND alone compared with ALND did not result in inferior survival.

After these results were issued, another report came out looking at the implications for the design of radiation treatment fields.  Traditionally the results of the axillary node dissection have been used to design the radiation field, based on the extent of nodal involvement.

Positive Sentinel Nodes Without Axillary Dissection: Implications for the Radiation Oncologist   In conclusion, on the basis of the results of Z0011, a significant proportion of patients with one to two positive SLNs and BCS can safely forego ALND. The majority of these patients do not need to be subjected to the short-term and long-term morbidity of ALND. The multidisciplinary approach of adjuvant systemic therapy and WBRT is important in reducing the risk of locoregional recurrences. Until additional data are available, including analysis of the Z0011 radiation fields, it remains our policy to assess the risk of microscopic involvement in the regional nodes and to target nodes that are at significant risk in the radiation treatment plan.Table 1 summarizes a suggested approach for radiation field design. Using this approach, we will provide patients with excellent locoregional control and, in combination with surgery and adjuvant systemic therapy, optimize the patient's probability of cure. The data from Z0011 also give additional justification for the use of BCS for patients with positive SLNs. The potential for avoiding ALND, coupled with the high rates of locoregional control that are associated with BCS and WBRT, should make this approach more appealing than mastectomy for most patients.

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joellelee, your situation is somewhat different since you haven't had the SNB. Did you have a needle biopsy of your nodes; is that how your doctors are certain that you have at least 2 positive nodes?  In any case, I would think that if you know you have positive nodes, the conclusions of these report would apply.  BUT, the reason that these reports say that it's okay to pass on removing more nodes is because the patients who don't remove more nodes still undergo the same treatment that they would get if it were found that there was more nodal involvement.  So because the patients have rads and chemo anyway, there is no reason to find out if more nodes are involved.

In your case, if I am understanding correctly, with 2 positive nodes you are not planning to have rads or chemo.  So the question then is whether finding out that you only have 2 positive nodes, or finding out that you have 10 positive nodes, potentially could impact and change your treatment choice. Certainly the long-term prognosis, and the benefit that you'd get from rads and chemo (benefit in terms of the reduction in your risk of mets / improvement in your odds of survival), could be very different if you have only 2 positive nodes vs. a large number. So in that case, having the axillary node dissection could provide very important information and impact treatment choices.  

What doesn't make any difference once it's known that you have positive nodes is whether you have a lumpectomy or a mastectomy.  The fact that the cancer is in your nodes means that it's moved beyond the breast.  So removing the breast has no impact whatsoever on survival rates.  No one ever died from breast cancer in the breast.  Breast cancer becomes fatal only when it's moved beyond the breast and settles in a vital organ in the body.  So once you know that you have positive nodes, removing the breast is sort of like closing the barn door after the horses have escaped.  (Sorry, not an analogy that I like but it does explain it best.)  There might be reasons why a MX is still necessary and/or a good idea, but the MX does not replace chemo under any circumstance (chemo is systemic and it's given to track down and kill off cancer cells that have moved into the body) and it does not replace rads in cases of nodal involvement. 

I would think if you're not doing chemo or radiation, it would be even more important to remove any lymph nodes that have cancer in then.  Otherwise, aren't you just leaving live cancer cells in your body? 

Joelle

Do not despair ...you are ahead of the game !
I had 2 clean nodes and no rads and have LE.

I had NO LE info.  You have a good awareness.

Get baseline measurements  BEFORE your surgery ( NOT by you , but a prof. on your med . team) and then some time after healing.

Consider seeing an LE therapist just once ( long after you are healed) for eval. and do all the smart things to prevent :
No massage

no heavy lifting right away

No needle pokes

No flights without compression

NO BP on that side etc ...

Hopefully, you will be just fine ! 
Best wishes and good luck to you.

Jollelee -- You sound almost just like me a few months ago.

I got rid of nearly every piece of plastic in my house. Got glass food containers. Stainless steel water bottles. began eating cancer-fighting anti-oxidents and swallowing supplements like green algea, broccolli sprouts and Melaleuca Cell-wise, expensive Vitality (multi-pill) vitamin packs twice daily -- and Super Green Food. Ate pecans and whole grains and cranberries. Drank pomegranite and blueberry juice. Ate berries until they came out my ears. 

Bought cancer videos relating to raw food diet and Gerson Therapy.

I kept thinking about the Civil War -- how brutal the treatments were -- they sawed off entire legs because they couldn't fight the gangrene... and before that they used to "bleed" people -- it all seems so barbaric now -- isn't cutting off breast tissue and killing our good cells with chemo and radiation the same kind of over-kill?

And then someone said something to me that really struck me: In five years they may have the answer. There may be a pill or an anti-cancer machine. But right now -- breast cancer is one of the most successfully treatable cancers... with current treatment methods. Breast cancer survivors had some of the best chances of any cancer patients -- with much longer lives and a much higher chance of dying (eventually) from something other than our breast cancer.

And, even if there is a cure in the next five years -- this is now. I have my breast cancer NOW. I must make the best decisions I can, based on the best research I can do, and do what gives me the best chance of recovery. 

You will come to your own conclusions. You are doing all the right stuff -- gathering information and asking questions and opinions.  

What Beesie said is spot-on: "No one ever died from breast cancer in the breast.  Breast cancer becomes fatal only when it's moved beyond the breast and settles in a vital organ in the body." That is why I eventually decided that my best chances, given that we live here - now -- in this time... were to combine naturopathic (holistic) and allopathic (western) medicine. 

I based many of my decisions on the Z11 trials... but ALL the women in Z11 had radiation. And I, like you, don't plan to have radiation or chemo. 

I just went through all this with my father. I was his caretaker for esophogeal cancer (chemo/radiation) before his (stage 4) brain tumor took him October a year ago. 

But when it is your own life at stake, I think it is easier to considering taking risks. 

What if this was your beloved sister or mother -- and you had to decide for her: would you decide skip what western medicine has to offer? Maybe so. Maybe not. That answer is a good reality check. 

Do you know your oncotype, BRCA and Ki67? ER and or PR positive? These answers could all play an important role in your decision, too.

My oncotype is low (13) and my cancer is extremely slow-growing. The radiologist I consulted guessed I have had cancer for at least 10 years -- even though my largest tumor is only 1cm. Because my oncotype is so low, and the cancer so slow growing -- newest studies imply that (with less than 3 nodes positive for cancer) radiation MAY do more damage than good. I loved that idea -- was really struggling with the idea of killing healthy cells throughout my body with chemo and radiation -- and since I have large breasts, the idea of radiating that large an area (plus he said he would want to radiate all level 1-2-3 nodes if I didn't have them removed... ) Man -- I couldn't wait to get out of his office. 

The original needle biopsy showed primary tumor and cancer in one node. (only one enlarged node was biopsied, and it had more cancer than my primary tumor). A later MRI biopsy also found a small papilloma in different quadrant of same breast.

I was concerned about lymph edema, and told my lumpectomy surgeon that I wanted her to remove only the single node that tested positive, the papilloma and primary tumor -- no additional nodes. She wanted to do a full axillary dissection. We compromised with sentinel nodes (2-3) and if something more looked amiss, she could take a few more -- she only took two. (the pathology report showed the second node had no cancer).

So my take on this was that that first little sentinel node deserved a medal -- she was the brave leader of my first line natural defense squad. The body is amazing -- and built to heal itself -- right? The lymph nodes are MADE to filter the lymph fluid and trap any mutant cells and bacteria -- encapsulate the bad stuff and get it out of the body. My first little node was a super-trooper.

But then we read the rest of the pathology. 3 additional tiny tumors -- and DCIS -- none of which were seen by previous MRI, CT-scan, multiple sonograms and mammograms -- were found in what should have been clear margins.

So -- now I needed a mastectomy.

I found a surgeon who agreed to remove the breast, and no more lymph nodes (in Denver). But they couldn't work me in until January, which would mean 2 surgeries -- the mastectomy with TE right away followed by my DIEP recon in January... meaning all new (first of year) out of pocket and deductibles -- as well as enduring two major surgeries instead of one.

I decided to shop for another set of surgeons... and ended up with PRMA in San Antonio (for plastics/DIEP) and Dr. Alexander Miller for the cancer surgeon. He told me that my plan was flawed. That MAYBE that one brave node got it all -- but another way to look at it was 50% of the nodes removed had cancer -- and that statistic didn't sound so rosy. 

He persuaded me that since I was not planning to have chemo or radiation -- we absolutely needed to remove a few more nodes to know where I stood. And, at the very least I needed to have hormone therapy -- because I am 100% ER and PR +... that treatment should block any stray cancer that may have lodged in bone marrow, pancreas, lungs... hopefully. 

So we compromised and he removed 11 more nodes (not the 30 or so that current "Standard of Care" would have dictated. NONE of the new nodes contained cancer... and that news is very reassuring -- I now feel even better about my choice for no chemo or radiation.

Lymph edema -- well -- I don't think so... but I do have some pain in the lower left arm (the side where the nodes were removed. It isn't uncommon to have pain while the lymph system finds new paths... and it is possible some minor temporary damage was done to tendons, nerve, muscle... hard to tell what my pain is about, but I am less than 4 weeks out -- and others have told me to not worry yet, that 6 weeks was their turning point.

Best of luck -- we each are on our very unique cancer journey. Medical science is not static, and our choices to step outside the bounds of "Standard of Care" is part of what feeds the change.

I keep remembering that 'scientists' once said the world was flat.  

Anyway -- just some thoughts -- and I applaud your willingness to gather information and consider outside of the box solutions.

Linda

I was concerned about lymph edema, and told my lumpectomy surgeon that I wanted her to remove only the single node that tested positive, the papilloma and primary tumor -- no additional nodes.

I had a  simple LX with learly stage uminal A cancer , no rads,  SNB with 2 clean nodes out.  I have LE.  We really cannot go strictly by number of nodes. I am not sure how much this should play in your decision.  As you yourself said - no guarantees.

I wish you all the best.

Take Care!

Joellelee~I went in for mastectomy with everyone thinking the tumor was 1.6 cm with 1 or 2 positive nodes. After mastectomy pathology report showed tumor was 5.6 cm, and there were 13 of 16 nodes positive for cancer. That made it a stage IIIc.



I couldn't imagine not throwing everything I can at this Beast! Before you make a final decision, as difficult as it is, wait until you get the final pathology report. You will have a better picture then of what you're dealing with.



Blessings

Paula

Joellelee, you are absolutely right the 40% - 50% reduction benefit from rads is the relative benefit; each individual needs to understand her own recurrence risk, without rads, to figure out what that actual benefit of rads would be for her. If you start out with a relatively low recurrence risk after surgery alone, let's say only 8%, then the rads might be able to cut that risk to 4% or 5%.  For some women that benefit wouldn't warrant the risks and side effects of rads.  On the other hand if you start out with a recurrence risk after surgery of 30%, rads would cut that risk to 15% - 18%.  Most women would probably opt for rads to get that level of benefit. Everyone's recurrence risk is different - key factors that influence recurrence risk are the pathology of your cancer (size, grade, focality), the surgical margins, your age.  While it may be true that only 1 in 10 women recur without rads, you have to consider that the women who opt out of rads usually are those who start out with the lowest risk. You may not be one of those women - that is what you need to understand from your doctors.  

Rads usually is a local treatment and generally the benefit of rads, in terms of risk reduction, is considered mostly in the context of local recurrence risk only.  But this is not the case when rads are given to the nodes, as would be the case for those who have several positive nodes. This study talks about recurrence and survival benefits from rads for those who have positive nodes:  Radiation impact in breast cancer  

"Conclusion: new paradigms of radiation therapy in breast cancer