One thing that has really bothered me throughout what will be a 2-month long diagnosis process is that we can’t find out if the cancer has spread to my lymph nodes until after surgery.
Lymph node involvement is important. It is one of the two critical factors in determining the stage of the breast cancer (the second critical factor being the size of the tumor). Stage, of course, is directly tied to prognosis. If the cancer cells have spread to your lymph nodes, it means an increased risk of the cancer returning after surgery and the need to use chemotherapy and/or radiation to ensure the cancer cells in the lymph system have been destroyed.
One of my Duke oncologists ventured to say there was a 25% chance that I have lymph involvement. That’s about the rate of lymph involvement overall in the study below. The oncologist made the 25% estimate during my August 10 visit, before my breast MRI. The MRI came back showing no suspicion in the lymph nodes, which is added to no suspicion in clinical exam, no suspicion on ultrasound and no suspicion on mammogram.
So, according to this (p.31 #1644) nifty little study (OK, of just n=209 patients), the chance of having positive lymph nodes is just 15%. That was the rate of lymph nodes testing positive even if clinical exam, mammogram, ultrasound and MRI were all negative (aka false negative).
My MRI-guided biopsy results from Duke are back and it confirms a secondary cancerous tumor. It is the same type as my primary tumor: invasive ductal carcinoma. This means that I will need to have a mastectomy. I am strongly considering a double mastectomy, even though there is no evidence of cancer in my left breast.
The secondary tumor is 0.4cm in diameter and is 4cm away from my main tumor (which is 2.4cm in diameter). Contextually, 4cm is a long distance. In fact, my initial surgicial consult at Wake Forest Baptist recommended a lumpectomy, which typically only requires 1-2mm of clean surgical margin to be considered successful. That means I could have had a lumpectomy and we could have NEVER found this tumor. I expressed this sentiment to the radiologist at Duke and he agreed that a lumpectomy could have missed this tumor entirely.
I am so grateful that I went to Duke for a second opinion and that they did these additional diagnostic tests. Yes, they have been stressful, but it was all worth it to know that I am making a better treatment decision.
And, at the initial consult, Wake Forest had indicated that if I have negative lymph nodes, then probably I would not need chemotherapy. That means an entire invasive tumor could have been left in my breast with absolutely no treatment. I guess what could have happened is that they found it later with monitoring scans and I would have had to go back in for a second surgery. Or they could have found it during the lumpectomy somehow and either done a mastectomy (without my expecting it), or I would have had to go back for a mastectomy.
Now, having secondary tumors does potentially impact my prognosis. I posted previously about some of these studies, of which some mention that this has a negative impact and others say it has no impact. I really want to discuss this with my doctors, since most studies have been retrospective reviews and often say that more study is needed.
My (Duke) surgeon is out until next week (Labor Day weekend and all). So I won’t get a chance to talk to him until next Tuesday, Sept. 2. More waiting. Maybe my genetic results will finally be back by then. I also want to talk again with the medical oncologist, and I would like to get referrals for an alternative medicine consult (just want to see what they have to say about potential complementary treatments), palliative care consult (pain management), and a physical therapy baseline evaluation (since I do have this little rotator cuff problem that won’t go away on the right arm). Oh, and maybe my genetic test results will be back next week, too! Surgery probably in mid-September, is my guess.
Still trying to get over the shock that I could have picked a treatment plan that had a high risk of missing an entire second tumor.
Probably sometime today or tomorrow, I will get the results of the biopsy of a potential secondary tumor in my right breast. If it is cancerous, I will need to have a mastectomy of that breast (i.e., lumpectomy will no longer even be an option). If it is not cancerous, it just means there are benign cellular changes there. And then there are at least three other tiny potential additional tumors that may or may not be cancerous (don’t know because we did not biopsy them) right next to my verified cancerous tumor, and there are also some cysts there.
So. In light of all of this, I am considering a double mastectomy. Here’s why:
- Case for mastectomy of right breast (where confirmed tumor is): Even if all these additional “suspicious lesions” are not cancerous, they certainly are not healthy and normal cells. There seem to be all kinds of contradicting research on whether benign breast diseases cause increased risk for recurrence or secondary primary cancer. I will go ahead and admit that this is not an entirely scientifically-based point, but I just don’t feel comfortable leaving anything behind that is not a normal and healthy cell.
- Risk of recurrence is significantly higher for young women (40 or younger) whose tumor size is 2cm or larger. Mine is 2.4cm.
- Case for prophylactic (aka preventative) mastectomy of left breast: Look, I am a left-winger. We all know that. But it doesn’t mean I need my left breast. Seriously, though. Nobody has talked to me about my risk for developing cancer in my left breast (which MRI-ed totally clear of any problems). So I looked up my risk and it seems to be worse than my risk of recurrence in the breast that already has cancer. I really need to talk to my doctors about this.
- “Younger age at first breast cancer was associated with a higher risk of contralateral breast cancer. For women who have their first breast cancer before the age of 40 years, the cumulative risk of contralateral breast cancer after 25 years was … 28.4% for patients from BRCA 1/2 negative families.” Click to read full study.
Waiting about two months for a final breast cancer diagnosis gives one time to plan more than anyone needs to plan. Hence, my desire for a power La-Z-Boy recliner.
An initial fact-finding mission indicated anywhere from a 3- to 8-week wait from order to delivery. Until we stumbled upon the Charlotte La-Z-Boy store. When we asked how long, we were told: “Anywhere from 3 to 8 weeks, unless you have a chair emergency.”
“We have a chair emergency,” my husband said.
And I think we made those folks’ night. They were SO happy to help us. And now this is in the back of the car, no doctor’s note or anything.
I am home from my bright and early MRI-guided breast biopsy at Duke. Wow, what an experience. It was like an MRI, a mammogram and a regular old ultrasound-guided biopsy — all wrapped into one. This procedure was to examine a small, additional “suspicious lesion” to see if it is also cancerous.
Just as in the breast MRI, you lie face-down on the MRI platform, and this time they had a nifty little pad in the head cradle, meaning you could not see anything. Then, they squish your breast between plates like in a mammogram. This came as a bit of a surprise; there is nothing like this in the plain old breast MRI. It was very uncomfortable, and stayed that way for the entire hour or so of the procedure. I actually found some bruising and welts on my chest afterward (I do have pretty sensitive skin).
Again, there is contrast injected through an IV. They do about 20 minutes of taking pictures, then they come in and insert basically a plastic placeholder needle into the spot where they think they are going to biopsy (honestly, I couldn’t see anything because I was face down, but that’s what they said they were doing). I asked if it was metal and they said it was plastic. Then they take more pictures to see if the placeholder is in the right spot. It was. So they came back in and did the biopsy. I requested “extra” lidocaine for the entire procedure ahead of time, saying that my past two ultrasound-guided biopsies had actually been quite painful. Well, they didn’t hold back the pain med injections today, because after the sting of the pain med needles, I felt almost nothing. I did feel the slight deep pressure and internal tug when they actually took the biopsy, but that’s it. So yay, extra lidocaine. Here I had assured them that I am such a wimp that I would be crying by the end, since I had cried at the end of my other two biopsies. But I did not cry at all.
Before the procedure, I also asked if I could quick take a photo of the MRI room. They said I couldn’t go IN to take a picture because the MRI magnet is always on. I promised to stay outside the door, so voila:
I asked about five people today for a copy of my initial MRI report (the report on the MRI that got me here in the first place, that identified numerous other “suspicious lesions”). Nobody could give me a copy, which was pretty disappointing. The radiologist who wrote the report told me more about it, though, including that the lesion that we biopsied today is:
- About 4 cm away from the main tumor
- Is about 0.4cm in size
- Would not show up on ultrasound because it is so small
- Is probably not a cyst because of how it looks, especially its irregular edges (which makes it quite suspicious)
- If it is cancerous, then I likely will not be a candidate for lumpectomy and they would want to do a mastectomy
When to expect results: Tuesday or probably Wednesday. (This is a full day later than when the surgeon’s office said to expect results.) Oh well. I shall wait, because I have no other choice.
With today’s addition, I now have three miniscule metal markers in my right breast. Add those to the screws in both of my knees from ACL surgeries and maybe soon I can start causing problems at metal detectors. In other fun news, I feel remarkably better after this biopsy than I did after the other two, despite the uncomfortable procedure conditions and the hour and half ride back home from Duke. I’m going to give some props to Duke for my lack of pain during and after the procedure.
Now, about that MRI report …
Just got some more details on my breast MRI results (still haven’t gotten my hands on the actual report). So, my tumor is in my right breast. My question was:
Was anything seen in the left breast? Answer: No. Everything looks good on the left side!
What could they tell about the lymph nodes on the right side (the side with the tumor)? Answer: Nothing suspicious.
The lymph info is reassuring, because lymph node involvement (which is finalized after surgery) is one of the main factors in determining the stage of breast cancer. And stage, my friends, is heavily linked to prognosis. I will likely be either Stage IIa or Stage IIb. My tumor is at least 2cm, so that puts me in the Stage II arena.
There are three suspicious “lesions” adjacent to my tumor, and a fourth suspicious lesion that that is a couple centimeters away. Continue reading
I broke down and called again. The nurse gave me a somewhat scary summary that included a mention of 7cm! Holy s*!t.
Wait. Then the radiologist (I kid you not, his name is Dr. Grimm) kindly called me personally to schedule the follow up: an MRI-guided biopsy. And discussed my MRI report with me, which I begged him to upload to my patient portal and he promised to try but the system has a schedule of its own, usually.
- There is an area of suspicion spanning 7cm x 3.5cm x 4.2cm (these measurements are HUGE in the context of breast cancer)
- My main tumor continues to appear slightly larger than 2cm
- There are a lot of “suspicious lesions” immediately adjacent to the main tumor; all are less than 0.5cm
- There is a distant “suspicious lesion” that is smaller than 0.5 cm and (I think he said) about 2 cm away from the main one. This is the one they want to biopsy
- Nobody said ANYTHING about my left breast, so am hoping that means they found nothing there
- Other good news: Dr. Grimm said NOTHING comes close to my chest wall (this is something I had been worrying about since the lump is pretty far back in my breast)
BEFORE YOU FREAK OUT (it’s OK, I freaked out, too!): Continue reading
I carry my phone with me when I go to the bathroom.
I prefer to set it on the back of the tank.
This is because I figure that when the doctors do finally get around to calling me with my MRI results, it’s not like I can just call them right back. I envision myself trying to call them back and hearing the nurse say they will be in surgery for the rest of the day or meetings the rest of the day. And I will have missed my chance to get the results for probably the remainder of the day.
Basically, everywhere I go, I think: How can I manage this situation in case the doctor calls with my results?
In other news, the genetic counselor from Wake Forest Baptist called today with a heads up that my genetic panel results will be at least 10 days later than we had hoped for. My blood was drawn July 30, and received by Myriad July 31. But they didn’t start processing it until August 11 and it will be at least 21 days until the results are available, and maybe even longer. That means that I won’t know anything until the first week of September at the earliest. The genetic counselor reminded me that I can choose a surgical approach without the genetic results, and sometimes they don’t matter if I’ve already made up my mind on, say, double mastectomy. But I haven’t made up my mind. I would like to do a lumpectomy unless I get some indication to do otherwise. Yet all this waiting makes me uncomfortable, since we don’t find out until surgery whether the cancer has spread to my lymph nodes and thus greatly impacts my prognosis.
(About Confessions: These will be occasional installments throughout my cancer treatment, highlighting the funny and bizarre. I caught myself saying, “I have a confession …” and then the chorus from the Usher song jumped in my head.)
“The waiting is the hardest part
Every day you see one more card
You take it on faith, you take it to the heart
The waiting is the hardest part”
Just called to see if my MRI results will, in fact, be available today. I was told last week that if my MRI was Friday evening (which it was), then the surgeon would read the results on Monday (today).
The nurse who answered the phone said that my surgeon has been in surgery all day today and is not finished yet. She said that the final MRI report has not been entered into the system yet, so there isn’t even anything for the surgeon to see. She said depending on the surgeon’s schedule and when the report is loaded into the system, it could be Tuesday before anyone calls me. I asked if there is anything I can do to help ensure that radiology loads the report in a timely fashion, and the nurse said no. So I said thank you so much for the update and that I look forward to hearing from them.
Here I thought I had been super patient to wait until after lunchtime today to even call and pester them. Now I may not know anything until tomorrow. Of course, I am mentally prepared to need to go in for some kind of follow-up based on something new they see on the MRI that will need an ultrasound and maybe even a biopsy. Which means a trip back to Durham sometime this week. Back here in Winston-Salem, I’m waiting for my genetic results to come back, possibly as early as Wednesday this week or as late as Tuesday next week. I actually have an appointment at Wake Forest Baptist on Wednesday to go in and discuss the genetic results, in hopes that they are available. Given how slow things are in Cancer Diagnosis Land, it seems unlikely I will have those results Wednesday.
Meanwhile, Continue reading