The DCIS I was diagnosed with in May is about as small and low grade as you can get. In fact, from the stereotactic to the surgical biopsy, nothing was found the second time. They never could tell if it was estrogen receptive, but the pathologist feels he can go back and test the first sample.
My surgeon feels that I do not need radiation, but the breast specialist he conferred with thinks I do because I am 51. My question is why would we radiate healthy breast tissue? The area is on the left side so I am concerned about damage to the heart, which I have read about. It all sounds like overkill to me.
I will not take Tamoxifen; I am very against drugs and side effects.
Please advise; thanks!
How are you? The goals of treatment in DCIS are to: eliminate the DCIS, limit the risk of local recurrence, and eliminate the chance of developing an invasive breast cancer. Post-operative radiation therapy is advised to minimize the chances of having a recurrence of DCIS in the breast.
Lumpectomy alone is adequate treatment if only one area of abnormality is found on exam or on a mammogram and it is very small. Also, the surgeon is able to remove the DCIS completely and no DCIS is left behind in the breast. It is important that mammogram of the breast shows no more suspicious findings after the lumpectomy and that the type of DCIS is a less aggressive type. Close follow-up and surveillance is needed to prevent recurrence. It is important to discuss your treatment options with your doctors to erase all doubts. This link may be of help: http://www.dcis.info/dcis.html
There is a decrease in local recurrence of DCIS in women who receive radiation following surgery. Radiation is usually included following breast-conserving surgery if the DCIS has a high-grade histology, close margins, or is more than about 5/8 of an inch in size. The purpose of radiation is to destroy any potential remaining DCIS that might still be in the breast. It is given five days a week for a period of five to seven weeks.
Side-effects of Radiation treatment may include: a sunburn-type appearance of the skin in the area treated, mild swelling of the affected area, fatigue and loss of appetite. These common side effects generally occur toward the middle of treatment and continue for a short time after completion of the course of radiation treatment. Change in skin color, texture and sensation may persist for months after treatment completion.(http://www.dcis.info/dcis.html)
Thanks very much for your comment. Was this your own personal experience? I was wanting to get a converstation started with women who chose the option of no treatment. I wish all the doctors would be on the same page; some call it cancer and some do not.
In January 2001, when I was 46, I had a similar experience. The stereotactic biopsy removed all the DCIS. The wide area excision found nothing left. I decided against radiation as I was advised it would make any future problems harder to see on mammograms and because it could only be used once. The radiation oncologist suggested it would be overkill for such a small amount of DCIS.
I had planned to go with Tamoxifen, but had to stop after 3 months because of unexpected side effects. The doctors assumed that hot flashes were the major side of effect when estrogen receptors are blaocked by it. For some women, however, perimenopause is much more than hot flashes. I also suffered gastritis, anxiety and panic attacks. All could have been alleviated, or at least managed, if the doctors had recognized them as perimenopausal symptoms. When I went through a more natural menopause later, I had the same symptoms, though not as extreme.
Fast forward to the present. After yearly mammograms and two false alarm biopies, I was diagnosed with invasive breast cancer in the same breast, although a different area. I am recovering from a mastectomy I had 2 weeks ago. I had 5 of 15 positive lymph nodes, so I am at Stage IIIA, even though the cancerous area was only 1.5 cm. I have radiation and a year of chemo (her2+) to look forward to. I will also have a lifetime of what ifs....
It was probably a good thing I didn't get radiation in 2001. It was probably a bad thing that I couldn't stay on Tamoxifen.
At the end of the day, you need to gather all the information you can and make a decision that you will be prepared to live with. It's your body, your life, your decision. You asked if anyone else had your experience. This was mine, for what it's worth.
Thanks so much for your reply. Are you thinking I should consider Tamoxifen? I'm just very afraid of drugs and their side effects. I've already gained weight with menopause, and have read that is one of them. Anyway, let me know what you think.
If you're already in menopause, you will likely be put on an aromatase inhibitor, not Tamoxifen. I hear these have they're own set of side effects but I have no personal experience with them. I see my oncologist tomorrow to work out my chemo treatment plan.
I am in the same boat, and I wonder if I should get radiation and the aromatase inhibitor ( I had a hysterectomy 2 years ago.)
I am 49, no history of any cancer and 4 weeks ago a biopsy showed I had a DCIS 1.3 cm (.51 inches) in size. The DCIS was in the left breast = the heart side.
The wide excision surgery removed it with good margins, however the DCIS was grade 3 (aggressive growth). Aggressive or not, the DCIS is gone.
So I'm playing the numbers game, which I clearly don't understand fully because I'm not a statistician or physician.
I have a "Murphy's Law" history of side effects from drug therapy and I'm scared to death at radiating my lungs and heart.
Dr Susan Love (breast cancer expert and women's health advocate) says:
here is currently a controversy about whether radiation is necessary following breast conservation surgery. To date, three randomized controlled studies have compared surgery alone to surgery and radiation for DCIS. Most of the women in these studies had small lesions that were removed with clean margins. At five years of follow-up, surgery alone had about a 16 percent risk of recurrence while surgery with radiation therapy had an an 8 percent risk. About 50 percent of the local recurrences were invasive cancer and 50 percent were more DCIS. Some surgeons believe that this low recurrence rate means that if the DCIS was removed with a nice, clean margin, radiation isn’t necessary. Others believe that radiation is necessary because the DCIS can recur, and it can recur as an invasive cancer. The National Comprehensive Cancer Network treatment guidelines recommend that radiation only be skipped if the margins are negative and the tumor is low grade and small (less than 1/5 inch).
Thanks; you probably feel like me; just a small shadow of a doubt still left in your mind. I think I'd rather save the radiation in case I'd need it in the future. I am seeing a radiation specialist on Wednesday just to hear what they have to say. My email is ***@**** if you want to chat that way.
I have had a turn-around after speaking with my internist, an OD (not an MD) for the first time since I was diagnosed. I've been seeing this doc for over 10 years for mostly minor things, but he's someone that I trust. I know from past history, he always informs me about side effects of potential treatments and lets me be the one to decide. And he's always honest about what he would do in my situation.
He reassured me that the side effects from both radiation and drug therapy are minimal in the majority of the population. He told me that I was young (I said, "I'm 49!" and he said, "that's young!") and that I was relatively healthy and that I'm likely to handle the short term side effects very well. He agrees that the numbers show that the risks of long term detriments due to treatment are far outweighed by the risk of dying of cancer without the treatment. He assured me that the radiation treatment is very specific and limited as much as possible. It's not the same treatment as it was even just a few years ago.
I also have to bottom line it in this way: I want to be here for my now 7 year old son in years to come. I don't care if I only have one leg, one lung, one arm and one eye due to treatment from years before. Every kid needs his mother. If I were single and childless, and it were just me depending on this body, then I might choose differently.
But cancer is a bigger enemy to me, a bigger enemy than the treatments might ever be. I will do the treatment, and make sure I remain very vocal and focused about any side effects I feel, and I will make sure I stay informed about all the latest news about treatment options.
I have to do everything I can within my power, to be here for my son in years to come.
All we can do is make the decision based on our personal values and then *make it* the right decision, by working that treatment to the best ability we have, whatever that decision is.
I'm in a similar situation as you. I'm 46 and had a mammogram in May that showed 1.5 cm area of pleomorphic calcifications (no mass was seen or felt). I had stereotactic biopsy with results showing grade 3 DCIS with comedo necrosis and no invasion. An MRI showed activity in the area of the biopsy but nothing else.
On June 18, I had partial mastectomy (surgeon removed a little more than with lumpectomy but breast still looks the same) along with removal of sentinel nodes due to grade 3 pathology. The pathology showed 4mm of intermediate grade DCIS with no invasion and normal lymph nodes. (What a relief.) The pain from the underarm surgery was far worse than the breast surgery.
I was feeling OK until I had my radiation planning appointment on Tuesday. Since then, I am having major anxiety about having radiation. In doing some research, it sounds like overall the risk of recurrence with breast conserving surgery alone vs. BCS with radiation goes from 15% to 7-8%, but I'm wondering if my risk is higher with the grade 3 cell type. I'm also worried about side effects of radiation (especially fatigue that can last after the treatments end.) Also, if there is a recurrence, radiation isn't an option the second time around and it sounds like reconstruction can be difficult after radiation. I'm actually thinking I might want to opt out of the radiation and go with a simple mastectomy with reconstruction since no radiation is needed with that option.
If you (or anyone else) have any words of wisdom, please comment. What a way to spend the summer.........
I had 1.3 DCIS in 1990
Had lumpectomy- negative margins Yea!
axillary dissection -negative Yea!
Radiation 5 weeks
Here's what I did for radiation
I took KELP supplements - which protect cells from radiation
Now I don't know if that was a good thing but - I did not suffer
any burning, itching of the breast- It got hard as a rock
I think I didn't burn or peel because I used "cocoa butter" every day after treatment
I took vitamins - ate well and rested after each treatment
It was fine - I felt fine - guess I was lucky don't know?
Then Tamoxifen for 5 years [slight weight gain - went from 115 to 125] not
toooo bad. I lost it afterward though
After 10 years I was fine
Then was !!! MISdiagnosed !!! for DCIS recurrance
If you have DCIS - it is a PRE cancerous condition and the odds are
excellent of no recurrance
Just make your own decision but I never regretted my choices
because each year I was given a clean mammo Yeah!
The time to be dililgent is AFTER all your treatment
Also - make sure you don't fall into the hands of a knife happy surgeon
everytime a microcalcification is found
That can be common after radiation because the cells get somewhat
mutilated from radiation and can* mirror DCIS * as a recurrance [it happened to me]
Of course- a recurrance CAN happen - but if it is still DCIS - don't panic!
Get 2,3 and 4 opinions if necessary~before a mastectomy!
Thanks for your post, seeing as your situation was so similar to ours. You're so right about taking the bull by the horns to get additional opinions. It's important not to let regret afterwards (and fear before hand) motivate any decision you make.
I had Stage 2, Lobular Carcinoma, and non-estrogen receptive, noninvasive, right breast in 2000. Diagnosed by Lumpectomy with clear margins no lymph nodes involved. This was followed by 3 months of chemo and 6 weeks of radiation. The chemo was bad I lost my hair and I was tired and nauseous all the time. With the radiation, I had extreme sunburn like burn on my skin with blisters and sores, and again was very tired. I had to continue working through this to keep my insurance.
October 12, 2009 I was diagnosed by stereotactic biopsy with estrogen, receptive, noninvasive DCIS, .7cm, left breast. It was removed by lumpectomy with clear margins. The surgeon is prescribing radiation and 5 years of Tamoxifen. I had a complete hysterectomy in 2001 and I am 53 years old. My sister also had estrogen receptive cancer in 1999 she was on Tamoxifen for 5 years with all the side effects. I am strongly leaning toward NO radiation or Tamoxifen. I would rather have mammograms more often then go through the side effects. Without ovaries, isn’t my estrogen level lower already? I have an appointment with my Radiologist and Oncologist coming up soon but I would love to hear what others have to say.
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