Nothing going on here

zayb

Nothing going on here. I had all my medical records and pathology slides sent out for review and my appointment is early next week. I am really hoping that they have some kind of explanation. I spoke with my cousin a few times. She had a mastectomy for dcis a year or so after I had mine. She is also a nurse practitioner. She agreed that she would need more conclusive results, not just the fna when the excisional biopsy/lymph node dissection was completely free of cancer. It is like a riddle I play around with in my head. I did notice that looking around here that people often don't get a full pathology report from a fna - makes my experience seem even odder.

I am getting more anxious as the appointment approaches. However, since I went ahead with the other thing that was causing me anxiety and it was successful, summer has been more normal. Amusement parks, hiking, going to the shore before school starts. Got tons done on a project I have to complete by the end of September. Have only taken Xanax 3 times in the last 3 weeks when I feel like I am going to start picking/poking. The area where I could barely feel something is really smooth, even though by the time I had surgery it wasn't palpable any more anyway. I have two incisions under my arm, one smaller than the other. Of course, they are healing since it has been almost 4 weeks. I had a dream the pathologist called me, even though they never talk to the people/patients, because he was sympathetic with the confusion this has caused!

vlnrph

What a nice pathologist even if it was only a dream!

Good job on the non-picking too, sounds like appropriate use of Xanax. How great to have an NP in the family (although not so good to be plagued with similar diagnoses): it sure can help to talk with someone who has been through a similar situation. Happy to hear your summer is winding up well in terms of activities.

zayb

I had my appointment today. A relief overall because the oncologist agreed that a more definitive diagnosis (whatever it may be) is called for. So, their pathologist (at University of Pennsylvania) agreed that there was no cancer in the excisional biopsy/lymph node dissection, which they reviewed two weeks ago. The hospital where I had the excisional biopsy and the FNA only sent the pathology from the excisional biopsy; they did not send the slides from the FNA (of course, I think this is suspicious). Oncologist said these slides were requested, and they are waiting for them.......

I had a physical exam, no palpable lymph nodes at all. I am having an ultrasound there next week to see if there is still an abnormality evident in the area or whether the surgery I had removed it. What comes next will depend on the ultrasound results. I am comfortable with this. Since the abnormality was seen on ultrasound, it makes sense to check if it is still there. He may recommend anti-hormonals regardless of the results. He also said a recurrence to the lymph nodes without a simultaneous local recurrence is very rare after DCIS.

zayb

Scheduled for an ultrasound in the morning. I am ready. In my fantasy land of post-diagnosis reality (I had invasive triple negative over 6 years ago and then dcis in the other breast), all this follow-up b---s--- takes place in a way that does not demand so much of my attention and energy. Guess what, I am not an oncologist or a surgeon or an M.D. I may be a Ph.D. and wouldn't it be nice if I could actually think about what I am really interested in, devote my time to what is really important to me, and not be so busy with doing my due diligence in things that don't really interest me at all. I would be happy if I never had to think of cancer and could just leave it to the "experts."

So, my ultrasound is scheduled tomorrow. But, what I have scheduled for myself is audible book and a sleep mask. So, when some people are going to be ultrasounding me, I will be listening to James Patterson's Run For Your Life, which begins with the words, "Fight the Power," and wearing my sleep mask (so I can't see anything). I am hoping they will let me do this. After every event (triple negative in 2009 and dcis in 2010), I had my pathology reviewed at Penn and saw the oncologist there. I saw the same oncologist on September 8 after this most recent incident. One thing that was especially notable in my last visit was the oncologist's (at Penn) recognition that I am a human being who has interests beyond cancer. He asked me about my schedule, what days I am available. He asked me whether I was willing to have another ultrasound. He asked me what I would be comfortable with if the ultrasound showed no abnormalities. Given that my FNA biopsy showed cancer, but that the excisional biopsy was negative when the enlarged lymph node was removed, I think he understood the need (especially for me) to connect a particular result to me as a concrete person. He gave me a thorough physical exam and could feel no lymph nodes. But, the point is he asked me, he just didn't draw conclusions or order tests. He even listened to how I had a rash 3 days before I felt what was a slightly enlarged node. He even listened when I told him that the node became less palpable over time. Everyone else told me this was insignificant. Of course, the original place didn't release all the pathology slides for review, only the ones that were negative for cancer, so I have no idea what the pathology review would conclude.

I am sure there is a lesson in here somewhere, whatever the results happen to be... it has been two months now! Shortly after I was diagnosed with triple negative breast cancer in 2009, I thought I could tolerate almost anything if I didn't have to read anything online about tnbc. The internet is full of all kinds of information, much of it inaccurate and misleading. But, there is another side. Sometimes mistakes are made. I am not sure whether this has happened in my case, but it happens far more often than I ever imagined if google is correct. Lots of other thoughts on this, but got to get to sleep so I can wake up to listen to my James Paterson audible book..

zayb

Well, the node is still there. I guess it is a good thing that nearby nodes were cancer free. The radiologist said other than being enlarged, it didn't look that abnormal. Said it had a normal pattern of vascularity, wasn't oddly shaped. She thought they would do another FNA before removing it. But, I saw the oncologist and have surgical consult scheduled for Tuesday. He said the surgery will be the worst part of it (the treatment), and that they will remove all the nodes in the area. I will have to be admitted and stay overnight. The whole thing is very weird. The node is still not palpable. I did some googling and am wondering if this sounds more like ilc than idc?

bevin

Zaybe- hoping all is clear when they do the biopsy. Sorry you have to stay over night but its good they're watching you carefully.

zayb

I think the assumption at this point is that both biopsies were accurate. The FNA showed low grade highly er+ (90%) her2- cancer. Found out yesterday the pathology also said PR+ but not sure of the percentage.

The excisional biopsy missed the big node, but it did remove a grossly enlarged node in the same area. This is the node I was feeling, I think, and probably was from the infection/rash. No cancer in any of the four nodes or surrounding tissue that were removed. This is good.

Now, I think it was just a fluke that the enlarged node was found since it is not palpable. It is hard for me to understand where it is because it is immediately evident on ultrasound right at the dpedge but still can't be felt. They said yesterday it is in the axilla right on the edge where my body curves around. I can't imagine how long it would have taken to feel it.

I have to be admitted because it is going to be more complicated surgery, partly because I just had surgery there, and also because they are going to remove lots of lymph nodes. I guess whatever lymph nodes they can find.

bevin

I am sorry, I missed the part where they biopsied the node w FNA and it was biopsied. Praying the surgery allows you to heal quickly and isn't too difficutl a recovery. Keep us posted.

zayb

I have surgery scheduled on October 7 to revise my mastectomy and remove all the nodes, right side. The enlarged node is a level 1, just slightly below/lower the four other nodes that were removed. These four nodes and all surrounding tissue were noncancerous, although one of the noncancerous nodes was grossly enlarged. The enlarged node is long and narrow/flat-ish (but they said it looks like a single node/thing) and cannot be felt by anyone, and many doctors have tried to find it by palpation in the last week. But still it is right there on ultrasound. The pathology is her2negative, er+ 90%, PR+10% from the FNA biopsy I had done at the other hospital. They said that it was better to have it removed than just treat with radiation (what the other hospital was going to do). I don't think I ever felt this large node. It was the other noncancerous node that was palpable and was removed. I think it was just an accident that this one was found in the process.

voraciousreader

zayb....I wish you well with your treatment....With Breast Cancer Awareness Month just a few days ahead, you could be the poster child for the need for better ways of screening....My mammogram did not pick up my cancer, not did it pick up my cousin's!

I'm sorry that you have been having a rough go. Seems though that you are dogged and are working with a good team.....👍

zayb

Finally had my second surgery. In both surgeries, a total of 21 lymph nodes removed. Cancer was found only in the original suspicious node, all other nodes were cancer free. I had a lot of residual breast tissue left from original mastectomy 5+ years ago. All that tissue was removed and was cancer free. Will follow up with the onc in the next few weeks for the details ad treatment plan.