Cancelled Rads, now what?
Note my low grade DCIS. My lumpectomy showed pure DCIS, nothing else in there. I am age 76.
I opted out of rads because of my fear of lung zaps, possible but no longer common heart zaps, and lifelong vunerablity to skin cancer. Skin cancer is a real possibility for me given my age and several dodads removed over the years, plus I am Irish.
My intention was to go for a mastectomy but now I question even that. I do intend to go on Tomoxifen and I already am in posession of that. Wouldn't you know, my MO is out on maternity leave until September.
1) Is this reasonable?
2) The numbers show that I would have a 3%, possibility of recurrance, with or without therapy. Some calculaters go as high as 7%.
Your input, experience, expertise, would be greatly appreciated.
Comments
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If it were me, and I had your physical concerns, I would have the mastectomy. One usually doesn't needs rads after that anyway. Best wishes!
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Infobabe, can you make an appointment with another MO? Getting more opinions may help you to feel at peace with your decision. I don't know your age, but that may factor in, too. I made a comment to my BS that I wish I had chosen not to do the radiation and his response was that might be okay if I'd been over 70 years old (I was 48 at the time). I have read that in some cases, tamoxifen only - without rads - after surgery is acceptable. Wishing you the best!
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If I were you, I'd opt for a MX with immediate reconstruction using tissue. A DIEP or whatever you are eligible for. You will have a very natural looking breast and there will be no need for radiation.
I think rads would be overkill in your case. If you were my mother, I'd be very hesistant to recommend it.
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Infobabe, I seem to recall from another thread that you're 76 (I remember this b/c it's the same age my mom was when she was diagnosed). I wouldn't recommend that you have a mastectomy now. Everything about your pathology screams low, low risk of recurrence. And doesn't the tamoxifen cut those recurrence rates in half? As someone who had a UMX at 47 and is still tight and sore 7 weeks later (and still looking at DIEP reconstruction next year), I wouldn't suggest having a mastectomy at your age with such a low risk of it coming back. Just my two cents of course....take care.
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I wouldn't do it, but go with your gut feeling. That's what I did with my decision to have a lumpectomy and do without rads.
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Thanks Lane, yes, i am 76 I will amend my page.
My MOs PA is calling me Monday but I want to see another doctor. I don't think she is competent to give me advice on behalf of her boss.
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I thought I was the oldest - I'm 76 also.
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Thanks, sweetbean. I wouldn't do reconstruction. As I amended my page, I am 76 and I am not up to that. No one looks at my chest anymore, anyway.
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That is how I am feeling. It is hard to seperate our emotions from sound judgement.
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Infobabe, you are a very young 76 ... that said, if I were you I would stick with lumpectomy and close observation (as we have discussed before, I was willing to do that myself when my risk was 20%!). If you are willing to go through tests (MRI/mammogram/possible biopsies) regularly, they will catch anything that may recur early. I think even 10% risk is pretty low, but we all have to make decisions about what level of risk we are willing to live with (and for some women 1% risk is too high, and I understand that too).
Good luck!!
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Yes and isn't that a bummer. I am always on pages with younger women who have other issues. We all want to survive pain free, but they have so many other considerations. My heart goes out to them how this most terrible of diseases complicates their lives. So many of their stories bring tears to my eyes.
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I really appreciate that. That is what I would want to do. If I had any further events, at this point, I think I would just go ahead with the mastectomy. I notice in my statement from BC/BS they are calling the lumpectomy a partial mastectomy.
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Yes, it is very sad how so many younger women are getting cancer. I had my first cancer at 46 and that was considered young at that time.
But in those days, after surgery, there was no follow-up and yet I was cancer fee for 28 years!!
And when I got cancer again in 2010 it was a new primary, not a recurrence. So I am very grateful I went so long with NED.
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Refresh my memory. Did you go for close observation? Your notes say rads. We were diognosed on the same day but did you start rads May 21? Your treatment went much faster than mine. Doesn't give you a whole lot of time to think.
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In the past the only treatment was a radical mastectomy. I hope you didn't have to go through that though it did save many lives. When I was young I knew a very old woman who had the radical but was alive so many years later.
My grandmother had BC in the late 30s. Because she was terrified by the prospect of a radical, she opted for no treatment except for some homeopathic snake oil. Of course, she died a short while later in her late 40s. But, my mother never had any kind of cancer at all. Seems I am doing something similar to my grandmother.
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Hi Infobabe, I ended up choosing radiation after my second opinion on the path came back. I had 2 good things going for me (good margins, small tumor size) and 4 bad (I am 49, grade 2, tumor close to chest wall, and ER-/PR-) and my risk was higher than the 20% I was willing to live with. However, if I had been told 7% there is no way I would have done radiation. That said, so far - radiation hasn't been that bad (though it is not fun). I would not have had bmx or umx either, mainly because I am major surgery adverse ;-) -- though I would have it if it were to save my life for sure. My aunt had a radical mx ... it was truly horrible and the memory has stuck with me for life.
I started radiation about a month after my lumpectomy - I needed to get it done so I would have time to recover before school starts in August (I am teaching two classes next semester!).
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I had what was called a modified radical mastectomy. They don't take the muscle as was done in the radical one (which my mother in law had in the 50s) I had 17 nodes removed and still have very little feeling in my right arm from the shoulder to the elbow and also from the armpit to the waist. But you get used to that They didn't know about the sentinel node in those days. I also had reconstruction done, but the implant has gravitated up and out and has a small tear in it. The surgeon who did my new cancer (in the other breast isn't concerned as the tear is deep inside the implant so no silicone is leaking) I guess I should see a plastic surgeon to make sure though.
My mother in law had a huge indentation in her chest, but did fine for 25 years when the cancer spread to her bones. Amazingly she lived for another 5 years. She was such a strong lady and I miss her very much.
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I had what was called a modified radical mastectomy. They don't take the muscle as was done in the radical mastectomy (which my mother in law had in the 50s) I had 17 nodes removed and still have very little feeling in my right arm from the shoulder to the elbow and also from the armpit to the waist. But you get used to that They didn't know about the sentinel node in those days.
I also had reconstruction done, but the implant has gravitated up and out and has a small tear in it. The surgeon who did the lumpectomy on my new cancer in the other breast, isn't concerned asthe tear is deep inside the implant so no silicone is leaking. I guess I should see a plastic surgeon to make sure though.
My mother in law had a huge indentation in her chest, but did fine for 25 years when the cancer spread to her bones. Amazingly she lived for another 5 years. She was such a strong lady and I miss her very much.
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I don't know whether this post will be welcome or not (but you did ask...) - I chose against radiation. Partly because of location - I was living in Australia at the time and the radiology place was h**l and gone from where I lived. I'd just gone through 6 months of chemotherapy and really didn't want ANY more treatment. I chose a radically different path and I felt SO incredibly good doing it, I just wanted to share that with you.
Instead of doing radiation, I chose meditation. I have a wonderful white light meditation that I'd be glad to share with you. Every morning after my shower I'd drench my chest in certain essential oils (I'll share which ones if you're interested) and go back to bed and do this white light meditation. I did this for 6 weeks. I felt so incredible at the end of the 6 weeks, I know for myself that it did me a world of good. I can't tell anyone else to do this, obviously, I just wanted to share what helped me.
Wishing you all love and light and heaps of healing.
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infobabe, (I love your screen name), I was looking at this page from the American Cancer Society and (it doesn't address stage 0) for stage 1 it says after 70 and hormone receptor positive then you may consider breast-conserving surgery without radiation. I would think this applies even more so to stage 0. Hope this helps:
http://www.cancer.org/Cancer/BreastCancer/DetailedGuide/breast-cancer-treating-by-stage
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Infobabe I would do the same in your shoes. Yes I think it's reasonable. Good luck with whatever you decide.
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I think meditation in always helpful regardless of why you are doing it. If you wish to share, plaese feel free. Can't say is doesn't work as it has worked for you.
You life in Australia fascinates me. Most Americans would love to visit Australia. It is so far away few of us will have the opportunity. Were you in the Outback, like Alice Springs?
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Thanks for that article. I have cut and pasted it for ammunition when I talk to my next doctor. It shows I am not totally off base.
I always thought that InfoBabe pen name was so funny. I think I got it from Wayne's World. It is complementary and sexist all at the same time.
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Thanks for that. All you women have reinforced what I believe to be true. The encouragement is giving some peace of mind.
Makes me wonder why the docs were so insistant that I get rads. More alternatives should have been emphasized though I know rads would always be an option, but not the only option.
I think they don't understand that some of us are more attached to a good painless life than we are to a breast. I told my RO that to be objective, I am lucky because the breast is not a vital organ.
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Infobabe,
When I was diagnosed with DCIS in 2007, the first surgeon I saw recommended a mastectomy. I asked for a 2nd opinion and the 2nd surgeon thought she could get all the DCIS with only a lumpectomy.
Although that went well, my post surgical margins were positive, so I again got a 2nd opinion. I consulted with Dr. Lagios, a world renowned DCIS expert and pathologist, who has a consulting service that anyone can use. He disagreed with the local pathologists and said that I did get good margins and didn't need any further surgery.
He also used the Van Nuys Prognostic Index to calculate my risk of recurrence without radiation as only 4 percent. Because of this, I opted out of radiation since the typical 50 percent risk reduction with radiaiton would only have been 2 percent in my case.
He also said that the most current studies on tamoxifen showed at best an absolute 2 percent risk reduction for DCIS patients, so I decided against that as well.
It sounds like you might have similar low risks of recurrence. However, only you can know what type of risk you are comfortable with.
If you would like to read more of my story I have a website at: http://dciswithoutrads.com/
Also feel free to PM me if I can help in anyway.
Good luck with your decisions.
Hugs,
Sandie
PS I am live in west Michigan too, just outside of Grand Rapids
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Thank you for that. I think I will follow up. Your DX was 5 years ago and no problems?
This is what I am really thinking. But I need reinforcement. I am afraid if I do nothing I will always worry waiting for each mammogram. But if I had this backup I would feel more confident. Thanks for that link. It looks not so hard now.
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Hi Infobabe,
Sheeeew, choosing a mastectomy for pure DCIS instead of Rads seems a bit harsh to me. But that's only my 2c worth.
Keep in mind that in some cases, Rads are still recommended even if a mastectomy is done. It depends on the location of the tumor. In my case, the tumor was very close to the chest wall, and I underwent 25 rad sessions after a mastectomy and chemo.
God bless,
Janine
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I love hearing from women from around the world as this "thing" as treated somewhat differently and I wonder if anyone does it better.
Yes, it is harsh. All alternatives suck. I think I could manage the actual treatment as so many do. What I fear is the lung burn and the increased chance of skin cancer.
A close friend whose sister is a rad nurse called me last Sat. and she commented that the skin cancer risk is not that high. But at age 76 I have a lifelong accumulation of rads that I got for one reason or another, including fluroscoping my feet as a kid to see if the shoe fits properly.
My skin has all kinds of freckles and moles that I didn't have when I was 25. Plus of Irish extraction so I am already at risk. On one post I read that a woman has to have the twice a year survey of her entire dermis looking for melanoma becasue if her rad treatment.
I figure that at the beginning I had 5 choices. 1. Mammosite radiation. 2. Three to five weeks of rads. 3. Simple mastectomy. 4. Taking only Tomoxifen after lumpectomy with clear margins. 5. Doing nothing further after clear margins.
I tried the Mammosite, had the balloon in and everything but it was too close to the surface of the skin (high and almost on my chest) and I had to take it out. If that had worked, I wouldn't even be on this board. I would be enjoying the summer forgetting the whole worrisome mess.
I have discounted the 5 weeks of rads. It is not too late as I am all tatted up and my first appointment was for this afternoon.
I am still considering 3 ,4 and 5. There is a path professor at Stanford University in California who does a second opinion on the tissue collected and makes a recommendation for further treatment. My MO is out on maternity leave so I am going to talk to her PA about this and the other options. I don''t think I am in a whole lot of danger. The non malignant DCIS is long gone. The advantage of mastectomy is that I can quit worrying at least no more than when I had no problems.
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Infobabe, I think you have spelled it out so clearly. I think that skipping radiation is actually a very wise choice for you, for all the reasons you have specified. I also can completely understand the added "benefit" of having the mastectomy so you can live your life without worrying. It is a hard decision - but at the end of the day YOU have to choose which of 3,4, or 5 will allow YOU to live a happy and (knowing you) energetic life.
As we have discussed before, you are a very very young 76 and tenacious enough that you have many many healthy years a head of you. You deserve to be able to live them without worrying about this ... if you can live with 4, or 5, then you can skip a potentially tough surgery, but will have constant follow-up (and depending on how calm you are - possibly fear). If you decide on 6, you will have another surgery, and its associated recovery, but you won't have to deal with the wonder and worry.
Whichever you decide, be rest assured you have many on this message board that are behind your decision and sending the most positive of thoughts your way.
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Thank you so much for that.
The appeal of the MX is to get rid of this obsessing I have been doing for the last 3 months.
I also appreciate your reinforcement because I know of your academic background too. Wishfull thinking but I want professionals to back me up. They are so into their specialities that they cannot think there might be another way to go. Makes me feel like I am insulting them to even ask. Even my RO who is a wonderful guy, cannot see how extreme his treatment is for my situation.
So, on to the next appointment.
I cannot tell you how appreciative I am for all of your input. Makes me analyze my thinking. I don't want people to agree with me if I am wrong. It is all so very difficult.
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