DCIS Stage 0 High Grade HR+
Hello to all you brave women!!
I just joined this site and am making my first post. I am hoping for guidance and advice and what anyone else has done as I am feeling anxiety and some stress about what to do.
I am 55 years old and was diagnosed in June at 54 years. (I just had a birthday in Oct)
As in my title I was diagnosed with DCIS Stage 0 High Grade (Grade 3) HR+
I had a lumpectomy in the left breast, no lymph nodes, and am now awaiting to start 9 rounds of radiation. 5 in the whole breast and 4 at one particular area. Margins were clear, however one side of the margin was only a 1mm clearance so that spot is the one that is getting the extra 4 rounds.
I don’t know if I should start Tamoxifen. My MO did not seem overly concerned about me taking it and left the decision up to me.
I am waiting to see if I qualify for genetic testing.
I should add that my sister who is 62 is Stage 4. Breast initially and now her bones. She did not do radiation or Tamoxifen. Her recurrence came after 12 years and is now on Chemo and is doing very well.
Did anyone opt to not take Tamoxifen or an AI that is similar to me? I’ve had the lumpectomy and am doing the radiation. IF this were to come back as another DCIS, I’ll be honest, I am fine with another surgery.
My concern is with all the possible side effects.
Many thanks!!
Comments
-
@redwinelover And welcome to you, brave woman… You’re doing such a wonderful job staying proactive and informed — especially by pursuing genetic testing, which is so important given your sister’s history. With a first-degree relative who has Stage 4 breast cancer, you should absolutely qualify for testing, so it’s great that you’re moving forward with that.
Keep advocating for yourself and asking all the questions you need. It’s completely normal to feel uncertain and anxious right now, but you’re handling everything with strength and care. Continue leaning on your medical team and getting professional opinions until you feel confident in your next steps. Sending you calm and encouragement as you move forward. 💕
0 -
Hi again, @redwinelover! Just wanted to check in and see how things are going for you. Have you started radiation yet? Feel free to pop back in and share an update. There are lots of members here with DCIS who can relate and offer support. We’d love to hear how you’re doing!
The Mods
0 -
Hi @redwinelover you are doing great! I have what you have as well but I am a little earlier in the process and I am waiting for surgery. How was surgery recovery for you? Lifting, driving, wound healing etc? Also is there a doctor verifying you are all healed up before you start radiation? Are you taking time off work for recovery and/or radiation?
0 -
Hello moderators
My apologies for not messaging sooner.I’ll be honest. This is all so new to me and I’m still trying to figure out how to send messages. Hoping this reaches to all who check this post. Lol
I am doing ok. I have my off moments here and there throughout the day. I called the Cancer Centre yesterday and they told me they are still working on my “planning” . I hope to start radiation the week of Nov 17th.
I am scheduled for 9 rounds. 5 on the whole breast and 4 “boosters” on one part (anterior) where the margin clearance was 1mm.
I feel anxious about just getting the next process started on this journey.
I see the MO Nov 28 for a follow up and to see if I qualify for genetic testing.
I’ll keep you all posted
Many thanks and embracing with strength
Redwinelover .. and yes!! I still enjoy a glass of wine!!
2 -
Hi there sunnywithshowers
Thank you for your message
I am new here and still trying to navigate how to use this platform
Please tell me more about your journey.
My surgery was on Sept 17 2025. A left lumpectomy. My recovery went well, but you have to give your body time to heal and rest. And not overdo it. I was folding tea towels 3 days post op and it was too much for me. I did not drive for 3 weeks.
No lifting on the surgical site .. more than 5 pounds for the first 2 weeks was the instructions from my surgeon.My wound healing was terrific. No infection.
Even after, I did not do any lifting. No grocery shopping, laundry or house cleaning like vacuum.
I saw the surgeon for a 3 week post op and will see her again for a final follow up. I am also under the care of my Radiation oncologist. I am due to start radiation the week of Nov 17 for 9 rounds
I know for me, the waiting period is at least 6 weeks post op to allow for the scar tissue to heal before radiation.
I will be about 8 weeks post op before I begin. I am starting to feel anxious waiting to start the next process in my journey.
And I have been off work the entire time. I was told be the cancer team I will need 3 weeks off AFTER my last session to recover.
I hope this helps you
So nice to have this family to lean on for support
Many thanks and embracing with strength
1 -
Hi @redwinelover, we're sending you lots of support as you approach your upcoming radiation treatment - with just 9 sessions, you'll be done in no time! You can connect with others who are also starting, or are currently undergoing, radiation on our November radiation thread.
Regarding your questions and concerns about whether or not to take Tamoxifen or an aromatase inhibitor, our hormonal therapy discussion boards may be useful to browse through and gather some firsthand input from others.
Please let us know if you need any help on these boards. You are not alone here!
0 -
Thank you for those tips. I will look at those discussion boards today.
I will reach out if I need help. I’m just anxious about getting a start date!!
Embracing with strength!!
0 -
hi @moderators
Thank you for your message. I am still so new to this forum and trying to figure out how to message.
I did reply but not sure if it was sent.
I am still waiting to hear from the Cancer Centre about my start date. That part is making me anxious.
When I know my start date I will be able to prepare myself mentally knowing that I have a date for the next phase in my journey.
Embracing with strength!!
1 -
Hi @redwinelover, we did see your reply posted up above! If you're still having questions on how to send messages to other members in this community, this "how-to" tutorial may be helpful:
You've got this! It does get easier once you have a definite treatment plan established, and are then able to take some control back over your situation. Feel free to reach out to us anytime you have questions.
Warmly,
The Mods
0 -
Hi @redwinelover my surgery is 1st week of December even though I opted for a lumpectomy they recommended plastic surgery to smooth everything out expertly. The calcifications are quite a large area about 125 cm3 even though it's DCIS. I was lucky enough to get a joint surgery with both surgeons, since I am quite worried about the recovery process
Did you hear that for DCIS, you can opt for Tamoxifen for 3 yrs 5mg instead of 5 yrs 20mg. That's what I am thinking to do, as long as I can quit early if I want to have a kid.
Did your final pathology confirm the DCIS?
1 -
Hi @sunnywithshowers
i wish you all the best with your upcoming surgery!!
Happy to hear they will be able to do BOTH surgeries at the same time.
Recovery is always difficult, but the key to recovery will be rest. And hopefully you have some help while you are healing.
I’ll be honest. I don’t even know the size of the mass that my surgeon removed. She told me it was small. I see her on Nov 21 for another follow up and will request a copy of my Pathology report. But it was confirmed by her at my first follow up as DCIS.
I had the lumpectomy, but she manipulated the breast tissue to “even things”… and that has resulted in a small bump which is internal scar tissue, that I can feel when I push down on that area. That will eventually go away.
I live in Canada and I don’t think we have the 5mg strength of Tamoxifen. I happen to work in pharmacy and have not ever seen that strength available. 10&20 are
I have read so much about that medication it makes my head hurt!! I am leaning towards not taking it. But right now, I am anxiously awaiting a phone call with a start date for my radiation. I had the markers done on Oct 28 and was to begin about 2 weeks after. Now we are at 3 weeks!! And I just want a start date. I’ve called them once and will call again on Thur if I don’t hear by then.
Embracing with strength!!
1 -
Hi @redwinelover yes it was a trial in Italy (TAM-01 clinical trial) and is now adopted in Europe as standard because it is as effective as the larger dose. They cut the 10mg in half I believe. Worth following up w your doctor I would think.
Hopefully they call you really soon regarding starting radiation!
My doctor didn't tell me a size either.. I pressed for it since they were suggesting plastics. TBD the final size of course.
Best wishes and positive vibes your way!
0 -
Hi@sunnywithshowers
Thank you for that info!!
I will talk to my MO when I meet with him on Nov 28. I will find out if I qualify for genetic testing as well. That “may” also affect my decision to start Tam.
No phone call today in regards to radiation start date. I’m just so up and down!!
One minute.. I’m saying to myself.. it’s all good and they will call you and for the most part I have a positive attitudeYesterday, I went with a friend to a greenhouse with a huge and beautiful Christmas display full of trees and decorations. It was a nice change of scenery for me.
Next.. I’m not in a good mood and just pacing waiting for the phone to ring
Was anything discussed with you about radiation afterwards? Or just the Tamoxifen
Positive vibes coming your way as well and thinking of you and you are preparing for your upcoming surgery in Dec. We are all on this journey together.. in our own ways but also definitely together, and that brings me so much comfort!! 💗
Embracing with strength
1 -
Hi All
Well!! I finally have a start date with my continued treatment for radiation. I called the Cancer Centre yesterday for the second time. She called me back this morning, and said
We have ONE more spot open tomorrow.. Nov 21!!
So I continue my journey now to healing. I don’t feel nervous, just relieved that I am starting.
And I see my surgeon today for another follow up.2 -
Hi @redwinelover I am glad you were able to start radiation how is it going so far? Let me know what info you find to help you make a decision regarding Tam
0 -
Hi@sunnywithshowers
Thank you.. but it has been quite the roller coaster for me. When I had the CT Simulation done, I apparently did very well with holding my breath for them to create my baseline. I had my first radiation session on Fri Nov 21, but I had a hard time reaching my baseline and holding my breath. I did manage to do it but it was a struggle.
Anyways.. I went on Monday Nov 24th and could NOT do it. I was so upset. So no rad on Mon. Yesterday I met with the RO and she said when they do the CT SIM they do markers and plan for radiation treatment to hold your breath and not holding breath.
So they redid my map planning and I am to continue today!! Wednesday
The other option was to redo the CT SIM with me not holding my breath as “deep”
But she recommended for me doing it without holding breath. That it may be too difficult for me with me being anxious.
So I’ve only had the one treatment, and will continue for 8 more starting today (Wed). I am just relieved I can start again today.
I am meeting with the MO on Friday
I’m regards to Tam.. my head hurts from all I have researched. I have decided to not take it
I’ve read so many people stop mid way through taking it.
Based on the side effects (possible) associated with it. And speaking to my surgeon as well who told me only 2 of her DCIS patients took it and both of them stopped taking it relatively quickly after starting because of the joint pain. (One patient said she couldn’t walk up the stairs)
It’s a personal choice and we all have to make the right one for YOU!
I feel for me, with DCIS.. Stage 0.. which is pre-cancerous, it was removed with the lumpectomy and margins were clear, and I am doing the radiation. Also taking a holistic approach with lifestyle (diet- I already eat healthy but will add more veggies, exercise, meditation and I’ve read about the benefits of Tai Chi as well and doing a few other things as well )
And I did a risk calculation for recurrence.. and I was at 8%. Surgeon also told me I have options IF it was to recurr
Please keep me updated on how you are doing as well, as your surgery date is coming up. How are you feeling in the present moment knowing your surgery is soon
I see beside your user name that you are in the U.S. Happy Thanksgiving!! 😊
Embracing with strength
Redwinelover
0 -
Hi@sunnywithshowers
Well, I continue with this up and down in regards to treatment.
I went on Wed, and once again they could not continue with treatment with me doing free breath.
My alignment of my sternum was straighter, as a result of a massage I had gone for. (Which I asked my team about and was told I could go)
They said, a massage normally does not affect anything but in my case, when my massage therapist worked on my collar bone, it straightened out my sternum
So, I did not have treatment on Wed, and had to go back on Thur for another CT Sim. This time I didn’t ot take a deep deep breath as the tech told me it doesn’t take much to keep the heart away.
I was such a mess on Wed, came home crying my eyes out to a very good friend over the phone and drank wine. I just need a break from being positive!!
Now with a new plan and mapping being done I am hoping to restart the week of Dec 1st.1 -
Crying is good, I had a good cry and felt much better. I am so glad you guys landed on a solution. Free breath sounds a lot easier hopefully good luck w that going forward now!
I think you are absolutely right that with all this its hard to know what is the right thing to do and we have to just choose and trust our choices!
With my surgery getting closer and closer I all of a sudden have soo many questions for the surgeons so I will try to call them also they are planning to talk to me pre surgery as wellI am trying to hope for positive margins and clear lymph nodes, because everything else is secondary to that right? With DCIS we are lucky in that that is 'good news' somewhat, so I hope I stay in that lane very much.
I also start my leave from work this week. Nervous about my coworkers gossiping about me being out on medical so I might just tell them my last day.
I have been eating eggs and as a self proclaimed egg-hater I have never eaten so many eggs in my life. Honestly they are pretty delicious with the right toppings. I feel healthy is easy and makes us feel stronger and more grounded.
Sending positive vibes your way
sunnywithshowers
0 -
hi@sunnywithshowers
Well, it sounds like we both needed a good cry. Yes, it felt good but still, being positive is not easy to be or do full time.
I was so tired of going to the hospital with NO results!!
I had the CT Sim done again on Thu. It went well, and now “if” I still cannot reach my baseline I will do the radiation with free breath. But this time, the tech coached me, and I did not take such a deep breath in, so my baseline will be lower.
I met with the MO on Fri. He asked me what my decision was on the Tamoxifen. I told him I declined, and he asked me Why?
Which I liked because he wanted to hear from me. I gave him my reasons, and he agreed with me. But once again, it’s YOUR choice based on what your pathology report will show.
Don’t worry about that right now, because you don’t have any answers.
Your focus is on preparing yourself for surgery. It will be successful and once you have the results, then you look at what your options are.
Write your questions down, even the ones you want to ask for after the surgery.
You are right.. DCIS .. what we have , is the “good one” to have.
Still, we have are emotions and feelings that surround what we have to face.
Oh work.. well gossip happens no matter what!! I ended up telling everyone. But my work place has about 10 full timers. Plus I’m in the medical field so people giving me their professional advice also helped. I didn’t want to tell certain people and then be tip toeing around others. For me, it is what it is, and most of the people I work with are super supportive and concerned.
Haha.. eggs are good!! And also, veggies in the crucifirous (spelt wrong) family
Broccoli, cauliflower, Brussel sprouts, raffia etc!!
Okie dokie.. sunnywithshowers, I am praying and thinking of you from afar. I wish you all the best. Please rest up . Just take one day at a time, and then one week at a time.
Please message when you can
Positive vibes coming your way!! And just Breathe
Embracing with strength
Redwinelover 💗
0
