Seems like the treatment is extreme

I understand how you feel.  Your post could have been from me a few months ago. (with the exception of regertting the mamo....i always thought that saved me from a more advanced case)

There are other radiation options that only radiate partial breast.  There is IORT which  radiates the area right near the tumor during surgery.   There is external beam partial breast ratiation, which is what I had.  The radiation is 2x per day for 5 days and it focuses the radiation right around the affected area...not the whole breast.   There are also Mamosite and other devices used for partial breast radiaiton that I think also require 5 days of radiation.  The vast majority of recurrnaces occur in the area directly around the original cancer, so it makes sense in many cases to limit the radiation to certain cases.   Others have reported trouble finding a Radiation Oncoligist to do certain of these procedures outside of a clinical trial.  The risk is that these partial breast techniquies have not been around as long as the whole breast radiation, so the long term data on recurrances may not be there.

I was ready to decline radiation until my RO recommended partial breast radiation. 

I was diagnosed with DCIS grade 3 last November. After 2 surgeries without clear margins, a team of specialists recommended a mastectomy. Not what you want to hear. I didn't hesitate. I am 6 weeks post op and I know for certain that I am cancer free and do not require any further treatment. I had no lymph node involvement. If I hadn't done it I think I would have been constantly worrying about it. Ultimately it is your decision. Best of luck on whatever you choose.

Oh girl. I feel your pain. This is something I still struggle with, despite undergoing all the recommended treatment (lump, rads, Tamox). But I know exactly how you feel about that mammo. I sure wish I could go back to those days before I learned all about breast cancer and how it might affect me. It has already had such a huge impact on my life - and we're just talking about a few specks in the milk ducts in the back of my breast, not an invasive tumor or anything. I wasn't freaked out about the diagnosis but the treatment was a huge distraction at work and a terrible strain on my relationship. I resented rads most of all, I have to say, even though I know it's a much better option than chemo. But still, like you said, as far as you know this is a dandelion. 

Beesie makes an excellent point about not really knowing if it's a dandelion until after your surgery, though. Unfortunately, you don't really know what you're dealing with until you get that final pathology report from your surgery. Then you will have a better idea of your risk. Other factors that play into your own personal risk include your family history and your age.

One thing that helped me a little bit was calculating something known as the Van Nuys Prognostic Index (VNPI) adjusted for age. You can only do that after you get your pathology report because you need to know your smallest surgical margin. This index assigns different points to your margin status, your age, the size of your dandelion, and your grade:

http://www.theeffectivetruth.info/wksht1.html 

Then with that number in hand, you can see what was found in previous studies in women with similar scores and their recommendations for you based on that score (just lump, lump + rads, or consider a MX): 

http://www.theeffectivetruth.info/brcavnpi.html 

Hope that is helpful. Unfortunately, none of us can turn back the clock and go back to living our normal lives. I am past my treatment and back to all my normal actitivies, but I still can't help but obssess about my next mammogram (scheduled for June).

I hope that you get some answers at your surgical consult. If you've ever been told you have dense breasts, you could ask about getting an MRI before surgery to get a better picture than the mammo. And if you have a family history and good insurance, consider genetic counseling and possibly the BRCA test. The more info you have, the better you will feel about these decisions.

What convinced me to start taking Tamox was the preventative effect on my non-BC breast. But even the MO who prescribed the Tamox told me the rads was what I needed most of all to cut my odds of a recurrence. When pressed, he gave me some impressive percentages that sealed the deal. But everyone's individual risk is different and if yours turns out to be low, you may have more options. 

AlaskaAngel,   Your post caught my attention.   You are certainly correct that I act out of uncertainty, motivated by balancing risk of treatment vs. no treatment.     This is the first I have heard of someone suggesting that one see an endocronologist.   When you say find someone who can 'relate the endocrine system balance to cancer'  What are you talking about?  Balancing estrogens?  Or something else?  Does a naturopath doctor usually do that?  If not, how would one find an entroconilogist that does this?

I very much prefer the proactive approach.  I have overhauled my diet, upgraded my exercise routine and am considering visitng a naturpath.  I would like to see any info (links) you could provide showing the types of things an endrocronologist could evaluate and remedy.

I can relate to this discussion.  After the needle biopsy showed cancer, I consulted with my naturopath who (while not saying so out loud) encouraged me to consider not doing radiation, but working with her to keep me cancer-free.  On the other hand, my surgeon (at the post-op) got very serious with me and said "if you don't get radiation, you are having a mastectomy."  None of these docs were aware of what the others were saying.  I felt like I only had the option of wbi or nothing (taking tamoxifen out of the discussion).  It felt like overtreatment or undertreatment.  Yuk.  I filled a yellow legal pad with pros and cons of radiation.  I finally, begrudgingly, decided I was open to radiation, due to the fact I was in my 40s.  Then, when I met the rad onc for the first time, I learned about pbi and that was it.  I became laser-focused on it, even though the rad onc said it would be great for me whether I got wbi or pbi.  I was eligible for the study, and randomized to get radiation.  It was a very tough time, though, making the decision to be open to radiation.  I didn't want to get all that radiation into my ribcage and lungs.  I feel very lucky that things rolled my way.  And I just passed the 5-year anniversary of getting radiation - all's well.

ejo1,

Right now that choice doesn't exist. Endocrinologists see people with diabetes, thyroid trouble, pancreatic issues, etc. They have never been trained to see patients for breast cancer.

The breast is just another gland in the body. We think of of glands that have cancer, and we stop thinking of them as glands at all because we are directed to surgeons and radiologists and medical oncologists. They have been trained to think about cancer and surgery, and radiology and chemotherapy.

If we want to understand the endocrinologic basis for cancer that affects the glandular system so that we understand better how to prevent those glands from malfunctioning in the first place, we are going to need to put conscious effort into training people specifically to see us and analyze us and treat our endocrine systems.

Be comforted by the reassurance that the system is changing, certainly not as quickly as you, and most of us, would like, but progress is being made.

Meanwhile, our choices are NOT changing.

A.A.

Beesie,

Let's get back to the question, then.

"Seems like the treatment is extreme."

The answer is,

Progress is being made all the time surgically, radiologically, and chemically. You are able to choose freely between these therapies.

Someone, someday, somewhere else (but never here or now) will address the question of extremes. It is never appropriate to address that question here, where someone is only allowed to focus on current medical solutions that are generally provided by surgical, radiologic or oncologic specialists who have as a rule never personally had cancer themselves or had to do treatment themselves, and I apologize for trying to consider that question seriously.

A.A.

Knowledge is a treasure, more precious than rubies. I hate the day I had my ultrasound to follow up the mammogram...but my only regret now is I didn't go in sooner. Please take the knowledge of what is going on in there and run with it. So many others diagnosed later and who want you to nip this in the bud (or boob!) and be done with it. I keep hearing radiation is not that bad and long term effects are few if any. And remember, long term is the goal for all of us! Good luck!

mnkid,

When I was diagnosed with DCIS in 2007, I chose to have a lumpectomy and pass on radiation based on my score on the Van Nuys Prognostic Index, after consulting with Dr. Michael Lagios, a world renowned DCIS expert and pathologist, who has a consulting service that anyone can use.

DCIS is often overtreated and everything done is to prevent the patient from getting invasive cancer. Having grade 3 DCIS does put you at higher risk. However, only you can decide what risk level you are comfortable with. Because DCIS is non-invasive, you do not need to rush into any decisions.

It may be a good idea for you to get a 2nd pathology opinion from Dr. Lagios or another expert pathologist. Doing that saved me from an unnecessary mastectomy for my DCIS.

Once you know what your doctors are recommending, you will also want to ask about and be clear what your risks are with and without any treatment you are considering. That way you will know if the harms are outweighed by the benefits of the treatment.

Please feel free to PM me if you have any questions. I am always happy to help in any way I can.

Hugs,

Sandie

Mnkid you dont want to look back some time from now and say "I should have".  Like Beesie explained and I for one had a dx of DCIS grade III and chose a  lumpectomy along with RFA instead of radiation.  When my final pathology report came back it was found there was a micro-invasion.  That changed the whold DCIS dx.  Bottom line is..........final path report tells it all.

hugs

Layla - even with masts. all breast tissues is not removed so there is potentially still some cancer cells left. Especially if nodes were involved.



Some cancers are fed (ER+) by estrogen. Tamox, arimidex, Femara block the uptake of estrogen so it doesn't feed the cancer cells. Even after menopause the body still produces estrogen and it is in quite a few foods.

mnkid, from what I read about the Metformin trial, I don't see how it is appropriate for you if you are looking to avoid excess treatments.  Surgery would still be required, plus you'd be adding Metformin prior to surgery. So it seems like it would be an extra treatment, not a reduction in treatment.  At this point, all that you know for sure is that you need surgery.  Once you have the pathology results from surgery, then you will have more information about your diagnosis and that's when you can assess whether any additional treatments make sense for you or not. Sandie made a really important point about asking your doctors about your risk level, both with and without treatment.  For example, if after surgery your doctors are recommending both radiation and Tamoxifen, ask what your recurrence risk would be if you had neither treatment, if you had just rads or just Tamox and then if you had both.  This will give you the information you need to determine if the benefits of the treatment are worth it for you, in terms of the amount of recurrence risk reduction that you will get.  Additionally, once you have your surgery, unless it's very clear based on the pathology that more treatment is necessary, getting a second opinion on the pathology from Dr. Lagios is a great idea. Many women here have done that. Dr. Lagios has the goal of helping women with DCIS avoid unnecessary treatments but he is also realistic about when additional treatment really is indicated.  So for someone like you who is concerned about over-treatment, he is a great doctor to speak to.

Layla, to your question: "If the tamox and arimidx prevent breast cancer wny do they give it to us after a bmx? How would stopping estrogen prevent cancer in another part of the body?" the answer is that for those who have invasive cancer, there is a risk that prior to the BMX breast cancer cells may have escaped the breast and moved into the body, either through the lymph nodes or through the bloodstream. If that happens, these breast cancer cells can take hold and mets might develop somewhere in the body, for example in the bones or the liver (two of the usual places were breast cancer mets develops). What develops is not bone cancer or liver cancer, but breast cancer. That's why Tamox and Arimidex are given even to women who've had BMX, if they had invasive cancer.  The purpose is to avoid the development of breast cancer mets in other parts of the body.

However, since this is the DCIS forum, it's important to point out that for women who have pure Stage 0 DCIS, if they have a BMX then no hormone therapy drugs should be required. This is because DCIS cancer cells don't have the capability of moving into the nodes or the bloodstream and as such, DCIS cells cannot develop into mets in other parts of the body. This is key differences between DCIS and invasive cancer.

In reading the posts here, I had thought that there was encouragement and support for not just accepting the status quo of present treatment. I had thought there was support for research to provide better solutions over time. I had thought that we were genuinely interested in progress and that "The system is changing, certainly not as quickly as you, and most of us, would like, but progress is being made."

So, I posted the study about the possibility and likelihood of making progress through endocrinologic investigative trial that accepts those with a diagnosis of DCIS. Otherwise, the only medical analysis one will get is from the people who are most knowledgeable about surgery, radiology, and medical oncology -- in short, the treatment that has made so little progress over time in offering anything but surgery, radiology, and medical oncology answers.

I am hoping that others will be more interested in increasing our knowledge about BETTER, less invasive ways of dealing with DCIS. (Especially if one is going to do surgery anyway.)

Another possible solution is offered in this thread. It too is based on the need for more understanding and application of endocrine principles:

http://community.breastcancer.org/forum/121/topic/781084

Feel free to disregard if these ideas seem unimportant to you.

AlaskaAngel