Regarding radiation...is it really necessary?

glojean

Hello,
I recently had lumpectomy on my left breast to remove stage 0 cancer in duct (in situ). The doctor said the surgery was a success and the margin was at 6 and clear. No lymph nodes were involved. Anyway, she still recommended radiation and perhaps medication as an after treatment. By the way, the pathology report came back indicating that it was a high grade cancer and was estrogen-sensitive.

My concern: I got 3 other opinions before surgery and the three other opinions did not feel that they would recommend radiation or meds for this type of cancer. I told this to my surgeon and she thought about it for a few seconds and said she would still recommend it. I am so confused about this...of course I would prefer not to have radiation because of fear of harming other organs, but if it is necessary, of course I will do it. Yet, I feel I owe it to myself to look deeper into this matter by going back with the surgical pathology report at least to one or two of the second opinions.

Can someone help me think this through and suggest what questions I should be asking or have you had any experience like this? Any info would be appreciated since I am a nervous wreck over this. Thanks.

LorettaB

Hello, Glojean,

I had to go through this recently myself. I had a lumpectomy and sentinel node biopsy that came back with microscopic cells. I had no other lymph node involvement and my surgeon got good, clean margins.

I was under the impression that all I had to go through would be chemotherapy. However, both my surgeon and oncologist said I had to have radiation and they had to convince me because I wasn't going to do it. My oncologist actually said it could be a fatal error if I didn't.

Basically, I would take any step to not have to go through this again. Cancer is such an insidious disease and the more I talk to doctors, the more I realize how much they don't know about it...will it return or not? They just don't know. And you will probably run into the fact that in terms of re-occurence, everything is a percentage.

Of all these opinions, were any of them from Radiation Oncologists? That would be a valuable opinion. Also, check your pathology report...it should mention if you are HER2 positive. If so, maybe you are a candidate for Herceptin, which has made a lot of us very excited.

In terms of harming other organs, when my oncologist explained what radiation therapy was like, it seemed to me as a very precise procedure. I don't have the concern about harming other organs.

The great news is...NO chemotherapy! Congratulations on dodging that bullet!

I hope this helps and I am sure others will respond. This board has been the most support for me during this time in my life.

Loretta

epgnyc

While I had to have radiation (I had invasive ductal cancer, 1.8 cms.), my closest friend had DCIS about 5-6 years ago and she went to one of the nation's top cancer hospital to consult on whether she should undergo radiation. She saw the physician there who was doing major research into the topic at that time (DCIS and radiation) and my friend was advised that it wasn't necessary. But in the intervening years, the protocols on radiation and DCIS have changed and I believe it is now routine to advise patients to have radiation in addition to the surgery. Hope this helps. These decisions are always tough and sometimes very individual. Good luck.

glojean

LorettaB said:

Hello, Glojean,

I had to go through this recently myself. I had a lumpectomy and sentinel node biopsy that came back with microscopic cells. I had no other lymph node involvement and my surgeon got good, clean margins.

I was under the impression that all I had to go through would be chemotherapy. However, both my surgeon and oncologist said I had to have radiation and they had to convince me because I wasn't going to do it. My oncologist actually said it could be a fatal error if I didn't.

Basically, I would take any step to not have to go through this again. Cancer is such an insidious disease and the more I talk to doctors, the more I realize how much they don't know about it...will it return or not? They just don't know. And you will probably run into the fact that in terms of re-occurence, everything is a percentage.

Of all these opinions, were any of them from Radiation Oncologists? That would be a valuable opinion. Also, check your pathology report...it should mention if you are HER2 positive. If so, maybe you are a candidate for Herceptin, which has made a lot of us very excited.

In terms of harming other organs, when my oncologist explained what radiation therapy was like, it seemed to me as a very precise procedure. I don't have the concern about harming other organs.

The great news is...NO chemotherapy! Congratulations on dodging that bullet!

I hope this helps and I am sure others will respond. This board has been the most support for me during this time in my life.

Loretta

Dear Loretta,

Thanks for the response. I have not seen the oncologist yet, so will have the benefit of that opinion too.

Incidentally, one of the doctors (well-known and respected) who felt I did not have to have radiology looked at my post-surgery report and still stands on my not having radiation. He said the standard procedure around the country is to do lumpectomy and radiation, but says there is new thinking with this. He says the recurrence rate for the return of cancer to the person is about the same whether you have radiation or not,and women who have not had radiation have the option of another lumpectomy if they do have recurrence in the same breast,he said. Once a patient has had radiation, however, she must have a mastectomy if her tumor recurs.

glojean

epgnyc said:

While I had to have radiation (I had invasive ductal cancer, 1.8 cms.), my closest friend had DCIS about 5-6 years ago and she went to one of the nation's top cancer hospital to consult on whether she should undergo radiation. She saw the physician there who was doing major research into the topic at that time (DCIS and radiation) and my friend was advised that it wasn't necessary. But in the intervening years, the protocols on radiation and DCIS have changed and I believe it is now routine to advise patients to have radiation in addition to the surgery. Hope this helps. These decisions are always tough and sometimes very individual. Good luck.

Hi EPGnyc,

I am in NYC too! May I ask how your friend that did not have radiation is doing? Yes, I went to one of the top cancer doctors in NYC for second opinion--and the surgeon I had is also considered tops in NYC. Yes, it is confusing--needless to say I appreciate your response.

Glojean

CindyPR

Hi, Glojean,

Had two lumpectomy's on left and right. Same stage 0, thank goodness for the doctor's. I say go for the ratio. I did have four chemos., and then rato. 35 treatments on each side, but thank goodness going on three years cancer free. I am taking tamoxifen, for the next 5 years. I say take the treatment, as your life is so short, as with mine, Hubby in miliary, and moved from California, to Puerto Rico, and found here. I recommend go for everything that is offered. I was scared of the suggestions of the doctor's but they know the best. Go for it. If you need to write, send me a message. As have been through it, as you are doing now. Thoughts and prayers are with you.

cindypr

LorettaB

glojean said:

Dear Loretta,

Thanks for the response. I have not seen the oncologist yet, so will have the benefit of that opinion too.

Incidentally, one of the doctors (well-known and respected) who felt I did not have to have radiology looked at my post-surgery report and still stands on my not having radiation. He said the standard procedure around the country is to do lumpectomy and radiation, but says there is new thinking with this. He says the recurrence rate for the return of cancer to the person is about the same whether you have radiation or not,and women who have not had radiation have the option of another lumpectomy if they do have recurrence in the same breast,he said. Once a patient has had radiation, however, she must have a mastectomy if her tumor recurs.

Dear Glojean,

Thanks for the extra info! I did not know some of these things! Extremely helpful!

In additon to the things you're hearing, I'd also follow your gut.

Good luck in your decision!

Loretta

martyzl

Hello Glojean!

As a previous person said, it's personal... After doing a lot of reading, I decided against it. I understood that it is to prevent local recurrance- which is not so scary (as metastases, for example) and there are new studies finding radiation in these cases may not be such a grand idea after all... I guess in the end, you go with your gut, your intuition. Trust yourself, you will do what is best for you.
I had 2 tumours in the breast- 2.5 & 1.5cm, as well as 3 positive nodes, one of which was a 1cm tumour. I had mastectomy, reconstruction & 6 hits of chemo.
My 3rd yr "anniversary" since diagnosis is coming up on Memorial day weekend. Still clean, cancer free, so far as I can see. *smiles*

By the way, congratulations on that "0" staging and getting several opinions. Good job! You are doing a fabulous job, Glojean!
Please keep us updated! We are here for you!

Be well,
Marty

inkblot

Hi Glo:

I'm 4 years out and had both chemo and rads in '01. I researched and considered every possible scenario and at one point, prior to beginning rads, I considered foregoing it.

Not unlike yourself, I was concerned about radiation damage to other organs, long term side effects, etc.. I eventually decided that the risks were worth it to me though. I was hormone neg. and Her/2neu pos.. Not everyone feels the same, regardless of dx.. We each have our limits and places we're just not willing to go and as long as we're solid in our decision making, it's all ok, because regardless of what anyone recommends or what any studies support, it's our body and ultimately our decision.

I don't subscribe to the theory that the doctors always know what's best for every patient. They can only make recommendations and doctor's being human, they invariably subscribe to differing thoughts and feelings, even when considering the same info and options. And I know, it only makes it more difficult to arrive at a decision when the opinions you're getting are conflicting. Still, only you can decide what's best for you. And as everyone else has noted, it's never easy to make these decisions.

Just a couple of points to consider:

The current delivery methods of radiation, in most treatment centers today, is far superior to what it was just 2 years ago! This translates into less, and in some cases, NONE of the radiation field touching either the heart or lung. I'd recommend consulting with a radiation oncologist and getting the skinny on what "mapping" methods they utilize in order to spare the internal organs and hopefully that info will be very helpful to you in making your decision.

Those bones effected by breast irradiation, typically have no long term problems, but again, everyone is different in response and there are no guarantees going in as to what will or won't occur, re side effects.

Since your dx was DCIS, you are likely in good company if you choose no rads, as many women with dx's similar to your own decide to forego it. Particularly post menopausal women. (Based upon the cases with which I have familiarity)

The bottom line is that you must educate yourself and then go with your personal feeling about radiation. Once you've made your final decision, determine that you will not look back and no 2nd guessing yourself. Be at peace with your choice. I think having peace about our decisions being right for us, no matter what, is extremely valuable. In truth, women choosing rads have recurrences and women foregoing rads have them as well. Clearly, having radiation is no guarantee. That's the bugger of the whole thing...no rhyme or reason and no guarantees either way. Since chemo and rads can cause cancer as well as kill it, no one can tell us how we should choose for ourselves or what risks we should or shouldn't take. The best thing we have going is getting educated and making our most-informed decisions, accepting responsibility for those decisions and moving on.

I know it's a difficult time for you but you will, as Marty said, make the decision which is right for you. And trust me, this trying time will pass. The sun WILL shine again and the birds will sing and you'll notice!

Maybe just take a breather for a day or two before making a decision. Do something totally absorbing and fun. Allow your spirit and emotions a bit of respite from the stress. Best wishes and keep us posted.

Love, light and laughter,
Ink