DCIS treatment confusion- please read thanks

Good Evening:

A couple of weeks ago, I completed radiation nearly two months after having a lumpectomy for DCIS in one breast.  I was also informed that I have atypical lobular hyperplasia in the other breast. I am nearly 58 years old.

The DCIS was low to intermediate grade and the margins came back clear. Just when I breathed a somewhat sigh of relief, the nurse at the facility where I had the radiation treatments (not my surgeon who is in a different hospital) informed me the DCIS is estrogen receptive. It was recommended that I consult with a medical oncologist, which I outright refuse to do.  I am totally against taking tamoxifin and any aromatase inhibitors.  A footnote though..my Mother succumbed from cancer (breast to bone) and my Father also succumbed from cancer; both before the age of 70.

For months, prior to and after the surgery, I was battling a cold and the flu. My body is worn down. During the radiation treatments, I had little problem exercising. Now, it's almost become a bit of battle retaining my stamina and breathing.  I feel so discouraged.  I keep telling myself that my body has been through a lot and, in time, I will eventually feel better. I still cannot look at the breast that was treated.  Before I was told about the hormone receptor, I was very very optimistic. Now, emotionally, I'm spent. My patience level is dimishing fast.

I'm considering consulting with a dietician or nutrionist to improve my diet; as I tend to eat a lot of cookies and starches. 

I tried to find an holistic medical oncologist in Midtown Manhattan, NY.  The few I did find online inject high levels of Vitamin C.  That to me does not seem like an appropriate treatment.

I did some online research and found the following supplements that were recommended:

COQ10 90-400 mg daily

Beta Glucan-100 mg Betal 1,3 1,6 D glucan

Resveratrol-400mg

Vitamin D 2,000-5,000 iu D3

Fish Oil-1,200-5,000 mg

Curcumin-up to 8,000 mg

L-glutamine

Does anyone have any information, thoughts, or comments about the supplements?

Thanks very much.

Babs,



I would agree that a second opinion could be useful. There are often discrepancies in analyzing pathologies-- thus was true in my case where 3 separate opinions yielded 3 different diagnoses. Very confusing!



I have been seeing an integrative oncologist in NYC for about 2 years now. My experience is that he is quite willing to go off the map concerning various treatments and is very knowledgeable concerning supplements. In fact, he has me taking most of the ones you listed. If you want contact info, please feel free to PM me and I'll also be happy to answer any questions you might have.

Kittenpaws I know how you are feeling, I went through the same turmoil last year agonizing over the correct decision, actually gave me chest pains.  All I can say is that, usually, if you have a lumpectomy then rads follow.  The only way to avoid rads is Mx which you said you are against so I guess you have answered your own question.

Unfortunately treatment for DCIS is almost the same as IDC but without the chemo which as explained to me by my BS, makes the decision so difficult.  If you had IDC you would have no choice.  DCIS apparently needs to go through another cellular change to make it invasive.  In many cases this does not occur but they cannot tell in whom this will occur.

I think that whatever caused the DCIS in one duct has the potential to wreck havoc in another duct so I certainly do not think it is wise to do nothing.  What I do know from personal experience is that scans are not always reliable.

Best wishes with making a decision you are at peace with.

Regards Lola.

Kittenpaws, I'm not sure if the tamoxifen worked or not.  I had a second primary DCIS (its signature was different than the first time around) rather than a recurrence.

Unlike the vast majority, I was one of those women that had just about every single side effect of tamox, concluding with huge hives all over my trunk for three months.  No one thought it could be the drug, even the dermatologist and allergist.  My MO agreed to let me quit taking it about 6 months shy of 5 years, and the hives went away.  I understand there is now a test that determines how well your body can metabolize tamoxifen.  My guess is that I don't metabolize it well.

I don't know if radiation the first time around would've made a difference either.  Because the other breast was filled with ADH (and wouldn't have been radiated), I suspect I just have one of those bodies that turns healthy breast tissue to something else.  Its my reality and I've come to terms with it.  Even with a bilateral mastectomy, I'll stay vigilant and do whatever follow ups my docs recommend.  

Hugs to you.  This is hard stuff.  

I also had a core biopsy recently that took 8 samples. I had slides analized by 2 different pathologists. The first one showed ADH/Borderline DCIS Stage 0 and the second one leaned more toward DCIS Stage 0.  It must have been completely removed by the Sterotactic Core Biopsy because my lumpectomy showed nothing at all. They did not retreive the clip because they beleive it deviated.  My post-op appt. is next week tired and confussed. Could it be possible i was misdiagnoised?, is it possible the core biopsy got everything? or was needle localization inaccurate? 

Thank you for responding and i hope you are still doing well. I am so confused sometimes i just want a mastectomy. I am 45 years old with two little children.    

Hi Everyone:

Earlier this year, I wrote about my DCIS. In September 2012, I was diagnosed with DCIS in my left breast. In December 2012, I had a lumpectomy and an additional biopsy of my right breast indicated Atypical Hyper Dysplasia.  In March 2013,  I went for 3 weeks of radiation (as part of "study"). I am refusing to take Tomaxifen and any inhibitors. I know that I was Stage 0, ER positive.  My DCIS recurrence was never assigned a grade.  Recently, when I spoke with my surgeon's nurse practioner, she told me that it is up to the person handling the biopsy whether or not to perform the test to determine the grade and not all insurances cover the test.  She also told me that if the margins are good and not small, the measurements are not given.

After my surgery, emotionally, I was really good.  Very optimistic, not feeling any pain.  The radiation treatments really dampened my spirit.  A few days a week, I exercise and a knee sprain forced me to dramatically cut back. After finally meeting with two medical oncologists (and, next month, plan to meet with another one) I just started taking some supplements.  It seems if I don't follow the route of the oncologist's suggestions, I'm on my own.  

Keep in mind, my Mother died from breast-to-bone cancer.  My Father and Maternal Grandmother died from cancer.  All three died before their 70th birthday.  I'm in my late 50s. This October, I'm due for my yearly mammogram. I still can't believe that my surgeon and radiation oncologist only want to see me once a year! In addition to my mammogram, I  practically begged the surgeon, my new GYN, and ro for a script for a sonogram and was turned down. I was able to obtain the script from my primary physician.

I realize that I also need to change my diet as I must cut down or cut out my sugar intake. I may meet with a dietician or nutrionist.

Lately, I find myself angry and losing patience. The bulk of my anger stems from these darned doctors.  If I don't follow their protocol, I'm on my own. One medical oncologist told me that she consider DCIS to be "pre cancer," while the other medical oncologist told me DCIS is cancer. Can you all please get on the same page! I'm sure that some of the anger is the uncertainty of Tomaxifen and inhibitors.  I feel that if I take them I develop a second cancer and side effects, that I screwed myself.  If I don't take them, and I develop a secondary cancer, then what?  In addition, a close and dear friend of mine passed away from throat cancer which has greatly saddened me.

Has anyone else experienced anger and doubt too?

Thanks.

Hi Ballet12:

You are lucky that your physicians are gracious about it.  The only one who is not against me is my primary.  Thank goodness she gave me the script.  I'm even changing the location of the mammogram from the hospital to the facility where the DCIS was discovered on my annual mammogram last year.

Anytime I read of a recurrence, it really rocks me. I find it interesting that follow-up treatments are considered "optional." 

Take care!

Ballet12:

I wanted to speak to another surgeon regarding the Oncotype test but, unless I need surgery, no surgeon that I have contacted will see me. I had no knowledge of the test until I read about it on this Web site.  

I didn't even know that I was ER+ until I met with my radiation oncologist.  Noone from my surgeon's office informed me.   I didn't know that I had to meet with an mo. Recently, I read an article written by my surgeon that DCIS patients should have a mastectomy.  Prior to my surgery, when I ask her about it, she kept saying that I did not need one.

When I met with the one of the mos, she told me that another reason why the Oncotype test may have not been performed is that once the results are known, is that she would not know how to treat me.  Are you kidding me?????  

At times, I feel as if I'm living a nightmare. I can't seem to get any answers.  I may try and contact a surgeon in Brooklyn, NY or another in Manhattan to see if he will see me. I think I'll call my health insurance company to see if they will cover the test, but, I remember when I was asking questions about radiation therapy.  The said yes to everything, but, in reality, that was not the truth.
Thanks!

Babs2 - just to share my experience, I wasn't offered the Oncotype test even with some small IDC (the area of invasion was <5mm which is the cut-off my doctor uses), and they don't ever do it on pure DCIS.

As for Tamoxifen, I did consult with a MO who laid out the risks and benefits and said essentially it was up to me.   I'm only 45 (so have many years ahead of me to worry about it) and have no particular risk factors relating to Tamoxifen, so felt it was worth trying it and so far (4 months), so good.

Considering I have a friend who had a BMX for dcis 8 years ago, who didn't take it who recently found out she has Stage 3 invasive (not that Tami would definitely have prevented it) - this was a new primary for her, I'm glad I made the decision I did.

I should clarify - my doctor doesn't ever do it; apparently some do but it is not standard practice at this time.   Just didn't want to give the wrong impression.

Thanks!

Ballet12:
According to what my radiation oncologist noted, according to my mammogram, my DCIS grade was low to intermediate grade involving intraductal papilloma (oy!). It was solid and cribiform types with intermediate nuclear grade and moderate necrosis.  The pathology demonstated DCIS in 4/11 slides examined it states the above except minimal necrosis is indicated. There was calcification but no involved surgical margins. Staining demonstrated 100% ER. Atypical Lobular Hyperplasia was diagnosed in the other breast.
Thanks again all!