Anyone want to sit and wait with me?

ColleenS80

Hey ladies,

Thanks for inquiring about the dentist-I appreciate your concern! I had an apicoectomy-which is just as fun as it sounds haha. Apparently there was infection that ate a hole in my bone trying to get out. They had to remove a bunch of fibrous tissue and put in fake bone for it to heal around. So today I look like a chipmunk. But, just thankful there was a reason besides cancer!

JaBoo, my nodes were found pretty quickly. The radiologist that did my first mammo/ultrasound gave me false hope bc he reported my nodes did not look suspicious. Everyone kept saying “at least your nodes look good.” Then when I went for my biopsy, that dr said right away he was also gonna biopsy my nodes bc they did look suspicious. Sure enough-two had cancer.

Amica, so glad for your clear MRI!! Just sorry you are having such trouble with the doctors. No one understands how we feel. It’s so hard to be in the care of people who don’t know the hell of living with this mess.

ksusan

Great news, Colleen!

Amica

Ouch Colleen! that sounds painful but I am so glad you got it taken care of, and that it was not mets. Whew.

Thanks all for your support on the MRI. Now all that's left is the PET-CT, which I haven't heard yet when it is scheduled.

Unfortunately I'm having some side effects from the Letrozole, and today they wanted to take me off it. I was like noooo, I just started! So I begged to stay on it, and see if the side effects abate. I don't want to fail a treatment after only 12 days It's the only thing fighting the cancer right now.

rachelcarter35

Good news Amica.

beeline

Colleen and Amica, so happy to hear your good news!

Amica

In the past I have often used a gratefulness journal, I was going to start a gratefulness thread on these boards but noticed there was already one on here. It's at the following link

gratefulness thread

Dani444

Colleen, I second the comment from Amica-ouch! So glad it was “easily” treated! I just got back a little bit ago from my second biopsy. I am currently in a grumpy/ poor me mood. They took 8 samples from the area directly behind my nipple. The areas behind the mass didn’t light up this time. I guess they said it could have been inflamed breast tissue from my cycle. So I am going to be the grumpy pants in the waiting room I guess:) I really just hope this gives me a definite treatment plan for surgery. I am just plain tired of trying to decide between lumpectomy and mastectomy

InnaB2018

Dani, here were my reasons for bilateral mastectomy: I don’t want to get another mammogram and wait for results; I want to minimize the chance of recurrence (well, as much as I can); I had huge breasts and didn’t want to feel lopsided; I wanted to make sure that absolutely everything is taken out the first time around in case something wasn’t visible on the tests. This isn't an advice, just sharing my experience. Good luck with your choice!

InnaB2018

Amica, Coleen, how are you doing

Amica

Hi InnaB - I'm doing OK I guess. I wasn't able to get a second opinion, the first place I tried said they were too busy and I didn't live in the right geographic area. So I'm still trying to get that. How far along are you with the Taxol & how's that going?

ColleenS80

Hey ladies, sorry I’ve been MIA a few days! I am headed to Nashville right now and will see Dr Mayer at Vanderbilt Breast Center in the morning. I just spoke with the nurse navigator and she was super nice. She said Dr. Mayer sets aside 60-90 minutes for new patients so I have my list of questions and studies ready lol. I’ll let you know how it goes! i hope everyone is doing well.

Amica

Colleen

That's excellent! I hope you get clear answers to your questions--that's already a great sign that the doc set aside a good amount of time! Good luck!!!

ksusan

That's good.

Dani444

Amica, sorry to hear you were not able to get a second opinion.

Colleen, Good luck at your appointment in the morning! That is fantastic that he sets aside that much time for new patient visits!

Amica

Dani444 thanks. I hope you're healing up OK from the biopsy & are not too uncomfortable. Are you going to be meeting with the surgeon soon? I hope they have a recommendation for you on mastectomy/or lumpectomy. It's so hard to make those decisions!

InnaB2018

Coleen, good for you! My doctors sways spend a long time with me. I am really happy I went with Memorial Sloan Kettering for all my treatments.

Amica, I had 2 DD Taxols. Had a horrible delayed allergic reaction to the solvent and was switched to Abraxane for the next 2 treatments. Abraxane went much easier in terms of infusion. No pain, no itching at the site of the IV. Same side effects, though. Pain, fainting, fatigue. My last treatment is on Wednesday!

I am so sorry you couldn’t get second opinion. This seems unfair. Is there a way for you to get treated in the US? Are you still a US citizen? I don’t mean to pry, but there has to be something that can be done in this situation!

hapa

Dani - I had BMX with implant reconstruction and so far the surgery has not been that big of a deal. My implants are pre-pec and not uncomfortable. When I was first diagnosed, I wanted to just lob them off and be done with it, but once I got through with chemo and had a few months to think about it I changed my mind. Unfortunately, I didn't really have a choice because my cancer was multifocal and my boobs were small to begin with. I would have done a lumpectomy if I thought it would have given me a good outcome. I did bilateral because I wanted my boobs to match. I wasn't a candidate for DIEP recon, though I probably wouldn't have done it anyway because it seems a lot more complicated than just throwing in an implant, which is pretty much all I had done. If you're doing a UMX, DIEP reconstruction would likely match your remaining breast pretty well, but if you get one implant you'll have one forever perky breast while the other one continues to sag as you age. Best of luck with your decision.

Amica - I'm kind of confused as to why you are considered stage IV, do you just have recurrence in the nodes? That seems like it should be curable with drugs and radiation.

Colleen - I googled Dr. Mayer at Vanderbilt and it looks like she's very active in research, with a lot of very recent and very relevant publications. Let us know what she says.

I've been recommended for radiation and frankly I'm just not sure I want to do it. I think I'll be getting a second opinion myself. I'm considering travelling to Stanford, though I might also hit UCLA, USC, or City of Hope as they are all closer and LA is a lot more fun than Palo Alto. There is nowhere locally (besides Mayo, which is where I'm treating) that I trust. If I could pick anywhere I'd go to MSK, but I don't want to fly all the way to NYC, especially now with all the unhealed lymphatic trauma. Is there a hospital that is on the leading edge of radiation oncology? It seems like the red-headed stepchild of breast cancer treatment.

Amica

hapa-- I don't totally understand my diagnosis, and that's why I want a second opinion.

InnaB - I feel for you going through the trials and tribulations of chemo. But last one on Wednesday --- Yay!! Hope you feel better before not too long!

beeline

Amica, I'm sure you've already covered all your bases, but I was (sort of still am) considering the online second opinion program at Dana Farber so maybe that could be one option?

Colleen - good luck at Vanderbilt! Let us know how it goes.

Dani - I went with umx no recon. My BS didn't think she could get a good result with lumpectomy because my breasts are v small. And good thing, too, as they found a huge area of DCIS so might have taken the whole thing anyway. I didn't do recon because implants were recommended on both sides to match and I decided I'd rather leave my poor "good" breast intact for now. I hope you get the info you need to make your decision.

hapa - let us know where you end up. It's great you have so many options!

I finally met with my MO at the end of last week and to my happy surprise really liked him. He spent 2 hours answering my questions, even going down the list in my notebook with me, was very open to and knowledgeable about the clinical trial I mentioned though it would be through a different health system, and made a Ghostbusters joke when I said, "so who do I call...?" I feel 99% confident that the treatment plan would be the same anywhere else I'd go but am still considering pursuing a second opinion.

hapa

Amica - can you afford an online second opinion from a US cancer center like beeline suggested? I think it would be worth your money.

Amica

I will take a look at that, thanks

OK, I checked it out. It looks like anyone from around the world can get an online second opinion at Dana Farber --- it says "The cost for most second opinions is $2,000." I could see them charging more in order to deal with an out-of U.S. hospital. I will phone them tomorrow to find out.

First, I'm still going to try again to get a second opinion at another Ontario cancer center. If that doesn't work out, then I will consider the American option, although in Canadian dollars that's $2614.00 ! I don't know.

I left my onc a message today, hoping she calls me back, and see if I can get a better understanding of why she is treating it as Stage IV. Most likely she's right, and maybe I'm just resisting that diagnosis.

JaBoo

Coleen, I wonder how it went yesterday?

My brain MRI from yesterday was clear! yay!

InnaB2018

Congrats, JaBoo!

ksusan

Hooray!

hapa

Jaboo - that's great news!

Amica - you may also want to check out Johns Hopkins for a second opinion ETA:nvm, JH doesn't do second opinions for cancer. However, Cleveland Clinic does and it's $745 USD according to their website.

beeline

great news, Jaboo

hapa

My path result from the surgical specimen came back and my tumor went from Her2+ to Her2-. That is what I had suspected. I imagine my MO won't bother adding Perjeta to my treatment.

Amica

JaBoo - yay! that's great news

hapa - Thanks, I will check it out, that's a lot cheaper than Dana Farber. I put in a request with my family doc to first see if I can get a second opinion at another cancer center here in Ontario.

Amica

Hapa,

What is it a pathological mis-reading or did your tumor actually change?

hapa

Amica - I had two biopsies. The first one was read by three pathologists when I was getting initial consultations and all three said Her2- on IHC testing. The second one was done two months later as part of a clinical study I was on for neoadjuvant Ibrance and it came back equivocal on IHC testsing, was sent for FISH and came back positive on FISH reflex probe. The two biopsies were taken from different parts of the tumor. I think the tumor was probably heterogeneous, with some parts being more Her2+ than others, and the Her2+ cells were resolved by the chemo and herceptin, while the Her2- ones were not. My MO had mentioned adding Ibrance if it came back Her2-, but I don't know if my insurance will pay for it.