Don't know what to do
Hi I was diagnosed with DCIS in 2015 had it taken out and I have had radiation done, now i have another one come back in March this year and had it taken out way were both benign now my specialist is ...
Forum Discussion
@Jt1970 Sorry to hear your story but hopefully myself & others on this forum can give you some helpful advice. I was diagnosed with DCIS in Dec. last year. It was stage 1 but invasive. I remember going through what you are now in between seeing my GP for the result & prior to my first meeting with the surgeon. In the car on the way to the appt, I was wondering what I would have to chose as I was sure she would ask me the same question, "Lumpectomy or Mastectomy". I felt sick not knowing what to do & i don't handle decision making at the best of times. When I went to see her, she looked at my scans & test results & SHE made the decision for me. She chose lumpectomy & she would fill in the gap with tissue from under my breast. I walked out of her office feeling like a weight had been lifted. She was confident in her decision & I trusted her decision. She didn't even hint at me having a mastectomy.
My surgery was very successful with clear margins. I did have family history of cancer with my mum dying of ovarian cancer when she was 46 y.o. so I was given the gene test. I had been booked to have 16 doses of rad treatment just as a precaution but the rad onc wanted to wait until the gene test came back as if it was positive, he thought i may consider having a mastectomy instead of rad. So that was another time of panic as i didn't know what i would do but luckily the test came back negative so the rad went ahead. I did speak to my surgeon & she said that even if the gene test came back positive, she would have recommended i still have rad treatment but with more regular checks from her.
I guess i have been lucky that my medical team have made my decisions for me & decisions that i am happy with. i also got the feeling that my surgeon would rather put me through the least amount of surgery as possible & not jump into giving me a bilateral mastectomy when i only had an initial diagnoses of DCIS. She only operated on what i had at the time & not what I MAY get in the future & she was confident with regular checks, she could monitor any changes.
So, I have now had a lumpectomy, 16 doses of preventative rad treatment & I have just come out of hospital two days ago after my medical team & myself chose the option of me having my ovaries & tubes removed due to the high risk of me developing ovarian cancer. That's my story & I am so happy with the decisions that my team have made for me so I didn't have to make the call on what operation to have.
The idea of getting a second opinion is a good one & also just going with your gut feeling. The advancements they are making with testing is only going to get better so why have a bilateral mastectomy for DCIS, when regular checks can monitor any changes.
Your goal posts constantly change so I have learnt to just deal with the cards you have been dealt with instead of worrying about something that may not happen. Get the gene test if you qualify as this may help your decision & see if their is any family history that may effect your decision. I have read posts of other women who have had bilateral mastectomies for DCIS after their surgeons recommended it & are now regretting their decision but others who are so nervous about the possibility of getting a recurring cancer who are happy with their decision to go the whole hog & get them both removed.
It may seem overwhelming at the moment but the more info you get & medical advice you receive, it will help you make your decision or you will find a surgeon who you will trust to make it for you. i wish you well & know what you are going through. For me, every time i have been confronted with a crossroad, I have been blessed as my gut decision has been the same as that given to me by my medical team which has made this journey easier. take time & ask questions & listen to the advice from others but most of all do what you think is right for you. many hugs xxxxxx
My surgery was very successful with clear margins. I did have family history of cancer with my mum dying of ovarian cancer when she was 46 y.o. so I was given the gene test. I had been booked to have 16 doses of rad treatment just as a precaution but the rad onc wanted to wait until the gene test came back as if it was positive, he thought i may consider having a mastectomy instead of rad. So that was another time of panic as i didn't know what i would do but luckily the test came back negative so the rad went ahead. I did speak to my surgeon & she said that even if the gene test came back positive, she would have recommended i still have rad treatment but with more regular checks from her.
I guess i have been lucky that my medical team have made my decisions for me & decisions that i am happy with. i also got the feeling that my surgeon would rather put me through the least amount of surgery as possible & not jump into giving me a bilateral mastectomy when i only had an initial diagnoses of DCIS. She only operated on what i had at the time & not what I MAY get in the future & she was confident with regular checks, she could monitor any changes.
So, I have now had a lumpectomy, 16 doses of preventative rad treatment & I have just come out of hospital two days ago after my medical team & myself chose the option of me having my ovaries & tubes removed due to the high risk of me developing ovarian cancer. That's my story & I am so happy with the decisions that my team have made for me so I didn't have to make the call on what operation to have.
The idea of getting a second opinion is a good one & also just going with your gut feeling. The advancements they are making with testing is only going to get better so why have a bilateral mastectomy for DCIS, when regular checks can monitor any changes.
Your goal posts constantly change so I have learnt to just deal with the cards you have been dealt with instead of worrying about something that may not happen. Get the gene test if you qualify as this may help your decision & see if their is any family history that may effect your decision. I have read posts of other women who have had bilateral mastectomies for DCIS after their surgeons recommended it & are now regretting their decision but others who are so nervous about the possibility of getting a recurring cancer who are happy with their decision to go the whole hog & get them both removed.
It may seem overwhelming at the moment but the more info you get & medical advice you receive, it will help you make your decision or you will find a surgeon who you will trust to make it for you. i wish you well & know what you are going through. For me, every time i have been confronted with a crossroad, I have been blessed as my gut decision has been the same as that given to me by my medical team which has made this journey easier. take time & ask questions & listen to the advice from others but most of all do what you think is right for you. many hugs xxxxxx