Refusing radiation treatments?

Im guessing where the confusing may be coming from with Jo-Beth is that she honed in on the subtitle of "refusing radiation treatments" and also mentioned how she is forgoing chemo and she posted it in the DCIS forum.

Jo-Beth, from what you have posted, you never mentioned that you were Dx-ed  or are even claiming that you were Dx-ed with DCIS, but rather Stage 3 triple negative cancer that was removed. Is that correct?

I think it's more just an misunderstanding of how the forums and the subthreads are set up. Perhaps if you post in the Triple Negative or the IDC forum, that would help clear up the confusion.

God Bless!! 

Jo-Beth... I am glad you found your notes... given that you do indeed have GRADE 3, IDC and have only had a lumpectomy, if you do not have radiation OR chemo you run the risk of a recurrance by about 50%. Grade 3 is very aggressive, and lumpectomy alone is never used for IDC... you should consider strongly getting radiation or chemo or a mastectomy. Now the suggestion of chemo makes sense. I too had clean margins. I too had a simple tumor. But I also had a microscopic amount go to my node. I therefore chose chemo (as suggested by my MO) and was prescribed rads. I chose MX instead, but knew I had to do something.... and mine was grade 2, not 3.

Jo-Beth 

Thank you for adding the new information.  

IDC, grade 3 is where the rubber hits the road so it is time to get real and take the measures to preserve your life.  

I appreciate you wanting to add levity and there is a time for that, usually when you have had some victories.  There is a hilarious thread somewhere on this board and if I can find it I will post it.  It would brighten anyone's day. 

Jo-Beth, I'm glad that you found your notes and that some of this is becoming clearer now. As for the pathology report, unfortunately usually it's something that we have to ask for; it's pretty unusual that a patient would be asked if they want a copy and it's really unusual that it would just be handed over. I guess most doctors still have a bit of that old-time mentality that patients don't need to know too much!  

I appreciate too your previous confusion over the term "invasive". I was pretty sure that you were thinking "metastasis" when we were talking about "invasive". The word "invasive" does make it sound as though the cancer has "invaded" into your body but in fact the term really just refers to the potential of the cancer, i.e. it has the potential to invade into the body. (DCIS, on the other hand, is not invasive and therefore cannot invade into the body.)  "Metastasis" (or "mets") is the word used when it's known that there is invasion into the body.  

Fortunately there is no reason to believe that you have mets.  However because your cancer was invasive, it did have the potential for a few cells to break off from the main tumor and invade into the body, and this could have happened before the cancer was surgically removed. Even if all the cancer was fully removed from your breast, and even if your nodes were clear, if a few cancer cells did break off and entered your bloodstream before you had your surgery, then you can still develop mets. That's why chemo was recommended by your doctors.  The role of chemo is to track down any of those rogue cancer cells that might have broken away before surgery, and kill them off.  Chemo isn't a guarantee that you won't get mets, but it can significantly reduce the risk.  My suggestion is that you talk to your oncologist about this. I appreciate that you don't want chemo and you don't think it's necessary.  But please find out from your oncologist what he estimates your risk of mets to be based on the pathology of your cancer.  Then ask how much chemo would reduce your risk.  Make your decision on chemo from there.  

As for radiation, the one area of concern that I see from your notes is that your margins were only 2mm.  Most doctors consider that to be the smallest acceptable margin - anything less and they usually recommend more surgery to get better margins.  If you had wide margins - 'ideal' margins are 10mm but most of us don't get that - then your risk of recurrence, even with a grade 3 invasive cancer, might be quite low, particularly if your tumor was small and well-contained.  But with only 2mm margins, your risk of recurrence might be quite high.

Think of a bullseye. Your cancer is the red circle right in the center.  The margin is the first circle outside of that - let's say it's a black line that runs all the way around the center red circle. If the black line is close to the center red circle, it's possible that a few red cells might have broken loose and spread beyond the black line.  But if the black line is far from the inner red circle, then it's a lot less likely that any of those red cells might have scattered that far and moved beyond the black line.  The distance between the red circle and the black line is the margin size. A 2mm margin is very small so this means that the risk that some cancer cells might have moved beyond the line of the margin is quite high. This means that some cancer cells might be left in your breast; if that's the case, this will lead to a recurrence. I have no idea what your recurrence risk is or whether it could be as high as the 50% that's been mentioned - recurrence risk is based on a combination of many different factors related to your pathology; it's different for everyone.  To know your recurrence risk, you need to ask your oncologist.  What I do know however is that whatever your recurrence risk, radiation can cut it by about 50%.  So if your oncologist says your recurrence risk is 10%, radiation can cut it to 5%.  But you might be okay living with a 10% recurrence risk and you might decide to pass on radiation.  However if your oncologist says that with such narrow margins your recurrence risk is 30%, then radiation would be able to cut that to 15%.  You might find it a lot easier to live with a 15% recurrence risk than a 30% recurrence risk.  

Please talk to your oncologist about this too.  Ask for a copy of your pathology report, and ask for detailed information about your risk levels, both your risk of distant recurrence (i.e. the development of mets somewhere in your body outside of your breast) and your risk of a local recurrence.  With that information, you can make an educated decision about whether or not you want to pass on chemo and radiation, or whether you change your mind and decide to have one or both of those treatments.

Even though we now know that you don't have DCIS, please come back here to let us know what your pathology report says and what your oncologist says!  And good luck!

Dakota, I just responded to your post in the other thread here in the DCIS forum. Whether or not you have lymph node involvement makes no difference to the type of surgery.  The lymph nodes are located beyond the breast so whether you're better off having a lumpectomy or a mastectomy isn't going be influenced by what's going on (or not going on) in your lymph nodes.  If you do have lymph node involvement, then it's other treatments such as chemo and hormone therapy that come into play.  

This is the DCIS forum and I notice from your signature line that you have IDC.  That's important to keep in mind as you read about the treatment decisions that some of the others posting here have made. Your situation is different from those who have DCIS because, like Jo-Beth, you have invasive cancer. So for you, in addition to surgery, chemo might be a factor. Chemo does not come into play for those who have only DCIS. Hormone therapy also plays a larger role for those who have invasive cancer, since it can reduce the risk of both a local recurrence (a benefit for DCIS women too) and a distant recurrence (i.e. mets, which DCIS women don't have to worry about). Even radiation might play a different role for you, if it turns out that you have lymph node involvement, because radiation might be recommended not just to reduce the risk of recurrence in your breast, but also to address concerns about the nodes.  These are all things to keep in mind and consider as you read about what how others here have made their treatment decisions.

Dana Farber has an excellent reputation.  Let us know what happens on Thursday. And if you don't have a copy of your pathology report from the biopsy, be sure to ask for one. It's always good to get copies of all your reports so that you can refer to them later.  

I don't remember if I chimed in here or not, but I was one who DID refuse radiation, despite borderline grade 2 or 3 tumor, large, and a couple of nodes involved initially. I had lumpectomy & chemo. First PET scan after chemo showed NED. The rad onc said the risk of recurrence would be reduced by 30% (relative risk) or just under 10% (absolute risk). She told me the risks of pulmonary, cardiac, or nerve damage was about 20%, but not usually severe (only about 5% are severe). I decided that since I had already lots of SEs from the chemo (neuropathy) that were significantly adversely affecting my life (and still do) that I was not going to add to that.



Fast forward 6 months: recurrence. Had BMX, ALND. Still not doing rads as RO guaranteed me lung and skin damage, high risk of nerve damage to my dominant arm, and still would only reduce further cancer risks by 10%. So I am not doing it, but I am choosing quality of life NOW over prolonged life with possible poor quality. I know there are no guarantees either way, but I just wanted to let you know that there are a very few of us who have finally taken over as the decision-maker in our own care, using our OWN values and not those of our health care providers or well-meaning family or friends. I may not survive cancer, I may get mets, but I will deal with them IF and when they occur, and meanwhile, I am living each day with more joy than I did before my diagnosis. I am now making decisions that are right for ME, and not for anyone else.



I am also not judging anyone here for choosing any treatment options - breast cancer is at least 10 different diseases, and there is no "one treatment fits all" - some women don't do anything and survive more than 20 years (my sister's MIL did nothing and is still doing great!).



Best wishes to all of you as you continue your journeys.

amazing Linda, but you sound like your decision was your own to make, I so wish you the best of future

Linda~,

What is internal radiation

pnmg2 - ill message you about it!

I remember seeing the info on the braco radiation and asking my radiologist at the time.  He has done a lot of it but said I was not a candidate.  I confess I did not ask why as I was in the dazed time.....it seemed good to me as only 5 days but think it had to do with the location of my DCIS junk

Shayne~

I looked atbthe website, thanks. Do I have this correct to ur knowledge .... I won't be able to tell if I am a candidate until after lumpectomy??

The following article describes guidelines from the major professional society of radiation oncologists for Accelerated Partial Breast Irradiation (APBI) based on the data available. Brachytherapy is one method of doing APBI.

http://www.sciencedirect.com/science/article/pii/S0360301609003137

Criteria for being "suitable" for APBI include patient age >= 60 years old, no BRCA 1/2 mutation, tumor size <= 2 cm., Stage T1, margins negative by at least 2 mm., no lymph-vascular space invasion, ER+, unicentric only, clinically unifocal with total size <= 2 cm., invasive ductal or other favorable histology, not pure DCIS, no extensive intraductal (i.e. DCIS) component, pathologically node negative, sentinel node biopsy or axillary lymph node dissection. The article goes on to loosen some of those criteria in defining a "cautionary" group for whom APBI may be considered, as well as a group of patients for whom APBI is "unsuitable".

Some radiation oncologists are more favorably inclined toward APBI than others and use of these guidelines, especially for the "cautionary" group will vary.

A friend of mine was recently told that her cancer came back-it is now in her chest wall. Back in 1998 when it was early satge, the doctors did a double but with no chemo, no rad's-she did reconstruction and was told she was now cancer free! Imagine her shock! They just tried neo-adjuvant chemo with 6 Taxol and 2 AC's and it didn't do anything so she is going to surgery-they will have to scoop out the entire pectoral muscle attached to the chest wall-I was told same thing would happen to me if I had a recurrence in same area as cancer loves it's microenvironment and the choice was easy, I did my rad's. 

hmm, that might be why I did not qualify, I think my DCIS was too spread out and also my age might have done it.  I was 59 at the time so maybe borderline?

oh well, done now

The concern about DCIS is that because the cancer cells are confined to the milk ducts, when the cells multiply (as all cancer cells do), the only place they can go is further and further out within the ductal system of the breast.  That's why DCIS tends to be more spread out than invasive cancer. It's much more common to find large areas of DCIS (4 to 5cm or greater) than it is to find large areas of IDC.  This is because as invasive cancer cells multiply, they tend to just form into a larger and larger lump, still contained within that single area of the breast.  

This is also why, contrary to what you might expect, mastectomies are considered to be 'medically necessary' more often in cases of DCIS than cases of IDC.  DCIS, because it can be so spread out, can be harder to remove with just a lumpectomy whereas with IDC, the surgeon often just has to remove the cancerous lump and a margin around it. Having said that, I believe that about 80% of cases of DCIS - certainly a large majority - are well enough contained that a lumpectomy is considered to be feasible and adequate.