After a series of mammograms and an ultrasound last year, I had two biopsies on January 9th. I found out the next day one of the sites was positive for DCIS, Stage zero, Grade 3. hormone stuff was all negative. I am scheduled for a lumpectomy on 2/13 and my surgeon said I should expect radiation following for 5 days to 6 weeks. Not fun. Nervous about it but grateful for treatment options. We have no family history of breast cancer so this diagnosis came as a big surprise to me. I'm learning all I can about the diagnosis, treatments, side effects and outcomes. It all seems a bit much and honestly at times it seems overwhelming. But I thought I'd try connecting with others that are maybe going through this or who may have gone through it. I'm doing my best to stay focused on what is right here in front of me - mindfulness, staying busy, keeping up my normal routine before it gets thrown into a bit of a spin cycle on me.
Beyond that, being way more than a diagnosis (and really stressing to myself the importance of that), I'm 58 years old, divorced mother of 4 amazing and grown children and 1 grandson who is the absolute light of my life. I work full-time and love what I do. Philosophically - I wonder what this is all intended to teach me - one lesson already - Do NOT neglect your health ever! LOL. The rest seems to be more about letting go of any concept of control I may have had in my life. I can make decisions but control? Not so much.
So, that's it for now to prevent novel writing in my intro post.
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EverCuriousOne
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The books that I read, frightened the life out of me... Note to self, don't read them. It wasn't half as bad as I thought it was going to be. Ok, initially the operation for me was the worst as I'm not good with anaesthetic, so they did keep me in overnight. ( In the UK they do the operation and send you out the same day), and it was it an unusual position (where a wire of a bra goes), so was a more difficult operation. The radiotherapy was not a problem either, here they do 5 days of what they class as 5 minute bursts. No pain, only on the last couple of days it started to go redder. I used a lotion called H2K cucumber lotion on my breast to calm the redness. The only thing I wish I had done (as I seemed to be a rush job) was massage my breast for the following year, as my first mammogram showed a lump that got me worried again, but it turned out to be a dead mass. Massaging it the past year with the H2K lotion has since got rid of it. Good Luck x
You know, I have had times of over-saturation in the topic and some of the things I've read too, were absolutely frightening. My upcoming surgery will also be outpatient (which I absolutely love). I think I am more fearful of the radiotherapy as I don't know how long it will be part of my future. My hope is for the shortest amount of time. I'm glad to hear that you got through it with no pain though. That's really heartening. I appreciate your reply and will keep the reminders in mind. :). Sending you all the good thoughts.
Dear EverCuriousOne , when my daughter, 40, was diagnosed with breast cancer in 2016, we took a 2nd opinion from a woman doctor. When we asked her why it had happened to her, what the causes could be, she said dryly "Keep good health practices, take the treatment and get on with your life. Don't worry about what, why..." I thought it was the best advice at that time. My daughter too had a lumpectomy, chemo and radiation and is now well, 8 years on. All the best for you. Enjoy your work, your loving relationships and joy in life.
That's good advice. I'm so happy to hear that your daughter got through treatment and hasn't had to look back. That's just the kind of story I need about now!!! Thank you.
Hi ECO! I am 55, and had widespread DCIS when I was 37 - back in 2007. After trying for clear margins with a lumpectomy unsuccessfully, I opted in for a rt breast mastectomy. (The other breast was fine and I decided to leave it. I have no family history, was negative for the BRACs.) The pathology all came back completely clean, so I did nothing further. Radiation was not even on the table.
I'm surprised radiation is being recommended for Stage 0. Is it because of the Grade 3? I don't remember what the grades mean! I would encourage you to get a second opinion on the radiation. Tell your radiology oncologist you'd like one and she/he should be happy to give you a name of a colleague. Ideally, you'd want to see someone affiliated with a different medical center or hospital. (So here in the NYC, there are TOO MANY. Weill-Cornell, Mount Sinai, NYU Langone, Sloan Kettering...so that's easy to do.) Any good doctor will encourage and welcome you getting a second opinion and help you even navigate to someone. These are all people who will then be part of your health network for your use or for you to recommend to others, so it is a very useful waste of time, plus it will further bring into magnification the reasoning and decision making behind your treatment plan.
Bring your patient advocate to all your appointments to take notes. (More on this person below.) It's pretty darn hard to take notes and be present in a regular checkup appointment. But these kind of appt's make it impossible!
My radiation experience:
In 2016, I had a new occurrence on my rt side, in the wisps of breast tissue left after the mastectomy. That was a specific little tiny raisin sized tumor and my breast surgeon invited me to a huge meeting between him and all the departments to discuss whether or not I should do radiation even then - more to knock any micro-invasions out of the park. Perhaps that's why it's being recommended for you?
Within a few years, the radiation did negatively impact my right breast reconstruction (an implant) and it's been an ongoing issue so I'm now preparing for a flap surgery to replace the skin and tissue and it's a major surgery. You're not needing reconstruction, but make sure your docs are giving you the full picture if any side effects from radiation - immediately and down the road.
All good things for you during this time. Even Stage 0 is stressful. I'm a single mom with a 15 year old daughter and am completely wow-ed that you have 4 grown kids + your wonderful grandson to boot. They are lucky to have you!
Don't be shy about asking your inner - and outer - circle for help and care and papering and nurturing. You are clearly amazing at doing that for others, but this will be a time where you must practice doing that for yourself. If you don't have someone who can be your patient advocate, maybe zero in on who that person can be. This could be one of your kids, a friend. Hell, if you have the budget you can hire great people to do this too!
I hope all goes very well and that you continue to be kind to yourself, and are surrounded with wonderful, loving people in this process.
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Stage 0 DCIS Double Mastectomy
Fulvestrant and Kisquali 
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