Anyone want to sit and wait with me?

Amica

hapa---Oh, OK. Now I remember you and Colleen discussing that issue. It's incredible how complex tumors can be. That makes things complicated for you, I hope it works out.

Ibrance has a patient assistance program I believe. I'm on it, they said they will be paying my co-pay, even though I haven't started it yet, but in the U.S. they may pay more. I'm still waiting to meet on Sept 21st with a radiologist for a clinical trial on stereotactic body radiation therapy. I don't want to start the Ibrance and then stop it. It doesn't sound like a very pleasant drug to be on, but then I guess none of them are.

Amica

InnaB

Wasn't it your last chemo day today?! If so - YAY!!!

I hope you feel so much better in a couple of weeks.

HUGS,

Amica

ColleenS80

Hey ladies! Just caught up on all your news. Amica I was going to suggest Cleveland clinic too as I looked into their online program while trying to decide about second opinions. I hope that’s an option for you! JaBoo-yay!! So glad!! Hapa, I’m sorry you’re dealing with that-it’s the worst when things aren’t clear!!

Yesterday was my appointment with Dr. Mayer and I am so very glad I went. We spent an hour together. She went over everything she wanted to say and then answered all my questions.

She agreed with my MO’s treatments so far which gave me a great deal of peace of mind. She did say she was sending a note to add Reclast, both for bone health and due to the studies that show it to help prevent bone mets. She also said it was a non-negotiable for me to be on calcium and vitamin D. She told me that my lack of response to the chemo wasn’t necessarily correlated to a worse outcome, especially with triple positive cancers. This meant so much to me, as my non-response had really scared and devastated me. She said she didn’t think my outlook was as bad as I probably thought it was. I do have some high risk factors (HER2+ and node involvement) but I also have some “good” things (grade 1 and very low proliferation rate). She said in her opinion of my individual case, she felt I had an 85-90% chance of this not popping up somewhere else later on.

Basically in summary, I am young and have some high risk factors, so they are throwing the kitchen sink at me to be as safe as possible, but she really feels positive that I have a good chance of not developing mets.

Ladies, I can’t tell you how much this has eased my mind. Of course my worry will never go away completely, and no one knows for sure, but to have someone else confirm my treatment plan and tell me they had high hopes for my outcome took so much weight off my shoulders. I feel peace that I’m doing everything I can.I really encourage you to get a second opinion if you are a worry wort like me! It’s taken away some of this awful burden.

ksusan

Colleen, it sounds like a really productive and reassuring consultation!

Amica

Colleen

That is encouraging, and I am so glad she gave you more peace of mind! What she said to you makes a lot of sense! I couldn't agree more that second opinions are important.

(I asked my onc today over the phone if she could request another second opinion since my first one was turned down, and she got somewhat huffy and said she wouldn't because she didn't need a second opinion. Well, duh, the second opinion isn't for HER, it's for ME...geez.)

JaBoo

Coleen, oh, I am so glad for you! It really is encouraging to hear that your MO is doing the right thing! And the note about Reclast is good too. That´s really a good news and I feel this really will help you!

And thank you so much for sharing the whole info. As we are the same age and have similar dx, are both on Zoladex, I will make a note about Reclast too. I will ask my MO about it, about the whole bone-health issue.

When I read about your experience with second opinion, I am thinking more and more that I should find one too... I really like my MO and just this week she has shown soooo much understanding towards me (I had a weak moment) and answered so many of my questions even when I was not shedulled for an appointment that day (!!) ... but maybe I need to hear that my treatment is OK medically. I am still wondering about some issues, like MX/BMX/nothing or AI/Tamoxifen and more... Exactly as you say - I am a worry wort and a terrible one!

hapa

Colleen - my MO also said he thought my outlook was pretty good. I'm glad you go some peace of mind.

I've decided to get a second opinion on radiation at MD Anderson. Started the referral process today. It is a PITA.

beeline

Colleen - that is great, I'm so glad your second opinion gave you some reassurance and also that she was positive about your future. For some reason my onc and chemo nurse have felt the need to remind me of my prognosis stats this week, like I am not fully aware that I am stage 3C! But I figure when I look at NHS predict, with treatment my 10 year chances are 80%. That's a B! I mean, of course I'd rather be an A+, or even better not have bc at all, but I don't think it's wrong to feel positive about 80%. Anyway, sorry, I diverge. Glad your news was good!

Amica, hapa, let us know how you get on with second opinions. I've decided to take the plunge and go for an online second opinion in the US even though I start chemo next week. I just think it will (hopefully) give me peace of mind that I am doing everything I can -- or if not, give me some other avenues to pursue.

InnaB2018

Coleen, happy you had such a good session with another oncologist! It’s extremely important to trust your doctor. Yay for you!

Well, I had my last Abraxane on Wednesday and side effects hit me almost immediately this time. Tingling and itching all over, feeling crappy all the time. Already fainted twice. My husband got so scared, he told me not to drive anymore and call an Uber for appointments. Somehow I developed a cord in my right armpit, although I still do arm exercises three times a day. It’s rather painful. Have a pt appt next Thursday. My MO said I won’t enjoy this particular massage session, but it doesn’t look like I have a choice.

I signed up for the Radcomp study and will learn next week whether I was selected for proton or photon radiation. I hope it’s protons. I also feel like the doctors throw at least 5 kitchen sinks at me because if my age and because I had the beginning of LVI. I was given a choice between Tamoxifen and Arimidex with Lupron shots after the rads, and I am not extatic about either of these meds. Will probably agree to Arimidex because of higher chance of preventing recurrence.

Amica, hapa, beeline, good luck with your second opinions! Please keep us posted.

Amica

InnaB - hope you feel better soon!

Gudrun

so happy for you Colleen.

"She told me that my lack of response to the chemo wasn't necessarily correlated to a worse outcome, especially with triple positive cancers."

Exactly what we've been told at our 2nd opinion.

Nana2Livi

Colleen, I will share your waiting room. Once again, I’m in a holding pattern. I was diagnosed with IDC through a stereotactic biopsy on 8/17. Saw the surgeon on 8/21 and had a lumpectomy and a cluster of lymph nodes removed on 8/27. I saw my oncologist on 9/10. He told me he did not think that I would benefit any more from chemo and radiation than just radiation because it was Stage 1. Fast forward to yesterday afternoon. I got a call from the radiation center informing me that my oncologist had referred my biopsy and resent blood work to somewhere (?) to see if I should have chemo first and I would get a call in two weeks either from them to start radiation or the oncologist office to discuss chemo. I have seen my CA27-29, LDH, Mono%, and MONO# results from that blood work. They are all high but of course I don’t know if any are of special concern or expected with BC. I’m really confused!

Thanks for listening.

JaBoo

Nana2 - maybe your samples were sent for Oncotype test? Just guessing...

Nana2Livi

JaBoo, that’s what I’m thinking. It’s that hurry up and wait that gets to us.

beeline

Hey Amica, just thinking of you. Did you ever get your CT/PET results back? Any luck on that blasted 2nd opinion?

Inna - hope the PT appt helps and isn't too painful. And that you get into the trial arm you want!

Nana, sorry you've had to join the waiting room. Hope you get answers soon!

ColleenS80

Hey friends!

Thanks so much for sharing the happiness of my good appointment! I hope everyone is doing well!

Gudrun-so nice to hear another dr say the same thing! Thanks for sharing!

Nana-ugh I’m so sorry you’re in the confusion/waiting/holding pattern!! Please join us and vent/discuss/distract however you need to-we’re here for you! Let us know what you find out next!

I had my stitches taken out of my mouth from my apicoectomy today. No pain but still swollen. I’m realllly praying it goes down and I don’t have any more issues with it. Reclast can cause dental issues and I really don’t want to deal with something else!

Amica

Colleen - I hope your mouth heals up quickly! and hope there are no more issues or pain.

Beeline- I have the PET-CT next week. I'm still working on that darn second opinion---many hurdles. Good luck with your chemo!! Let us know how it goes.

JaBoo

Inna, interesting about the trial... I asked and I am not a candidate for protons. There's a proton center here. Exciting that you have a possibility of such a trial! I hope you get into the arm you wish for.

Coleen, I hope it heals soon in your mouth! The teeth problems suck. And there's so many of them 😁

I'm waiting now for my appointment with MO, so I am sitting and waiting

hapa

I'm waiting to hear back from MD Anderson about my appointment for a second opinion on radiation. They're also going to go over all of my pathology slides, which should be interesting. I asked to get in on Monday and the lady on the phone thought that was doable. I have a plane ticket on hold so I hope she gets back to me today.

Amica

hapa--- that's very encouraging news ! It's great to get a pathology review.

Amica

Well the second ontario Cancer hospital refused to provide a second opinion and/or a transfer, they are too busy, so I've been turned down by two. I have tried to initiate a second opinion with Cleveland Clinic but they want the pathology slides and am having trouble getting the slides released and all the records (it will take 30 days to get the records). I am going to contact a government Health Ombudsman for Ontario to see if they can help me because I really wanted to transfer to another hospital, but I am being prevented from doing so in Ontario. Honestly I wish I was back in the U.S. but need to stay here because of my 94 year old father.

ksusan

Yuck! Contacting the ombudsman sounds like a good idea!

ColleenS80

Amica, I’m so sorry this has been such a pain for you. Cancer is hard enough-we shouldnt to have to fight so hard to get what we feel we need to fight it. ((Hugs))

JaBoo

I was in the "waiting room" this whole week and I was so afraid of the results that I hadn't told anybody. I told my DH only a few hours before the appointment. I was really stressed about it.

I'm talking about the genetic testing. I learned the results yesterday - I'm negative in the whole set of onco-genes that can be tested up to now. What a relief! Well, I know, I still got BC, so there is obviously something (two maternal aunts got BC in their 60s, both alive and well)... They are going to call and ask if I want to be retested in a few years.

BUT I'm right back in the waiting room: my cancer boob is painfull. I was complaining several times to my MO untill she ordered an ultrasound. It's shedulled for Oct. 4th. I wonder what it could be. The pain is severe at times. After the lumpectomies I healed exceptionally well and had no pain after a few days post op. And now this is going on for several weeks.

The whole C-situation really is full of waiting

Fritzmylove

Hi all. I was diagnosed Wednesday, and am now waiting until Monday to see my BS for the first time. They found it in a lymph node that they biopsied, and it has thrown me into a panic. I was told it's pretty extensive in the breast, but still no mass is detected. What does that mean!? I've asked every medical professional that I've come into contact, and no one can tell me much. I'm freaking out that I've had this for a long time and that it's spread. Parts of my body I never noticed before have started to ache or tingle. The back of my head. My shoulder. My knee. Is this the cancer? Is it my brain freaking out? I have no desire to eat or drink. I'm panicked at the thought of leaving my 2 young children without a mother. How will my husband cope? I've noticed that I have ridges on my fingernails. Is this a sign that it's spread? I don't know how I'll make it until Monday, and then through the various tests I'll be put through to determine whether or not it's spread past the lymph node(s).

bella2013

Fritz, I am so sorry that you have to find yourself here. You will find kind, loving support here on these boards. You are in shock right now, we have all been through it. Try not to let your mind go to worst case scenarios. You don’t have all the information about your cancer yet. Having hormone positive receptor cancer is treatable and survivable. When you meet with your BS on Monday maybe he will be able to share the Stage of your cancer. He will also discuss surgical options...lumpectomy or mastectomy. You should have a medical oncologist (MO) on your team to discusss chemo and/or rads.

You have another full time job...research and read everything you can about your cancer. Breast Cancer.Org (BCO) is a good resource to use. There are many articles regarding cancer treatment and current research. Stay away from wacky websites that do not have integrity.

Remember to breathe...this is a long road and there are no quick fixes to BC. In the days to come you will have so much information coming at you and important decisions to make that you never dreamed you would have to make. Knowledge is power. Take someone with you to every appointment. Seriously, every appointment. I took my husband and sister. I am glad I took both because this cancer diagnosis was happening to him too. My sister heard things we both missed due to shock and fear.

Your #1 goal is to be cancer free! Use every tool available to throw at this beast.

Please check in on Monday and let us know the update. We are here for you.

I am praying for peace and strength for you.

((Hugs)

ColleenS80

JaBoo-So glad you tested negative! But so sorry you’re in the waiting room again with pain. The waiting is awful! Let us know how the ultrasound goes-praying it’s perfectly benign! I had my brain MRI Thursday night and felt it would probably be fine, but I was still worried and anxious-how can you not be?? It was all normal thankfully.

Fritz-I’m so sorry you sound EXACTLY like I did when I was diagnosed. All the same fears and worries. I’m 38 with two small kids. It’s a terrible situation but you’re not alone. I agree with Bella-there are tons of wonderful women here waiting to support you and help in any way we can.

I’m not sure what it means if it’s extensive with no mass exactly, however I know I’ve seen women here talk about that same situation. Perhaps a post in the forum “newly diagnosed” would yield you some ideas? I know the unknowns are the worst.

I also had a lymph node biopsied and ended up having cancer in two—that’s also what set me over the edge. I know it’s so scary. But, it’s all out now and I’m doing really well and you will, too. You will find women here in all stages that have survived and thrived. Have hope, and call on us when you need to. Please let us know how things go Monday.

JaBoo

Fritzmylove, just breath and keep going... this thread is a safe harbour, you'll see... Coleen here is also very young with little kids and so am I.... I also think about my DH every day, how will he manage the household and our small kids without me?..... Well, but we are not there yet, are we? Those little ones are our blessing. They help us so much just with their existence... and with their natural love and hugs. And with their little problems (like "he's taken my teddy! give it back! mommy, help!")... they keep us occupied.

About your pains - I believe it's your nerves and anxiety working up. Breathe deeply. Or cry. Or whatever works for you. After my dx, I had a terrible pain in both breasts. My neck hurt and I had a bad pain above my forehead - there's a small lump, I've had it there years and years. It never hurt, but after I learned I had BC, it started to hurt like hell. Well, now it doesn't hurt anymore - it's still there, but I've had various usuall scans for mets and they all have come back negative. I believe your pains will gradually subside, the anxiety and shock of diagnosis is just overwhelming.

I hope your waiting will be at least bearable. As I've written just above your post - cancer is about A LOT of waiting. But when you know more about your tx, you will learn to cope better. You'll see. And don't forget to ask you MO about everything you need, make a list and tell him about everything.

JaBoo

Coleen, I see we have written at the same moment. YAY for your good MRI!! So it was a week of good results for us.

ksusan

Jaboo, I'm happy to hear your good news!