Anyone want to sit and wait with me?

ksusan

All clear--more soon when I have better internet.

ColleenS80

oxygen, good things to think about, thanks!

ksusan-yay!!! Happy dance!

beeline

ksusan - that's great news! Me, too, phew! Now I feel like I can move onto making a plan... though of course I am just waiting for the MO appt. Friday. Always more waiting!

hapa - really glad to hear you love your MO and he had a positive take on your results

Colleen, hoping you are able to enjoy the long weekend -- you must be counting down to the 11th!

InnaB2018

ksusan, beeline, congrats on your good news

Moderators

Happy dances here too!!

JaBoo

I am too in the waiting room now... and it's a miserable one. It's hitting me hard. Not just this waiting, I mean the whole situation. I feel like crap from my last AC 1 week ago. I'm desperatelly trying to keep caring for my kids and look normal for them (they are small). I am trying to look normal to my DH and failing. It's very hard on him. I constantly think about them, the kids + DH. What had I done to them (albeit unwillingly).

What am I waiting for - 1. I have a brain MRI next week. 2. Afterwards, Taxol + Herceptin starts. 3. Talk with my MO about Perjeta which is very new in the EU for my dx and I fear I won't get it.

hapa

Good luck with your brain MRI JaBoo. I hope Taxol is easier for you than the AC was.

ksusan - congrats on the clean scan!

Colleen - keep us up to date on the dental situation.

ElaineTherese

JaBoo,

Can you get anyone (family or friend) to help with the kids? It IS hard to parent during chemo. You need to take care of yourself, too.

ColleenS80

beeline, happy dance for your good news too!!!

JaBoo, I’m so sorry. We are super similar in age and diagnosis. I also have two kids and try so hard to be “normal” for them. Please don’t feel guilty for what you’re putting them through, you did NOT ask for this! I’ve had to work on guilt a lot myself, but dangit, it’s not our fault and we can’t let it hurt us even more than it already has. ❤️ I have a brain MRI 9/20...what day next week is yours? Praying it goes well. Please let us know!

hapa, thanks! I’m having my “procedure” tomorrow to remove the infection from my gums. Hoping it’s confirmed that it’s just leftover infection and it doesn’t hurt too bad.

JaBoo

Coleen, yes, I should be working on my guilt.. .. I'm a mess right now. I miss my old self and need to cry this over... I see our dx and tx are very similar, we are the same age with 2 kids. I see you received neo-adj tx, whereas I went under the knife first... I'm a super anxious freak, so I am glad I went for the surgery first. although it may have been a mistake, I see neo-adj tx is used more in our cases.... anyway, just rattling, sorry. Actually, I've been reading your posts a lot through the boards. Good luck with your tooth problem, that sucks, hopefully they get it done quickly.

My brain MRI is on the 11th. Apparently, they do it for everybody here, as part of staging prior to Herceptin tx. Good luck to your brain MRI on the 20th.

I'm currently very anxious about Perjeta. I think I should receive it. Have several risk factors, like grade 3 + lymphovascular invasion + node involvement + tumor over 2cm. But our insurance system here is very stiff and I fear the doctors may be too. for early stages it's used only neoadjuvantly, the EU aproved it for adjuvant use only this June. I have a blood check and app with my MO on Friday, so I will know more. I don't know what to do more now....

waiting and trying to look normal to everybody and then waiting some more

oxygen18

JaBoo,

So sorry you are having to deal with this situation and how it is affecting your children and husband. It's good that Perjeta was just approved for adjuvant use, as that gives you leverage to ask for it. Interesting that they do a routine brain MRI, I hope you don't worry too much about it. Glad you found this comfy and friendly waiting room. Sending hugs to you and your family.

ksusan! beeline! great to hear the good news.

ColleenS80

JaBoo, thanks! I’m sitting in the waiting room at the dentist right now. Hopefully it won’t be too bad.

I feel ya on the crappy outlook...I’m so sick of the anxiety. I’d do anything to take a good, relaxing nap without waking up in a panic and my heart beating a hundred miles an hour. I can’t seem to stay in the moment-my mind is everywhere else.

good luck on your request for Perjeta! I was initially not going to receive it, but when they found it was in my nodes, it was added.

I wish I’d had surgery first, then I wouldn’t have known about my sucky response to chemo. I wish I didn’t know-it makes me so anxious and there’s nothing I can do about it.

I’ll be at vanderbilt on the day of your MRI-I hope we both have a good day with good news!!

Amica

The second opinion I asked for didn't even include an office visit. It was e-mailed to my current onocolgost and like SHE's going to share that info

I asked someone in the referrals office at the other hospital could I not simply transfer there if I was not happy with my current cancer center and they said probably not. I just don't understand. Apparently patients in Ontario have no rights. Apparently with Ontario's socialized medical system you are forced to go to the center they pick for you whether you think it is substandard or not. The nightmare continues.

ColleenS80

Aw Amica, I’m so sorry! You must be so frustrated. I wish I had some advice for you.

Have you had anymore scans since your bone scan? Are they waiting for more results before starting your treatments?

Amica

I had the brain MRI yesterday, but do not know the results yet. I kept my eyes closed, covered by a washcloth the whole time and it was not nearly as bad as I feared it would be. There a great link at Stanford with an hour's audio recording of MRI sounds so you can "rehearse" for the experience. I found it very helpful.

I am frustrated, I don't understand my onc's diagnosis.

She has prescribed an Ibrance/Femara regime. I have been on the Femara for 11 days.

ColleenS80

I’m glad the MRI wasn’t too bad! I don’t blame you for being frustrated, I would be too. I don’t understand how they determined it was stage four if it has only been found in the lymph nodes...is it because of which lymph nodes it’s in? There’s so much I still don’t get with all this bc stuff

beeline

Amica, how maddening! Don't they at least have to give you a copy of the second opinion?? I hope you get more clarity and support soon. I am also dealing with an unknown system in NZ, not sure how second opinions work, etc.... basically I'm really hoping I like my oncologist! Glad the MRI wasn't so bad at least. Hoping for good results for you.

Jaboo, I hope they agree to the Perjeta! I also have small kids and am used to taking care of everything plus full time work so trying very hard to retain some normalcy. Does the govt offer any support you can access around childcare or home help? Definitely lean on friends and anyone else who has offered -- and I say this as the worst person in the world at asking for/accepting help!

Colleen, hope the dentist was ok and it came back as just an infection. Let us know!

Amica

Colleen, beeline,

I was hoping the second opinion would offer clarification on staging but have yet to see it. Hopefully my doctor will be willing to show me the e-mail but if she won't I think that would be very unfair. From what I understand, it is Stage IV because it is a recurrence, and a new metastases, and I think, because metastases in these particular lymph nodes is classified as distant (M1.) But I would still like further clarification. My onc and I have communication problems. I'm a high-information seeker. I like to know things precisely, with a complete rationale explained to me. She sticks to brief layman's terms and glosses over a lot.

Coleen, how'd it go at the dentist?

beeline

I am like you, Amica. I want to know all the details and all the reasoning and not to be treated like an idiot!

ksusan

Amica, craziness!

InnaB2018

Amica, this is horrible... Do you have a patients’ advocate? Somebody must be able to help you. They can’t force you to stay with the oncologist you don’t trust and dont’t like!

JaBoo

Oxygen18, than you for your words of welcome...

Coleen, I have similar feelings... I, too, wake up and startle immediatelly with the realization what is happening... It's like getting a spotlight shine into my eyes and a siren howling when I wake up. My attention is wandering and I'm often forgetting things/issues concerning the kids.

I got to go to the surgery first because the tumor inicially was 15mm and nodes clear after mammo and ultrasound. after surgery, the tumor was 21mm and one node got micromets. surgery with close margins, ugh. Your nodes were found out to be positive right away?

It's great that you receive Perjeta. I'm anxious about it.

Amica, I'm so sorry for your problems with the system over there! We have a state insurance system and it is often similar. I don't have to worry about the cost of my treatment (apart from Perjeta - that's not approved and can't be covered) but also I don't get to decide a lot of things.... With second opinions it's similarly difficult here. But many people simply get their records and make an appointment somewhere else on their own, although this is being discouraged. Would this maybe be possible for you? Try and get an appointment separately? Well and I hear you about your MO speaking in laymans terms!! It happens here more often than not. They like to decide and do that without any options here! But I like my MO, she answers my questions, so I'm at least lucky in that.

Beeline, I can so much relate to you when you say you are used to take care of everything!!! I am the one taking care of everything around the kids, their doctors, kindergarten, courses, clothes... I realized some days back I have to give all that info to my DH. I'm somehow thinking very much about the possibility of my death, and what would DH do about the kids. I have to write everything down for him, for my peace of mind. No, the government doesn't offer any assistance to cancer patients reg child care, but there are other types of assistance from the state security system. But the kids have kindergarten, that is very helpfull. not in the summer, which was very difficult during chemo. now they can go there and it's very good for them. It's very cheap.

Thank you all

rachelcarter35

Amica have you looked into clinical trials at teaching hospitals down here? UCSF, John Hopkins, Mayo Clinic, Stanford may need someone with your DX. I know this is probably very overwhelming but I feel like if doctors at these places knew what you are dealing with they'd want to help. Could you write letters? I think there is a website that lists clinical trials all over the place. There is often housing that's sometimes free at most of these hospitals for out of town patients.

Maybe you've already thought of this.

I went to UCSF for my second opinion before my mastectomies and realized the decision to take a patient into a clinical trial sometimes came down to one curious doctor. They ended up not having any trial going on that applied to me but it was eye opening. After firing my plastic surgeon I've learned that there ARE doctors in this business who are really curious and love their work who love a challenge.

If you need help with researching clinical trials or writing the letters PM me. Hearing what you are going through is so frustrating to me and if I can help let me know.

Amica

InnaB

There are no patient advocates or nurse navigators at the Juravinski, except if you are an indigenous person.

I have to be my own advocate, which I am trying.

I called the doctor today. she's out of the office.. They wouldn't even give me my MRI results, wanted me to wait until the 11th when I have an appointment with the doctor. I left a message with her nurse to see if she wouldn't be willing to give me the MRI results. Why are patient records kept from the very person, the only person really, who cares about them?

Amica

rachelcarter

thanks for the suggestions. I am surprised that the Princess Margaret Hospital had zero clinical trials I would qualify for. They literally have dozens of BC trials. I might qualify for a trial in the U.S. It is complicated because I have to stay with my 94 year old father here in Canada. I'm trying to take things one step at a time, like getting a hold of that second opinion. I just put a call in to them, to see if they would be willing to share that info with me & see if it agrees with my current onc's diagnosis.

rachelcarter35

You are on our minds Amica.

Amica

thanks rachel

MRI came back clear. whew. First I called the cancer center, they said "you will have to wait until your appointment on Sept 11th to get those results or go to patient records and pay $30 for a copy." Those bastards. Called my family doctor's office; they e-mailed me the results instantly, no charge. Thank God my family doctor's office has some compassion.

Hoping for clear MRIs for all of you waiting to get those done. I forgot to say that I did take ~ 1 1/2 Ativan about 2 hours before the test, which may have been what helped the most

Dani444

Amica, Great news on a clear MRI. Wow, $30 for a copy of one test result, yikes. It is frustrating not to be able to access your health records. I understand their reasoning as to protect your personal information, but the waiting is killer. So glad your Dr.'s office got the report to you. I work for the health system where I am getting treatment and it was frustrating for me to get my initial imaging report. I would lose my job if I access my own records.

InnaB2018

Amica, congrats on your clear MRI result! That’s a very good news! How about social services, do you have those? Also, can you transfer to another oncologist at the same center? So sorry for the nightmareyou are going through. The diagnosis is bad enough, you shouldn’t be dealing with this b-shit!

ksusan

Wow, great news!