I am new to this forum and newly diagnosed DCIS high grade. I am at the decision making process of type of treatment. I have been given the option of lumpectomy with radiation and mastectomy. Both I need hormone therapy. I am pre menopausal. How did those in this same situation decide? How did you handle to anxiety of not knowing or wondering about it coming back?
Any input is greatly appreciated!!!
Are you seeing a specialist in breast cancer? Repeated studies have shown that there is no more benefit in a mastectomy than a lumpectomy. It is my understanding that the standard protocol for DCIS is lumpectomy followed by radiation and 5 years of a drug like Tamoxifin. I had cancer in each breast and both were treated with lumpectomy. Neither has returned, and they occurred in 2004 and 2009; each was a different type of cancer, so it was not metastatic. While it is natural to want the cancer out and to make sure it does not return, a mastectomy is a much more serious and invasive surgery. I gave the surgeon permission to do a mastectomy if she felt it was necessary, but she was pretty adamant that a lumpectomy was the best choice short and long term. If you have any questions, please consider getting a second opinion.
Thank you. Yes I am seeing a breast specialist. She really said if the BRCA gene was normal/negative it was my choice.
Now that I have the genetic result, I am going in again this morning to discuss and make decision. I just am nervous about the return and making a good decision. I have a lot of anxiety at this point and the not sleeping is probably not good for thinking.
I plan on asking many more questions today and trying to do the best surgery for my situation.
thanks! And congrats on your recovery and success with your surgeries.
Each person's condition is individual, as are their choices. I am post-menopausal, so hormones were not an issue with me. By the time high-grade DCIS was diagnosed, it was scattered throughout my breast and it was more practical to have a simple mastectomy.
Although my margins came out clean, the doctors are still keeping a close check on my remaining breast. Annual palpation and mammograms, and I requested the new "3-D" (tomosynthesis) mammography. The last one turned up a benign cyst, which didn't need treatment. Medicare didn't cover the tomo, but my insurance company's "Part B" did.
I was diagnosed with DCIS in 2016 and faced similar difficult anxiety provoking treatment decisions. First of all, many breast cancer experts no longer consider DCIS actual breast cancer. Studies have clearly shown that the 20 year survival rate is essentially the same in DCIS for lumpectomy vs mastectomy. Mastectomy for DCIS is generally only recommended when it is in multiple areas of the same breast or if the lesion is so large that good surgical cosmetic results are not possible. Newer studies are in progress specific to DCIS that are looking at watchful waiting for low grade DCIS.
Given this, the dilemma still exists of what to do because you want the “cancer “ out, don’t want it to come back, and want to have as good cosmetic outcome as possible.
I suggest that you call the SHARE breast cancer help line and ask to speak with a DCIS peer who can support you through your decision making and treatment processes. If you live in the NYC area, SHARE has a DCIS support group the first Monday of every month at 6pm.
For the anxiety, I found an 18 minute video on
YouTube called deep blissful relaxation that was magic for me. There are many to choose from so I’m sure you can find one that will help
you relax. I also realized that talking to other women facing DCIS or breast was most important because they were the only ones who got what I was going through. Keep your life and routines as normal as possible. I also went into therapy when my anxiety and depression was getting out of hand.
If it wasn’t for SHARE, I don’t know how I would have gotten through the dilemma of DCIS and the associated anxiety.
Please keep us posted and reach out to us for support and with any questions you have.
There is life after DCIS and it is wonderful!
RH in NYC
I do not know much about the specific radiation offered to women because I have it in too many spots that cover half my breast and so will have a mastectomy soon, but what I want you to know is that unless you have a low dose of radiation, you cannot radiate the breast twice. So if it does come back, your only option is mastectomy. The radiation therapy that would allow you to radiate again is called 2x2. Ask about this low dose so you don't use up your "silver bullet" on a stage 0 cancer. All the best, from one DCIS sister to another.
Thank you all for your replies. It helps to have people that truly understand.
I have opted to go with the lumpectomy with oncoplastic surgery(for reconstruction). I will have the radiation, my doctor said that because of my high grade DCIS that if it does come back I would need a mastectomy in that breast.
Prayer and music is helping some with the anxiety. I also have gotten to be a way better runner going through this decision making process, exercise is helpful for me.
I think getting all my ducks in a row with work and life prior to surgery next week gets me anxious as well. i am using my FMLA at my work and staying out during radiation as well, just doing some work at home for my mental health.
Thanks for input on the You tube relaxation!
Good luck with your mastectomy. I know hard but getting the cancer out is what matters.
-robyn
All the best to you! Sounds like you have peace with your decisions, and that is what matters most. Be happy, and be well!
Standard treatment is lumpectomy with radiation and endocrine (hormone) therapy like Tamoxifen. However, if you do have a gene mutation such as BRCA 1 or 2, they typically recommend mastectomy. If it is your choice, you have to do what feels right for you. Having a mastectomy may be considered over treatment for DCIS, especially if there is no genetic mutation, but it is a personal choice.
I too had a similar diagnosis in 2004. Wish I'd had the courage to research this subject before rushing into treatment (lumpectomy/radiotherapy)...and been told that a "watch and wait" approach combined with rigorous dietary adjustments could well have prevented the psychological stress which I still suffer from today - knowing that I didn't have a 'true' cancer. Check out the Cochrane Institute studies which highlight the 'hidden' dangers of mammography screening etc.
I did have the lumpectomy and as a result they found some invasive cancer they did not know I had as it is a microinvasion. So for me despite the stress and anxiety I am continuing to have as this is a wild ride, I definitely needed the lumpectomy and it was true cancer, as well as I did have high grade and my small invasive tumor is also high grade. So although you may not feel it was good decision it was certainly the way to find if there was any more.
I am will be having sentinal node biopsy on Wednesday to check to see if it has gone any further. I have gotten more opinions and my case is being discussed with a board of doctors next week to look at the rest of my treatment plan. Most likely I will have radiation unless of course they find more in my lymph nodes.
Good luck!
Hi rlws,
Wishing you the best of luck with the node biopsy tomorrow! This crazy ride has a lot of ups and downs so it is important to try not to get too far ahead mentally (easier said then done, I know!). I went through something similar. I had the lumpectomy in Nov. 2018 only to learn that my cancer had spread to my sentinel lymph node and I also had vascular microinvasion. I am ER/PR positive. I AGONIZED over my treatment decisions but due to my slightly high Oncotype score of 24 and the invasive cancer, I ultimately decided that I really needed to go through 4 cycles of TC chemo, 35 rounds of radiation, and now I am on Tamoxifen. If the Oncotype genetic testing wasn't offered to you, you may want to ask about it to help guide your decisions. The chemo is unpleasant but not nearly as awful as I thought it would be. It's "do-able" for lack of a better word. Keeping up with your exercise will help you tremendously. I think its great that you can use your FMLA. I also went out on medical leave from work. I'm a manager and my job can be stressful so it seemed easier for both me and my staff to just plan ahead for me to be out, rather than not knowing if I would be in from day-to-day. Some people like to work to keep their mind off of their cancer, but for me I wanted to dive into self-care and not have to deal with the stress of work. It was also cold and flu season during my treatment and I wanted to limit my exposure to illness when my immune system would be so low by eliminating my long commute on the train/subway to work. For me, it was the right decision not to work. I did acupuncture and crystal sound healing all the way through treatment, walked my dog everyday, and did restorative yoga. It really helped me and also allowed me to be able to proactively "do something" when I was feeling so out of control. I also listened to the "weightless" music track almost every night to help me fall asleep. See this article that shows that it works: inc.com/melanie-curtin/neur...
If you do need radiation, I recommend "My Girls" lotion. I used it and also recommended it to a friend who also went through radiation. Both of our doctors asked what lotion we were using because they each said our skin looked better than most of their patients.
I'm now one year and two months out from completing radiation and doing great! Keep up the positive attitude. Sending strength and healing your way! You've got this!
Thank you so much. This helps so much to know not alone.
I do tend to get 'ahead' of myself, hard not to!
I look forward to healing from the reconstruction so I can do some exercising, still waiting for the clear to at least walk exercise, but said could be 6 weeks before I can run or something more strenuous.
I have not had oncotype number but did have a test for brca gene. I will ask about that.
My noninvasive dcis is ER/PR positive but my invasive is not. My invasive is HER2 positive. There are so many things it is hard to keep track of what I have and what to do. I have question lists for all doctors that I go see. Next is the medical oncologist as we are getting another opinion about whether radiation is correct. My doc seems to think so and thinks we will have negative sentinal node biopsy, but she also did not think I would have any invasive cancer, seems my case is rare but since grade 3 ...
Thanks for the input about both the lotion and the chemo and keeping active. I look forward to adding that, I have been secluding myself from everything which is unhealthy but what I needed this month. I will get through I know.
I am doing some work, teaching online courses so I have a connection which is good for me, not much work but enough to help keep my mind off of life. I am fortunate I can do this with my job as a Professor.
Glad to hear you are doing well and hope I can follow in your footsteps.
Appreciate all the encouragement.
Recently diagnosed with DCIS 
New challenge on life's journey. 
New and amazed
New to the Group
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