New here with many questions

Debsauga

I live in Mississauga and was referred to the DAP at CVH/Trillium - I'm with Dr Kumar. I have met her twice and recommended a Lump+Rad for DCIS. My PCP says shes a very good surgeon and her profile says her focus is breast surgeries/ breast cancer.

I prepared a bunch of questions and spoke with the nurse navigator but she couldn't answer my questions and she told me that they would only refer me to a Radiation Oncologist after my pathology results from the Lumpy or Masty are available. How am I supposed to make a decision to do Lumpy+Radiation if I don't fully understand the ramifications of radiation. I mean the nurse told me that the surgeon is not concerned about radiation as that is not her specialty. She also said they only did immediate reconstruction and that I have to arrange a PS on my own if I decided on a delayed reconstruction. The nurse seemed uncomfortable with all my questions.

I had a Total Thyrodectomy in 2013 at Trillium and had major complications from it - surgeon cut my vocal chord. It wasn't until after the surgery that it occurred to me that my ENT surgeon may not have had prior experience removing such a massive multi-nodular tumor. Later I found out that my TT was a complex procedure and the woman was celebrating her "success". I mean she took pictures and sent them to me...who does that? So I'm not very trusting of surgeons.

I have a couple of questions

- for those of you that did radiation, when did you get the RO consult? Is there anyway to talk to someone in Radiology before making a decision? Honestly, I'd rather avoid radiation completely, its my left breast and Id rather not radiate my heart.

- will OHIP cover a Mastectomy if I already had a Lumpectomy. I'm thinking a lumpectomy first and if the pathology finds unclear margins or invasive cancer, then I'd just do a Mastectomy.

- how easy is it to get a second opinion and how do I go about it?

- anyone had reconstruction at CVH or Trillium?

Ingerp

I'm in the US so procedures might be slightly different. I had an initial consult with my RO before my surgery in 2016. I had to officially become her patient before starting treatment with her. Hearing it would cut the probability of recurrence in half made it an easy decision for me. That time was my left breast and I truly believe anything you hear about possible heart involvement is from before the equipment got so sophisticated. She looked me in the eye <twice> and said, "I will not irradiate your heart." That said, I did to the deep-inspiration-breath-hold, and it wasn't a big deal at all. I also never considered any kind of reconstruction, and the left side was a pretty big chunk (right side last year was much smaller). You can't tell when I'm wearing clothes, and I'm used to it by now and honestly don't think about it. I mean, we're all lopsided to begin with, right? Re: second opinions, I never considered getting one. I knew what the recommended treatment for my diagnosis was, I wasn't at all surprised, so unless you don't trust your medical team, I don't see the point for standard, early-stage diagnoses.

moth

I'm in BC so things are probably similar. You can get 2nd opinions but everyone is following the same provincial cancer agency evidence based guidelines. Anything that is going to veer off the guidelines ends up being run by the entire comittee. In BC there is a weekly conference call for oncologists from across the province where they discuss difficult cases - I know mine was discussed due to the weird hormone results for mine. I liked my surgeon and mo and ro. The nurses were less informative than the doctors themselves. I once called the radiologist's office to clarify something in my treatment plan and ask about doing extra rads because of the location of my tumor and the RO herself called me back a couple hours later and spent about 15 mins on the phone explaining why she did not think that was a good plan.

I didn't talk to radiology till waaaaaaay after my lumpectomy. Like surgery was in Dec 2017 and I think I had my rads consult in May 2018. Mine was on the left as well and they arrange the radiation to avoid hitting the chest and I did the breath inhalation and hold technique. I wouldn't do a mastectomy just to avoid that. PLUS you need to know that even if you have a mastectomy, if there are cells in the lymph nodes they would recommend rads anyway so a mastectomy is no guarantee of avoiding rads.

My surgeon told me that a mastectomy was an option but was not his first choice or recommendation and even if I'd not had clear margins, I think I would have done a lumpectomy again. It's a much less invasive and less risky surgery and in my case, research indicates long term outcomes are the same.

Beesie

Deb,

I'm in Toronto, but just on the edge of Mississauga. When I was diagnosed 13 years ago, I was referred to Trillium Mississauga but wanted a second opinion, and requested one from Princess Margaret Hospital downtown. I'm not sure if that option is available to you because PMH is in Toronto and you are in Mississauga. So I don't know if these days you would be able to get into PMH for a second opinion. The problem is that they are so much in demand that they have to limit their referrals and I know in another case that they refused a second opinion referral for someone who was from outside of metro Toronto.

In my case, I wanted a second opinion because:

- My surgeon was recommending a MX because the extensiveness of my DCIS and I didn't want the MX and wanted to know if a lumpectomy was an option.

- Because I had a microinvasion of IDC (found in the excisional biopsy pathology), I had to have my nodes checked. Sentinel node biopsies were a new procedure in those days and Trillium was not going to be able to perform one on me. I knew that I wanted the fewest number of nodes removed and wanted the SNB.

- If I was to have a MX, I wanted immediate reconstruction and I wanted a PS who specializes in breast reconstruction, not a more generalized PS. The PS I was referred to at Trillium was their head of PS but he did not specialize in breast reconstruction.

So I went for the second opinion at PMH.

- Before the appointment, the surgeon at PMH had their pathology department review my biopsy slides, which confirmed my diagnosis with no changes. He also ordered an MRI, which had not be offered by Trillium. The MRI showed that a lot of DCIS remained in my breast, confirming the need for a MX. Despite that, the surgeon said that he could attempt a lumpectomy first to see if he could achieve clear margins, but the MRI results had me reluctantly accepting that a MX was the right choice.

- The surgeon agreed that my diagnosis was suitable for an SNB and said that he would be able to perform one, rather than remove the whole first level of nodes, as the surgeon at Trillium was going to do.

- The surgeon offered to refer me to the breast reconstruction plastic surgeon at Toronto General (PHM and TGH are both part of The University Health Network and their surgeons work together) and agreed that my diagnosis was suitable for immediate reconstruction.

So with all that, I made the decision to stay at PMH rather than have my surgery at Trillium.

As I said, I don't know if Toronto Hospitals accept 2nd opinion referrals from Mississauga these days but you can try. You would need to have a doctor refer you - in my case, my first surgeon was actually happy to make the referral but I would think even your GP could make the referral. PMH is great, as is Sunnybrook. You could also try Mt. Sinai since many of the PMH doctors work at both hospitals (they are right next door to each other). Or Women's College.

To your question, yes, OHIP would cover a MX after a lumpectomy.

As for reconstruction, unfortunately wait times for breast reconstruction specialists in Ontario are very long, as in one or two years. And if you don't have reconstruction done at the time of your MX surgery, then yes, it is in your own hands to find a PS. At that point the surgery is not part of your active treatment for breast cancer and is not considered urgent. But if you are having reconstruction done (or started, anyway, since it's usually a long process with at least a couple of operations) at the time of your MX, then you can get into one of these breast reconstruction specialists immediately - which is why the wait time is so long for everyone else.

Hope that helps.

Debsauga

Thanks for the support and responses.

Ingerp - what you said about getting a second opinion this early in the process makes sense. I think trust comes with time and hopefully I'll feel more confident after today's appointment.

Moth - Thanks for this, you have set my mind at ease somewhat and will adjust my expectations. I'll ask about the breath and hold technique.

Bessie - Yeah I'm thinking getting into the Toronto Hospitals may be difficult if not impossible. I will try through my GP if a mastectomy becomes an option.

I feel better after reading your responses, thanks so much for sharing your experiences. I'll update this post after my meeting with the surgeon.

Debsauga

Hello again,

I'm back with an update after my meeting with the Surgeon and glad to say it went well. She answered all of my questions and I feel more confident about the Lump. Basically, she is doing a wedge excision with wire localization prior to surgery. She said no node removal and that surgery time should be between 60-90 minutes. Earliest date available is in June so I took it.

She agreed to send me for a RO consult before the surgery but she couldn't guarantee any availability. Surprisingly I got an appointment with the RO booked for next week so I'll ask all my questions to him.

Thanks again for sharing your experiences.