Post mastectomy pathology: Waiting is tortuous
Good morning all,
This past Wednesday I had a mastectomy with reconstruction and two lymph nodes removed and so far recovery is not as bad as I had imagined it to be.
I spoke with the nurse yesterday and she mentioned that first round of pathology is done by the hospital which will show size and grade and pathology on other lymph nodes they biopsied during surgery which will be done by May 9th. Following that appointment they will then decide on whether to send samples out for Oncotype which takes three weeks.
Is that normal protocol? Why not do it in parallel? Should I push for that?
April 19-May 9 first pathology
May 9-May 30 Oncotype testing
The waiting game is torturous! It took two and half months from diagnosis to surgery and now another 5 weeks until they decide on what’s next in my treatment plan?
Interested in more discussions like this? Go to the Breast Cancer Support Group.
My understanding is that the Oncotype test requires the actual biopsy tissue so your oncologist must release the tissue to them. I’d guess they do not want to release the tissue until they were sure they had completed their own testing. Also, I think Oncotype is used only on certain types of breast cancer so they may need to complete the pathology testing before being able to determine if Oncotype is appropriate. This link explains it well
As far as the timing on getting the completed pathology report, my experience is that the doctor must view and sign off on the pathology report before they share it with the patient. So the actual pathology may be done that first week, it may take a week for the doctor(s) to view it, then they want to have time with you to explain it – so an appointment is scheduled. All takes so much time.
If they’re world, they may not be in any hurry as they would not be doing any procedure on you for 4-12 weeks as the surgical site needs to heal.
We reviewed my local biopsy pathology report using a video telehealth visit per my request. I think the video visit was easier for them to schedule. But I’m pretty sure they would not have done it if the results were imminently life threatening.
My own story, if it helps to hear other stories. My regular annual mammogram was at the end of April, 3D mammogram was a week later. This was done at a local facility, not MD Anderson. The local radiologist thought the spot looked like a lymph node and recommended coming back in 6 months. My family practice doctor suggested I follow up anyway with a breast specialist – and they went ahead and did a core needle biopsy on June 10. It was intermediate grade DCIS. I was told the basic results over the phone 4 days later, but the pathology report was not released for me to view until I “saw” my doctor on June 16.
I contacted MD Anderson, 3 hours from here, and had a mammogram and MRI on June 29. I had a lumpectomy and ocnoplastic reconstruction on August 30. I think that the pathology report was shared with me on Sept 12. They had already planned on radiation. And I’m guessing that if the new pathology report showed something unexpected they would have changed my treatment. I started radiation on October 17. In retrospect, I’m glad there was a 6 week wait for radiation, although at the time it seemed like I just wanted to get everything over with. It actually took almost 3 months for the sutures to fully be absorbed and healed.
At the time of my treatment, the Oncotype test had not been verified for DCIS, although I think it is now. I did have the genetic test for BRCA based on family cancer history.
I’m not sure if I’ve been helpful. Wishing you the best!
Hi @lesleyjt, Glad you came through the mastectomy with flying colors! So different for everyone. I agree that the waiting game is the worst!!! I think we can all agree on that. I also had about a 3 month delay before surgery with a mammogram, ultrasound, a visit, a biospy, MRI, another biospy, CT/PET, radiation consult, cosmetic surgeon consult, visits to more specialists, etc. I finally told my breast surgeon that I felt like Bill Murray in Groundhog Day! Every day I wake up and it's the same day all over again. Truly! 🙂
Side story: after my suspicious ultrasound findings, I had to wait 4 weeks for the best radiologist to get back from vacation to do a difficult biopsy (nurse told me she doesn't miss). Finally, it was the morning of the biopsy, I was so relieved, and then my mother called in a panic due to severe abdominal pain and thought she was dying. No, not today of all days! I called 911 for her and rushed over to be with her. It was a kidney stone. I was the only one that could stay with her and I hadn't told her or anyone about my biospy and likely breast cancer so I had to cancel the biopsy two hours before the procedure. Luckily they didn't charge me, but I had to wait two more weeks (!) to get on the schedule! The good news is, that radiologist didn't miss! 🙂
Oncotype is for those with ER+ and HER2- cancers, so they have to wait for those results in pathology I believe.
I had biopsy results with the profile required for ONCOTYPE. My biopsy samples were sent in for ONCOTYPE before my unilateral mastectomy… to determine if chemo was needed prior to surgery . As my results ( took 2.5 weeks) were favorable to NO BENEFIT for chemo I proceeded with surgery . I was MRI diagnosed January 4 2022 after A “ normal” 3D mammo and ultrasound on October 29 2021, 3 mos prior . But I persisted!
From diagnosis to surgery was 5 weeks. I am grateful to live near availability in medical care.
That said, I think there is a tremendous backlog almost everywhere now as women ( and men) put off mammos and other preventative care during the pandemic. And we lost healthcare professionals. This has definitely affected timelines.
Stay fierce in self advocacy! Blessings on your journey. 🌸
@anjalima My biopsy and post-surgery results were different: the biopsy ones were wrong! But the Oncotype was the same for both, which was reassuring in terms of accuracy. It seems more docs are doing Oncotype after surgery, at least among the few friends I have dealing with this.
Thank you. I researched this out of concern but was reassured.
I just did the Signatera blood draw two weeks ago so another step forward for science ( hopefully).
From my experience and what I was told is as follows: I would say your time and sequence of diagnostics, surgery, etc., is about right however, my pathology "answers" came back more quickly than yours. It was still 3 months prior to knowing my continued plan of care. Most treatments require you to heal from surgery. The information your oncologist needs to decide if an OncoDx Type test is necessary comes from the surgical pathology results and any prior biopsies. It is important to see if the surgical pathology is consistent with the biopsy results as there may be different cancer (highly unlikely). The lymph node results are of course important because if they are positive, a lymph node dissection surgery may follow and then they may discuss radiation. So many "ifs" and yes, waiting. I'm sorry you feel so frustrated and anxious. If it makes you feel any better, I experienced the same worries and frustrations not knowing.