Anyone want to sit and wait with me?

JaBoo

That's so weird, I have a small lump on my forehead too. So with my recent diagnosis, I finally took it more seriously, saw a dermatologist and she thought she saw a basal cell carcinoma there. Saw another dermatologist and he said he was 99 % sure there was no carcinoma there, but they still did a biopsy. Now the lump is twice the size, and hurts, which I hope is swelling. I feel I look like Frankenstein lol

Fingers crossed for my PET-CT scan this week. The most important test, and they did it last....

Hi there.  I had my annual screening this past Monday and a doctor from the hospital called me on Tuesday morning saying they found something and wanted to have a closer look.  She asked if I could come in immediately so I was there within the hour.  They did another 3D mammogram and had the radiologist look at it, then they said I needed a bilateral ultrasound.  I got that and the tech said she would go have the radiologist review it and if all was good she would come tell me I could leave.  Nope, she came back and said the radiologist needed to speak with me.  So off to the consultation room I went.  The radiologist said that she was sorry and that I have breast cancer at 12 o'clock, something that looked benign, but was a little suspicious at 7-8 and two thickened axillary nodes.  She said it was going to be a long year ahead, but they would get me through it.  So, I have cancer?  I was shocked. She said she needed to do 3 biopsies and that she would stay late after her last appointment and do the biopsies, which she did.  Apparently, she talked to my doctor as well...is that normal?  I already have a breast cancer team at MD Anderson on standby if the results are confirmed.  I am suppose to have results tomorrow.  Are radiologists pretty accurate?  She seemed to believe I had cancer.  I am so nervous.

fsaucedo18---Welcome. I am sorry you find yourself here but the support and wisdom on these boards is awesome. In my opinion the radiologists are pretty accurate at identifying suspicious lumps. But the definitive test will be a biopsy of the lump and lymph nodes. Good luck. Let us know how it goes. You really can't do better than M.D. Anderson so you know you will be getting world-class care.

InnaB- I'm glad you're starting to feel a bit better. I'm still fighting to at least get a cursory second opinion, otherwise I need to get one from the U.S. which is a lot of hassle. But these Ontario cancer centers don't play around: once you are "lucky" enough to get into one, the attitude from the other centers is that you should realize how lucky you are, not bother them because they have their own patients to attend to, and just be a good patient at your own center. It's a very rigid, non-patient-centered system, that because of my decades of living in the U.S. I have trouble adapting to. If you live in a small town, like I do, you are stuck with your regional cancer center and that is that, you have very little chance of being seen or getting a second opinion at one of the larger centers in Toronto.

I have my PET-CT scan on Tuesday. I am so afraid, not of the test, but the results. But better to know.

I had the biopsy on my forehead for that lump last Monday and for some reason the soreness from the biopsy site makes my whole head ache so it has not been a good week I will be starting Ibrance soon. So I am glum.

InnaB - no I don't have the biopsy results from my forehead yet, they said 2 weeks, I had it on Sept 17th

I had 33 radiation treatments. No issues except a bit of burning and fatigue halfway through. Hope your treatments go well too. I was 7 years out last month.

Utopria- so sorry you are dealing with the beast again. My sister had a local recurrence 4 years out. She’s had radiation and gets shots every month. She’s allergic to chemo. Hope the biopsy shows nothing serious. I am sure you are anxious. Completely understandable. We are waiting with you and praying for a good result.

Keep us posted and keep the faith.

Diane

Hi waiting friends, I disappeared a bit into my first round of AC followed by a sinus infection that scared me to death due to the risk of febrile neutropenia. I am back on the up now and trying to follow up on an online second opinion in the states. The gears are moving very slowly.

Fritz, fsaucedo and Utopria, so sorry you are here with us. Hoping for the best news for both of you. I've found this such a wonderful supportive place to wait, hope you can gain some strength and comfort here.

Amica - thinking of you and your PET/CT today. Do you know when you'll get the results? Do keep us posted and let us know if you've had any movement with a second opinion at all.

Jaboo - sorry you are waiting again, too, and in pain! But v happy to hear your good news. It reminds me to push my MO again about genetic testing.

Amica - I cannot believe how difficult they make it to get a second opinion in Canada. Question though: if you do get a second opinion, and they recommend a different treatment plan, will the Canadian health system be open to implementing it? Or will they just say, no, we think this and so that's what you get?

Inna - congrats on finishing chemo, that is the best feeling. Good luck with rads.

I'm scheduled for my second opinion on rads at MD Anderson on Monday. I fly out Sunday and come back Monday evening.

No, I had no luck whatsoever getting a second opinion or a transfer from 2 hospitals in Ontario, and my oncologist and family doctor said they will not send any more requests for second opinions at all. Both requests were turned down because I live outside of the Toronto area.

beeline: So I too am looking at getting an on-line second opinion from the U.S., but there is so much they want, my records are scattered at different hospitals in different cities, so I will start on the Ibrance/Letrozole regime, and spend the next month or so working on getting the slides, images, and paperwork that Cleveland Clinic requires. IF I have the energy. Ibrance is supposed to cause fatigue and I'm already extremely fatigued

My oncologist wrote an extremely dismissive rude comment about me in her Clinical Notes. I see her tomorrow, and have been obsessing about how to address it with her. I would really like to go over her head and address it with the division chief and ask him how this kind of thing can be allowed.. You have patients fighting for their lives.. They shouldn't be being disparaged by the very oncologist who is supposed to be providing care for them. I should probably ask if I could be assigned a different oncologist at that center, I don't think you get to pick one though, and am afraid I'll get one who is even worse.

Any normal cancer center would let a patient know their PET-CT results ASAP but I am dealing with a bunch of jerks and apparently they are quite content to just let me wait until my doctor has them. Even worse, they WILL NOT SHOW YOU the actual report, even if the doctor is holding it in her hands a few feet away. You have to go to patient records and pay $30 for it. I hate this hospital so much I cannot even express it.

Amica, that's so terrible, I am at loss for words! And I thought our health care system is difficult with the state insurance and such. At least I get a record of each appiontment handed to me automatically. But my 2nd opinion I am going to get next week is by no means official. I have contacted the MO specialist (specializes in patients under 40) by myself, outside of his office hours, without my MO knowing (I will tell her now, I like my MO). But I am able to do this because I have complete records with me. I am so sorry they make such fuss about patients records in Canada! That's so sick

JaBoo

It's especially concerning that my hospital won't share patient records with the patient considering that I found a mistake on my pathology report. Only way I found it was because my family doctor was kind enough to give me a copy of my pathology report.

First I was PR negative, then it said PR positive. I actually called the pathologist and asked, "Oh, did my PR status actually change?", and he apologized and said it was an error, and he would correct it back to negative. But of course what bothers me is that I was the one who found the mistake, it makes me wonder how carefully anyone is keeping track of my case.

Amica and Jaboo, what a nightmare! I honestly can't believe you're being refused your own records. I am worried about getting specimens and samples for my second opinion, but mostly because I think it will be a pain. Anytime I ask for a copy of a report at an appointment it is printed off and handed to me. I'm so sorry you're both dealing with/have dealt with that.

Re: mistakes on pathology - my surgeon told me there was a typo in the "N" staging on my surgical path report, that it shouldn't have been N3 so I spent ages worrying that there had been some mistake and trying to understand how I was 3C. Now I think she was just wrong. Not that it matters as she seems to have dumped me. My 6 month follow up is with a different doctor for some reason. But I could see when she gave me my surgical path results that she was done with me or felt she could do nothing else for me -- after telling me I was Stage 1A and would only need surgery....

hapa- this is completely coincidence but I am also going to MDAnderson for a second opinion Monday morning! Wow! Small world. I’m scheduled to start AC 10/9 which I suspected. But I also wanted an outside source to “confirm” everything. I also had a question about whether I would need radiation after. My MO said no because there was no extravapsular something. But I’m just not sure.

I’ve never been there before but heard it was great!

In the US, HIPAA guarantees your right to see your medical record.

Best of luck to everyone getting follow-ups and second opinions.