My Husband, My Life, My Love, My Family, My Cancer

runor

Something happened.

About cancer.

Nothing bad. In fact, something good, I think. I"m not sure what to think.

I have not posted it because I felt that it would be bad form to share what seems to be good news. Isn't that awful? That I think I will be upsetting someone if I tell what happened at my oncologist visit early this month? But it has not left my mind. Seems it is something I need to share. So I wade in. You can tell me what you think.

My original pathology report after biopsy was stage 1, grade 1. I asked for a second opinion. My specimen was sent off to The Grande Fromage (the head cheese for those who don't speak French) of all pathology reports and he upgraded me. From stage 1 to stage 2B and to grade 2 from grade 1. He included the reasons why he felt I was under staged and why he felt that my tumour with it's 'highly invasive growth pattern', was worse than first thought.

This news was very demoralizing and alarming. Back in 2017.

At this second annual visit with my oncologist I asked if there was any benefit to me staying on tamoxifen for 10 years instead of 5. He looked puzzled. He said "You are such an extremely low risk, there is no known point at all to 10 years in your case."

It was my turn to be puzzled because my tumour was on the large side (25mms on path report) and upgraded to stage 2, grade 2. This is, to me, not something trivial. My situation had been deemed WORSE than originally thought. I reminded oncologist of this.

He spent a moment digging through my file. . He reads a few things then looks at me and shakes his head. He says (paraphrasing), "The Oncotype places you firmly in the grade 1, stage 1 category and they come to this conclusion based on a much larger array of tests than your pathologist has at his disposal. As to your tumour size or 25mms, it actually says that the size of your tumour was indeterminate with the last accurate measurement at 19mm so they estimated it to be, at its largest, 25mm, but this is a guess erring on the safe side. The true size of your cancer is not known, but there are clean margins all around. So if the Oncotype says you are stage 1 grade 1, it doesn't matter what your second opinion says. Oncotype wins. "

This was good news. But I think in that moment I was not able to wrap my head around it. I think for a long time I have been afraid to feel any hope. Afraid to let my guard down lest I be sucker punched again by this disease. Truth told any of us, no matter what, can be sucker punched again. But still ... this was news that I had not been aware of for the past two years. I want to feel cautiously optimistic. But I also feel guilty as hell. And like being hopeful is setting me up for failure. God. I need wine.

Simone80

Congrats runo r on your Good news. Never feel bad about good news.

JFL,

I think I saw Blain Jennifer post on the fen Ben thread.

Grannax2

Well, some crazy miscommunication happened but I do have my new power port and ready for Chemo this morning. Long story later 💞

candy-678

I am in your pocket this morning Grannax. Tell us the story later.

Micmel

love to all you beauties. Runor.... NEVER be afraid to share good news. Especially here. I love it. It makes me fight harder. You’re special to me so therefore would want good things for you. 💙

My thoughts today are with Grannax., GumDoctor.... Gracie(getting scared here). Parry(scared again) Blane Jennifer, I have not seen either. Not since that one post she mentioned. Didn’t sound like she knew much. The death of Deanna is awful. Her DH. Posted the obit. When you see it in writing. It stabs your soul. Effin cancer.

JFL~ welcome back lovely. 🥰

Simone Hello sweetheart !

Yndorian~😉💚

Micmel

illimae

Rumor, always feel free to share good news.

Life is ups and downs, we all need some cheer among the sadness and uncertainty.

Bliss58

Hi all. Haven't been here in a long while, but have been reading a lot yesterday and this morning to catch up. I've been reading periodically, but not speaking.

LOL, Micmel on the Fuckening. Good chuckle this morning!

Deanna's passing was a gut punch for sure. Where did her husband post her obit?

I saw AnimalCrackers asked about, too. I see this morning, she hasn't been "seen" on BCO since last February, but she posted in October she was back on chemo. Anyone know more about her?

Tanya_Djamila

Grannax were up and with you for this first tx.

Runor take that good news to the bank and celebrate.

Have a good day all

Tanya

Simone80

Good Morning everyone! I had a hard time sleeping last night. I have been struggling with nausea. I went to a acupuncturist last Sat. and I am still trying to get rid of the toxins that were released from that session. Any suggestions for helping the body speed up the process?

Grannax, Good luck today, praying your treatment goes well with little or no SEs.

Micmel

Bliss~Hello there sweetheart l, welcome back. Always good to see familiar faces. I saw one of the ladies copied her obit from the Facebook page they both belonged to. It was beautiful and sad for those who loved her. So damn sad. Animal crackers. I haven't seen either. 😪 loving can be difficult! The obit was on her named thread Deanna...

Hi Mae!!🧡🍭

Simone~Hello darling. I have never had acupuncture before.Ask Philly , she knows that shit! Cupping and etc...Always good to see you! Hope your day is a good one.

Tanya~Hello beautiful, hope its not too hot in Florida. We have flash flood warnings again. Grab a raft!

Much love ~M

Xxxxxxxxxxxxxxx

Runor: your good news made me happy. You are always supporting others, you deserve good things to happen to you!

Gumdoctor

Runor - Please do not feel guilty (but I so understand what you are saying). We are so H A P P Y for you.

I have been skimming your posts just not posting much.

Had my Farewell to Hair Party today. 60 people with cake pizza and live Facebook video.

Very drained from all these new changes...so much to keep up with. Chemo went ok last week...next round tomorrow...accessing the port was very brutal the day after surgery...but...it should be better tomorrow with a whole week of healing under my belt.

Army still has not decided if they will kick me out on my b-day 11 AUGUST. I went nuclear on them and it made no difference.

All we can do now is hope God is really in charge...and will really save me from destitution and from having to stop all tx.

I am not ready to focus on my funeral yet...

Gumdoctor

Micmel

GumDoctor~So much on your team! I wish there was a way we could all show up some where representing a group of strong damn women that ebb and flow every damn day to keep our freaking minds from collapse. I can’t believe that you even have to worry at all about such bullshit. If you see possible issues coming, start seeking information about health coverage through. Your state, or get a lawyer on contingency. Having MBC should be enough like WTF!!!! 🥵

Micmel

Yndorian~I agree with you Runor does always support everyone, with a touch of laughter, and a big beautiful heart. She does deserve the best news. We all do!!! We all give our heart, that’s why we become attached. You just can’t help it. She is an amazing sister. She should actually write a book.... her take on life and people is amazingly accurately funny!

You both are loved!

Speaking of loved.....Lynnwood?? 🌸

teaka123

Runor, Happy for you and your wonderful news. I think we all feel encouraged in our own journey when we hear of something good of happening to another. Thank you for sharing. BTW I am very entertained by your well written oft funny posts

teaka123

Runor, Happy for you and your wonderful news. I think we all feel encouraged in our own journey when we hear of something good happening to another. Thank you for sharing. BTW, I am very entertained by your well written oft funny posts.

Micmel

teaka~I love reading Runors posts. She makes me smile everyday day! Welcome to our second home! It’s. Nice to see you here!

Gumdoctor

Welcome to the Farewell to Hair Party (Yesterday)

60 people, Pizza, Cake (prettiest cake I have ever seen), Live Facebook Video...

Colonel Gumdoctor Valerie - Before and After

Choked up once and got it quickly back together

Gumdoctor

LoveFromPhilly

gumdoctor these are such amazing photos. I know it’s gotta be super weird to shave your head but good on ya and all of your peoples for making the best out of it. Positivity and celebration can help hold a heart up high in the midst of difficulty times. You look beautiful and that cake looks yummy!!!!

Rosie24

Gumdoctor, That cake is awesome! And more than the cake, you are an inspiration to me. Thanks for sharing your ups and downs and your great attitude. Could you remind me/us of your FB page?

movingsoccermom

Gumdoctor, what fabulous pictures!!! Such a great way to deal with such a difficult event. Your beautiful smile really lights up those pictures--before and after!!

Hang in there!

runor

Gumdoctor, you rock the no hair look. Having been dropped on my head as a child (more than once I am sure!) there is no doubt a large, unsightly flat spot hidden by my hair. But you have a skull shape that lends itself nicely to being on display. And your sassy glasses! You go girl!

candy-678

Ok I need to vent and get advise from my friends on here. I will probably cross post to several threads to get several ideas from you all. This could be long so bear with me.

I had my MO appt this morning ( last seen 2 months ago ). Follow up from latest CT scan, TM's, and check in. My CT was stable. I knew that from seeing results on patient portal. My TM's have been more elevated last 2 months. Yet again I knew that going in to appt also. I said to the MO that I know they can be unreliable but I still want to do them monthly and could it be progression that is not seen by CT scan yet? She said Yes both- unreliable or progression not seen on scans yet. She then said even if they double next month the insurance would not approve a scan sooner than the 3 month time frame. WHAT??!!!!! I thought if the TM's rise significantly that would warrant a new scan. She said not with my insurance. ????? Really????? So that is comforting.

Then I discussed my positive results of blood test for an autoimmune condition that can increase the risk of blood clots. See thread on Autoimmune Diseases on BCO for the long story of this. She was upset. She said she treats the cancer and it is the responsibility of the rheumatologist that ordered that test to treat this. I was wanting her - hematology/oncology - to handle it all. She said she was able to, but would not since she did not initially order the test. She treats my cancer only. OH MY GOSH !!!!!!!!!

Then I was explaining that I like a doc that I can have a conversation with about my treatment plan. That we can co-manage the cancer. That I do a lot of research about clinical trials, new meds coming for MBC, and stay informed about advancements. She said she has 10-15 minutes for visit and cannot discuss all the trials out there.

How do you all that post on here about having an open relationship with your MO do it????? Am I just not lucky enough to have that type of MO????? I am really upset that she will not see the whole picture of my health and treat the whole situation. And I am fearful that when I do progress we cannot discuss possibilities for the next treatment. That she will say the next treatment is ____ and I am to say OK and not question it. That our "appts" are come in, say Hi, do vital signs, and say Bye.

What do I do? Do I look for another MO now? When progression comes? I try to explain myself in my appts but maybe I am not explaining myself well enough- in that 10 minute appt. And if I do go to another MO, how do I know that the next one won't feel/do the same way??? I don't want to doctor hop and travel around.

Oh my gosh. I feel so disheartened now.

Gumdoctor

Thank you. I am making my posts public so a person does not have to do friends request now.

It is under my "real name" - Valerie McDavid.

The writing is helping me process and figure things each day as I go forward. Also hoping they can help someone else...

Gumdoctor

Gumdoctor

Thank you. I am making my posts public so a person does not have to do friends request now.

It is under my "real name" - Valerie McDavid.

The writing is helping me process and figure things each day as I go forward. Also hoping they can help someone else...

Gumdoctor

Gumdoctor

Candy - This us what I got from Dt Strangler. Sounds like your doc is struggling with more than your request.

Gumdoctor

marianelizabeth

By afternoon the day I saw my MO, she has conferenced with her colleagues and no Tamoxifen but another chemo, Gemcitabine and I start next Thursday. So far today I have taken two 8 mg tablets of hydromorphone at 04, 05, 06 and 07 plus my Metadol. By 08 it was working and we are going for a walk but I an feel the pain creeping back. Luckily i got a cancellation appointment for tomorrow with my wonderful pain doctor. Thanks you guys for all.

Marian

candy-678

I posted before I read everyone elses posts. Sorry.

Gumdoctor-- You rock it girl. Great idea for the party and cake. The first time I lost my hair ( chemo in Aug 2017 ) I had my hairdresser shave it. I met her at the salon. No one else there. And I cried. And so did she. Pretty devastating. I like your plan better !!!!!! Maybe if/when next time for me I can do your plan. You know, the only one who saw me bald was the hairdresser and my cat. I always wore a wig or scarf when around people even family. God, you are strong Gumdoctor. You are my hero.

Micmel

Hello beauties~

GumDoctor~I totally agree with runor, you're definitely taking charge. You're beautiful inside and out apparently, everyone around you sees it clearly. You're an amazing person. You look pretty damn in charge if you ask me.

Runor~Hello love 💗 🌹always good to see you.

Candy~I was thinking about your post and if I think about it. I don't challenge my ONC very much at all. He's Japanese and has chopped English. He doesn't hold back with his opinions and frankly spells it out. He's a numbers guy. He does go by my tumor markers and of course any added pain, and or how I feel. My markers have always been a very good indicator for me. Which was kinda bad in the beginning, because my blood work was never out of range. Every time I go,it usually is the same thing. He tells me there are many treatments to go for me and is reassuring when there is reason to be. When it was still in my liver before surgery, he wasn't very rosey. By my going to another oncologist surgeon for my ovaries, he was the one who stepped up and said “no we are getting aggressive here". That led me to nead for close to three years now. Different people look a puzzles differently. I'd go to as many doctors as possible until you feel ok with your care. The problem is the insurance companies are very strict with the scanning rules. I can only have two lifetime full body scans. They suck! Once you're in the cancer conveyor belt, you just keep moving along. I hope she gets a hint and makes you more reassured.

Movingsoccermom~I agree she's amazing (GumDoctor), it's nice to see you here. My second home. I hope you're having a good day... cloudy where I am.

Rosie~Hello lovely. Always nice to see you here.

Philly~Looks like rain darling. Stay safe in these storms. Hope you're doing well.

I am nothing but tired. Somedays I feel like a dog. All I do is sleep. Well, basically it is all I do. Hamsters on the wheel.. walking the life of cancer.