Upgraded post-lumpectomy to IDC
I am new to this forum and want to share my experience so far at this very early stage.
I went in for surgery in mid-April for a lumpectomy / excisional biopsy) of what was previously diagnosed per biopsy as ADH (atypical ductal hyperplasia) which is a benign condition.
Pathology of removed tumor upgraded me to IDC ( ER+/ PgR+/ HER2 ~ so hormone receptor positive / HER2 negative) & DCIS diagnosis.
Since we were not aware of the malignancy at that time, no sentinel lymph node procedure occurred during that surgery.
I have just had a sentinel node biopsy yesterday and now again in a waiting period for those results so that my medical team and I can determine next steps.
Radiation appears to be a definite but depending on lymph nodes (2 were removed) results, the medical oncologist will know which OncoType test to be performed on the removed tumor.
The waiting period for both pathologies has been hard because I am a person who doesn't like to be in limbo and patience is not one of my strengths.
I look forward to conversing with others in these early stages of diagnosis and treatment decisions.
Comments
-
Hi @joyinside! Thank you for sharing your story and welcome to the community. It’s completely understandable that this waiting period feels really hard, especially with so much still up in the air.
Take a look at these resources when you feel ready, they may help you feel a bit more supported and informed as you wait for next steps:
More discussions and forums:
We’re glad you’ve joined us, and we’re here with you as things move forward.
The Mods
0 -
Your experience sounds almost like mine.
I had a cluster of microcalcifications on a routine mammo that I had biopsied. The biopsy initial came back negative, but the radiologist asked for a second look, and it was positive for DCIS.
I recently had a lumpectomy (two weeks ago). There wasn't a discernable lump, but the surgeon removed the area that biopsied positive and sentinel node. The sentinel node also initially came back negative, but when the in-depth path report came back, it was positive. That report showed IDC with intermediate to high grace DCIS with areas extending to the margins of the specimen. I just got this report Wednesday (three days ago) from the surgeon. So far it is showing PR -, HER2 equivocal/low with FISH test pending.
The surgeon and I discussed a second surgery to remove more tissue around the original site or a full mastectomy of the right breast.
I see my oncologist on Monday and hopefully all the testing will be back by then and we can discuss treatment and surgery options. But it sounds like radiation and a second surgery is definite with chemo possible.
This waiting is also driving me nuts. I want to get it over and started. I still work full time and need to figure a plan for that as well. Luckily the company I work for has temporary disability insurance and I can be off 6 months at 80% pay and no loss of any benefits. I just need to get all that paperwork lined up.
As a nurse case manager, I carry a caseload of over 50 clients and will need to get my team up to speed on those clients before I take off. I just have so much I need to do to plan for all this and I feel like I am in a holding pattern right now and I hate it.
I am willing to connect and look forward to hearing from others who are/were in the boat and how they are handing it.
0 -
Hi @newbie57, A surgery result that is quite different from what is expected really does upset your life. I had a callback and two BIRADS2 mammograms over the course of two and a half years until an oral surgeon informed me I had cancer since I had developed osteomyelitis of the mandible. I was sent for another mammogram where suspicious calcifications showed up and was diagnosed with 1.6 cm grade 3 DCIS after a biopsy. A radiologist apologized for the delayed diagnosis due to one questionable and two bad reads by her practice partners. At that point I decided to ditch my small rural hospital and drive 100 miles to a large teaching hospital. Their imaging showed a 2.8 cm area of concern and the surgeon told me there was a good chance there was IDC (turns out the pathologist at the local hospital had missed it on the slide that eventually arrived.)
I took part in the tail end of a clinical trial using a Lumi system where a cancer detecting tracer in addition to the one to find sentinel nodes was injected so that any cells with cancer glowed under the light. A 3.2 cm lump of IDC with a small bit of DCIS was excised along with three nodes. The surgeon did an oncoplastic repair of the lumpectomy site using a flap of breast tissue so that I had a really good cosmetic result. One of the nodes turned out to be positive but my margins were good (thanks Lumi), my FISH test (which takes forever) came back negative and my OncotypeDX was on the right side of the borderline so I didn't need chemo. I did have both whole breast and axillary radiation because of the positive node.
The Lumi system is now FDA approved but I don't know how widespread its use is. Also, if the DCIS is spread out too much it is difficult to get the required margins with a decent cosmetic result from a lumpectomy. With a positive node you are probably going to end up needing radiation even with a mastectomy. If you choose reconstruction you should discuss with a reconstructive surgeon how rads might affect your healing with an implant vs a tissue flap. Every new finding requires learning more about breast cancer treatment but eventually when the updated plan is finalized things really do get better. The waiting is really hard but developing additional patience was one positive SE of it.
I worked through treatment since it was during the COVID years and I was teaching online. My SIL is a nurse case manager who works solely online but I would seriously consider using your disability insurance (maybe not all at once depending on your treatment schedule.) You must be a great nurse since you are so intent on handing over your patients with complete plans but if you were in a medical situation where you were unable to prepare in advance things would get done without your input. You need to focus on your own healing so that you will be able to return to your demanding job.
I hope that your upcoming appointment goes well and only one additional surgery is required. It's hard to predict how things will turn out since there are so many personal variations but this site has many threads dealing with just about anything that transpires during treatment. It's good to read about the experiences of others in similar situations or ask a question you can't find an answer to. All the best.
0 -
You have so much on your plate right now, and the waiting between appointments and results can feel endless. We can completely understand wanting a clear plan and just wanting to get moving already.
It also sounds like you’re trying to take care of everyone else while preparing for your own treatment and time away from work. That’s a lot for one person to carry.
We’re really glad you reached out here. We’re sure others who’ve been in this same in-between stage will relate. Sending support for Monday’s appointment. 💕
0 -
Just got a call from my oncologist. They had to postpone my appointment as all testing is not back yet. Now it's on Thursday. This waiting is very frustrating. So much anxiety preparing for this appointment and now have to wait another 3-4 days. UGH!
1 -
It's difficult to have to wait longer to discuss your treatment plan but you really need all the relevant information to do this. FISH testing for equivocal Her2 takes a long time because a limited number of labs do this. Even though the hospital where I was treated is one of them it took nearly two weeks for my result because of the backlog of tests. If the sample is HER2+ the plan will be very different (chemo is pretty much always needed and the type is specific to that marker.) Hang in there.
0
