I recently posted about my journey with breast cancer as well as my mothers. My mother has received a diagnosis of stage IV breast cancer that has metastasized and she just started her chemotherapy on Tuesday.
My mother was diagnosed with breast cancer 10 years ago. She had a partial mastectomy and radiation and was on the drug Letrozol for five years. Her cancer came back.
Because of my family history and other determining factors I was entered into the early screening program in Ontario. I was placed in a high-risk category and qualified for mammograms and MRIs annually. At 40 years old the MRI showed something suspicious and I was followed to the point where it was biopsied and it was diagnosed as DCIS. I have had two partial mastectomies and now I am faced with the decision to try for a third or have a bilateral mastectomy. My mother is concerned for my future. Rightfully so, she does not want me to have to worry if my breast cancer will come back.
My breasts are not large and after two surgeries a large chunk has been removed and with a third even more would be gone. That doesn’t so much bother me as the idea that cancer could return and I will regret not having a mastectomy it when I had the choice and chance.
I suppose I’m wondering if anyone here has been faced with a similar decision and how on earth you made the decision. I’m 41 years old now.
@EmilyD I am sorry that you have breast cancer and have to make this decision. I know from my experience it can certainly be anxiety provoking. My story is a little bit different than yours. I was diagnosed with triple negative breast cancer in January 2019 following my screening mammogram. I had a lumpectomy, declined chemo, and had 16 radiation treatments. Just as I was about to start radiation I was also diagnosed with ovarian cancer so I had more surgery, which was followed by chemo. It was also determined that I was BRCA1 positive. I am on my last month of a maintenance medication and in early 2022 I will be having a prophylactic bilateral mastectomy to help prevent recurrence. For me, it is important to do what I can to help prevent cancer from returning.
At the end of the day, I believe you will make a decision that is right for you.
@EmilyD Welcome and thank you for sharing your story with us. I am so sorry to hear about your diagnosis and I also would like to wish your mother well.
We all learn from each other here and I know that when I was diagnosed, also with DCIS, I learned so much from others here about both the physical and emotional effects of a cancer diagnosis. For thirty years prior of my diagnosis I had about 6 lumpectomies all of which showed no signs of cancer. To say I was shocked to be told that the last lump was a dcis was terrifying to say the least and I was so relieved to join this group. My diagnosis and surgery were all handled by a general surgeon and in retrospect I wish my surgery had been carried out by someone at the cancer centre. Are you, because of your history, being looked after by a cancer specialist? Are any of your lymph nodes involved?
To answer your question about decision making……. I am older than you at soon to be 77 and I asked for a bilateral mastectomy with no reconstruction which both my husband and I thought was the best as I thought it gave me the best change of no more surgery and the associated stresses. Another factor in my choice was that I live on a ferry dependent area of BC and if I had opted for radiation the logistics of living away from home for a number of weeks was something I did not want. I have never regretted my decision although I think my surgery could have been carried out better. I have ongoing problems with lymphodema and adhesions. Aftercare where I live is also really not available. I now go regularly to a rmt who helps a lot.
When making a decision there can be so many different things which may be important such as family history, mental as well as general physical health, personal situation and relationships, what your doctors consider the chances of further surgery if you choose not to go the mastectomy route and how you feel about your body image. Lots to think about and it may help to talk to a counsellor or trusted friend as well as discuss things with your mother.
We are always here to listen and help and I am sure others will jump in with their experiences.
@MCoaster thank you so much for sharing your story and insight with me. I’m so sorry that your surgery didn’t go as well as you would have liked. That is definitely a fear of mine. My surgeon is excellent and so far I’m happy with the results. I will meet with a plastic surgeon who special in breast reconstruction after mastectomy and she will go over all of my options. It must be hard to live so far from proper care and I’m grateful that you have a nurse to help you.
thank you again. You have definitely prompted some questions to think about.
Hello @EmilyD sorry to hear you are here, but you won't find more supporting people anywhere else.
I am a lot older than you. I had calcification show up on my mammogram which proofed to be IDC. ER and PR positive and HER2 negative. I was told it was caught early, so got scheduled for a lumpectomy. As it turned out, the surgeon did not get clear margins, so he scheduled me for a second lumpectomy. Again, did not get clear margin, we were dealing with IDCIS. He and the oncologist suggested a third lumpectomy. It was such an emotional roller coaster for me, that I felt a mastectomy was probably better for me. Against the surgeon's and oncologist's advice. In order for me to get a mastectomy, I had to change doctors, hospitals and got a plastic surgeon and went ahead with a mastectomy with immediate reconstruction. I had three surgeries within 4 months.
But to get to that conclusion, I was agonizing for two weeks of flipping back and forth between the lumpectomy and mastectomy. My family had opinions, my friends had opinions, my doctor's had opinions, but it came down what I felt comfortable with. Hands down, the hardest decision I had to make. Once I made it, I felt at peace. I wanted to do what I thought gave me the best chance of beating this thing……….
Sending you hugs in this difficult decision journey.
Your family history is very close to mine, with both my maternal Grandmother and my Mother having breast cancer. I was diagnosed with DCIS, ER+ PR+ HER2-, pre-menopause at the age of 53, at the end of January, 2016. Now, before I go further, I will say this, your decision on whatever treatment you chose is so very personal and must be right for you, I will share my experience. I, also, had screenings, consistently did self exams, etc, from the time I was 35 years old. Through out the years, I always said that ‘IF’ I ever am diagnosed with breast cancer I will have bilateral mastectomy. Remember, this is how I felt and what I wanted to do. That being said, fast forward to 2016 and, there I was, having to actually make that decision. I still felt the same way at that diagnosis that I did back in the 90's. My surgeon still wanted to give me a bit of time to really be sure of what I wanted, considering I just received a cancer diagnosis and I was in shock, and asked to see me a week later. He was very supportive of my decision and I had the bilateral mastectomy in February, 2016. My surgeon also had said to me that he wished more women would make this decision as it would take away risk factors and also give a plastic surgeon a ‘new canvas’ to do reconstruction, if the patient so desired. Again, this was my experience with my surgeon. My surgeon did a most beautiful job of my surgery and I have remained flat. My motto has always been, “Boobs are not worth dying for”. Again, your decision will be a very personal one that only you can make but I encourage you to do as much research as possible and keep asking all questions that you have. I hope that you have a good family support system, too. We are all here to support each other through this journey that none of us wanted to go through. We are all unique but we are all in this together. I wish you well!