DCIS Grade 2 Diagnosis
Dear Brave Pals,
I had lost my Mum to Metastatic Gallbladder Cancer at the age of 60 within 2 months of no symptoms to diagnosis to farewell. So cancer is the most dreaded word in my family.
Unfortunately, last month I was diagnosed with DCIS Grade 2 (with expansive Camedo Necrosis, ER/PR+ as per my Biopsy report). They had found calcifications during mammogram (2.4cm area) and performed the Vaccum assisted biopsy to confirm it. They also found focal low grade DCIS on the samples without calcification.
Based on the advise of my Breast Surgeon, I opted for Lumpectomy and in recovery now. I have been a medically fit person until now, so this news came as a shock. However, me being a strong person (or at least I think I am strong) accepted it and went ahead with treatment by only informing about this diagnosis to only handful of close family members.
But, now comes the part, where I feel so anxious and looking for some like minded people and landed here. I am currently waiting for the post surgery HPE report and I was told by my surgeon that while it is not common, but it might happen that there could be upstaging. So they will suggest next treatment plan accordingly. This is the part scares me a lot and specially the thought of me being trapped in this dreaded disease and not be available enough for my young kid as well as Job security. I am trying to not think too much, but not able to help it.
I also have many stable lumps in my both breasts and are considered benign so far by my radiologist/surgeon.
Any suggestions on what to expect in my upcoming HPE report based on your experience or what points I need to take care when deciding the next treatment plan when meeting doctor next week (as of now, my surgeon said, I would most likely have to take Radiotherapy)? How do you cop-up with such diagnosis and is there anything I can do in future to avoid re-occurrence or getting an IDC (I do not want to do Mastectomy due to my young age).
Thank you in advance for all kind support and advises.
Comments
-
Hi @imhope , welcome to the community. We’re really sorry for the circumstances that bring you here, but we’re glad you found us.
Waiting for your pathology report can be very stressful. You’ve already completed your lumpectomy, and your care team will use the final pathology to guide the next steps, which often include radiation after surgery for DCIS.
You may find these pages on our main site helpful as you prepare for your upcoming appointment and to better understand DCIS and possible treatments:
We’re glad you’re here and sending you support as you navigate the next steps.
The Mods1 -
Thank you so much for all supportive words and sharing the important information. Really appreciate the help!
1 -
With my HPE report out with Positive Margin (along 1mm long front, fortunately still DCIS grade 2) and Posterior focal involvement , now I have to undergo second surgery to clear the margins (and another long wait for next HPE). Is this common to go for re-excision to clear margin? Can doctor tell that there won't be third surgery at this point?
PS: Thank you Mods for sharing "Understanding Your Pathology Report ". Helped a lot.
2 -
Hi @imhope, I'm sorry that you have to undergo a re-excision to get the 2 mm margin required for DCIS. This happens in about 20% of surgeries. There is a 13% chance that people who have this done need a third surgery meaning that about 2.5% of those who undergo a lumpectomy for DCIS fall into this category.
There is a surgical system called LumiSystem (LUMISIGHT, Lumicell DVS) which is FDA approved to help surgeons get the needed margins. Before surgery a fluorescent agent which is taken up by cancer cells is injected. The surgeon is able to use a scope to see if anything lights up and is able to remove that tissue before closing. My breast surgeon was using this when it was in the clinical trial stage five years ago. The injection was no big deal (I also had another tracer injected for sentinel node biopsy since I had IDC). There was some breast and urine discoloration for a while. I don't know how widespread the use of this is now but it sure seems like a good idea for DCIS where the margin size is critical. Good luck with your next surgery.
2 -
Hi @maggie15,
First of all, tons of wishes for your complete recovery. Hope you are doing well.
Thank you for sharing such valuable insights. Numbers always help to reduce the anxiety (odds are less to fall in 2.5%).
I did some search and found that in Singapore, they have not yet approved LumiSystem, so unfortunately I can not get benefitted from it. Hoping that 2nd surgery will already achieve the clear margin and no invasive cells. 🤞
2 -
Hi @maggie15 ,
Hope you are doing well.
Well, I think odds are not that less to fall in 2.5%. Here I am, preparing for the 3rd Surgery next week. Still no 2mm margins (0.1-0.3mm). They found new Satellite lesions (with clear superior margins though).
I checked with my Doctor if all such lesions can not be detected at once via some tests like Memo, US or MRI and answer I got it given the size and early stage, these imaging tests are not sensitive enough to spot them all. So surgical biopsy is the only option if I am keen on preserving my breast (or alternative is to do Mastectomy, which will be bit aggressive at this stage of DX. I personally also do not want to lose my organ at this age and surgeon has done a great job so far to preserve the shape). She also added that MRI specially will not be very helpful in my case as it will also detect some harmonal activity impact as abnormal and that may not be cancer.
So hoping the 3rd one will be the last one and there is no % for 4th round. Never knew I fall in such rare group (*sarcasm).
The positive part of all this is that it is still DCIS -II and no invasion found. I am assuming at this stage, there is no possibility of finding any hidden invasion. Can someone assure me about this so that I can have a peaceful waiting period for my next HPE report?
1 -
Hi @imhope, I’m sorry that the second excision did not yield the necessary margins. How frustrating for you. It’s fortunate that the cosmetic results have been good. Hopefully the third time will be the charm. I agree with trying to stay with a lumpectomy if possible.
It’s unlikely that invasion will be found since none has been seen so far but I have learned that nothing is 100% certain when it involves breast cancer. I hope you will have good news to report after your next surgery.
1
