2013 Sister Warriors
Comments
-
I do not know what to think!
I went to my MO appointment yesterday. The MO (whom I'd already had an initial appt with before BMX), had not received a complete report. So he launched into discussion and kept encouraging me to be patient and let him go over te report with me. I kept interjecting until finally he realized he didn't have the part of the report that showed SLN micromet.
He was talking about hormonals only, and I shared that that scared me because my mom died of BC mets -- and she had been tamox only. I said I knew my feeling was perhaps irrational, but wanted him to know.
Then I asked him why my biopsy pathology was so different from my post-surgery path. He hadn't noticed that. So then he started talking about maybe I have multifocal BC and maybe I'd need chemo, but he wanted to have the pathologist take another look at my breast tissue and try an oncoDX on the post-surgical tissue sample.
The biopsy is higher grade and has a higher score using that Nottingham rating (I think that's the name of it). So I'm not sure how looking at the surgery tissue will help.
Bottom line, it felt to me like I had to point out things he should have known. Toward the end of our meeting, he justified some of his thinking to me as appropriate for post menopausal women. I had to remind him I am premenopausal.
"I have to talk to the pathologist, so come back in two weeks," he said.
!&*!%!! Two weeks feels unacceptable to me. I want to get going on treatment.
Also, I have lost faith in this doc. He has a good reputation, but he didnt impress me! With something so serious, he should had been looking out or me, and shoud have been prepared!
With micromet and multifocal and being premenopausal and with mixed tumor profiles, I am leaning toward chemo, but it's scary to me. I hate this uncertainty!!! And the feeling of betrayal I have.
Thanks for letting me vent
Wishing all of you a great day!0 -
Oh BeHereNow- I would have felt exactly the same way if I had that experience! That was just horrendous! Are you going to try and see a different MO?
0 -
TMM60, thanks for your supportive words. I met with an oncology counselor this morning. She was awesome. She helped me sort out my fear and feelings from the reality of the situation, including what chemo is like in this doc's practice versus other local practices. It made me realize he was flying by the seat of his pants yesterday, but that he really is a good doc with an excellent reputation. And apparently his nurses are excellent, too.
I just now sent the doc an email telling him I understand I'm in the gray area, but I want to start chemo ASAP, as I think that treatment will give me the most peace. I hope he says ok.
I'll keep you posted and hope you are having a good day
.
Geez this is stressful!! Thanks for being there for me.0 -
I totally understand the agony of the gray area. My sentinel node was negative, but my oncotype came back a 28 (high intermediate- the gray area) My MO strongly recommended chemo and I agreed. I was shocked when I learned chemo was on the table for me with negative nodes. I don't want to kick myself in the butt 10 years from now if I were to have a distant recurrence and know I didn't do everything I could to lower the risk of recurrence. I suspect I would feel the same as you if I had a micromet. Hopefully, you doc will respond to your email a little more prepared and willing to have a thorough discussion and a shared decision-making session with you. Chemo isn't fun, but it's totally doable and has turned out to less of a big deal than I feared or expected. It seems that most of us on this board think that the hair loss is the most traumatic thing about it. Hair loss is temporary!
0 -
I have already heard back, TMM60
.
He wrote back and said thanks for my note, he'll get me started ASAP, and his nurse will call me today.
So, I am in shock now, lol. Even though I pushed for it, I'm sad I qualify for it!
I'm like you on the hair loss. I will have feelings about it, I'm sure, but it is temporary.
When did you start chemo and how are you doing?
Take care!0 -
My first round was Feb 15. I am getting 4 rounds of Taxotere and Cytoxan, each 3 weeks apart. So I will get my 3rd round on Mar 29 (I will be a 3rd of the way done- hooray!). Then on to 7 weeks of rads followed by 5 years of an AI. Did he say what type of chemo he is ordering for you?
I know it must be a scary, anxious time for you, but you've got all the support in the world on these boards!
0 -
BeHereNow - great that you were able to meet with your oncology counselor to help work through your concerns. Wow, in less than a hour your posts show you got an answer from your MO. While the chemo journey is not one you want to take ... You will know that you fought hard...giving that gray area of uncertainty all the weapons available ... Fight hard brave warrior!
Sending strengthening thoughts & prayers for healing (((hugs))).
Cindy0 -
Hmm, looks like I'm joining the "gray area" group that will wait for a MO opinion if I have to have chemo/rads or not. I'm still waiting for my Oncotype results. Just met with the BS today and he indicates that he that with the pathology results that he sees so far, it is highly unlikely that chemo will be recommended for me (or be as beneficial). However, he threw me for a loop and said that the tumor margins were clear, but it was so close to the skin that rads is definitely a possibility on the table (love to hear words like "I had to completely scrape out the tissue in that area next to the skin"). I was so hoping to avoid rads with the double mastectomy so I'm a bit bummed that rads is now a possibility. I'm also feeling a little uneasy that chemo may not be on the table. I don't want to regret not throwing everything at this years down the line (the BS likened it to shooting a fly on the wall with a machine gun and leaving big holes in the wall instead of using a fly swatter). I don't meet with my MO until at least a week or two later which I know will be the one that makes the decisions, depending on when Oncotype comes back. I know I should be very happy with my pathology report (no nodes positive, no LVI, under 2cm, blah blah), but now I'm back to the "okay what do I do now" uneasiness.... Back to the "hurry up and wait" BC room for me.
0 -
Soooo happy that the surgeons office called this morning to make my consultation appt. Friday at 11. It's amazing how waiting wears you down. Just knowing I have the appt. makes me feel like I can really start the fight and hopefully I will know more about just what I am facing here.
Donna0 -
Thanks Cindi - I do feel like I am not getting all the information for the tech's I am seeing. They are all super nice and the RO is so willing to spend as much time as needed to answer all my questions. Except about caring my skin for the treatments. You are so right it is a mind game!! I have to keep telling myself that I am in control!!
0 -
RMlulu: sorry, I never thanked you for your 3/07 response to my posting. Yes, you were right...I had good time to make my decision and now I'm sure I've made the right one. I'm going for implant reconstruction. My PS said he thinks I'm a good candidate for immediate/one-step which is encouraging! I told one of the nurses that "he probably says that to all his patients" but she said no, she never heard him say that before! So we'll see. If not, then TEs, etc. Rt breast mastectomy slated for Monday, 3/25.
One question for anyone: a nurse at my pre-op said the radioactive stuff used for my SNB could be harmful to pregnant women for up to 24 hours. Was everyone warned about that? That kind of put a damper on my 3 daughters who planned on being at the hospital with me and husband. I certainly wouldn't want to take any chances on them being unknowingly pregnant. But daughter that's in medical field thought that was a little overboard, that the radiation shouldn't be so strong as to be dangerous for them to be in my vicinity. Now everyone is scrambling, trying to make suitable plans for surgery day!
Good luck to everyone having surgery/chemo/rad soon and hoping for a speedy recovery for all!
Nancy
0 -
Nancy, they gave me a pregnancy test before injecting the dye. My husband has a vasectomy, I'm 45 and done with kids. Yet, test still is standard because dye is radioactive. Even had to go to radiology to have the injection. So, take a home pregnancy test beforehand if you don't want any surprises.
0 -
TMM60- the chemo drugs are docetaxel and carboplatin. I'm looking them up now...
0 -
Renee,
Thanks for your reply. However, I'm certainly not concerned about being pregnant...I'm beyond child-bearing years so no issue there. However, I'm wondering just how dangerous this radioactive mat'l is for any female visitors (like my married daughters), just being in the same room with me? They want to be there for me but I don't want to put them in any danger.
Nancy
0 -
Hi all -
4 pages of posts! I can't keep up...I want to first say so glad to read the happy news of clear nodes, and you wonderful strong women making progress to the next stage of treatment. Renee, LOVE the poster. As always it is the waiting that is the worst. I've been offline and in the hospital since Sunday. Back home now. I shot a fever of 102 and my MO said go to the ER and have them check vitals and bloodwork. And viola' ended up admitted and on antibiotics. Can I tell you that was the most distressing out of everything so far? It was a good thing I was there though. My blood pressure dropped dangerously low and I nearly passed out. Scared the crap out of me and my husband. My regular physican upped my blood pressure med to counteract the steriods and it was way too high. I tried to call her today to tell her I'm going back to the minimal dose and its the "B" team. I never made it through. First I was hung up on, then tried to leave a message and it said the mailbox was full. I'm going to start looking for another family doc.
The nurses and doc at the hospital were wonderful and its better to be safe then end up with sepsis. BTW if this happens to you, bring the overnight bag and ear plugs. There is an upside though. No nausea, minimal nose runniess with pink, and normal movements so overall, minimal dry mouth, hardly any chemo side effects. Just the one you want to have happen. It does its job and kills all fast growing cells and you hope and pray you don't get neutropenic!
0 -
I was diagnosed on 1/22/13- a week before my 41st bday. I had a L masectomy with tissue expander. There was micrometastises (0.38) found in my sentinel node. Chemo is strongly recommended-- and I am beyond terrified. I go next week for chemo teaching and I just don't know if I can actually go through with it
0 -
Kobrien, I am on a similar path. This can be really overwhelming! I'm glad you're here for support, and sorry you need to be here. We're getting through this together. What date do you start chemo? I start April 1st. I'm going wig shopping this weekend. I cried last night as I held that wig prescription in my hand! It's all so scary.
We will get through this. We are strong!0 -
I don't have a start date yet- I go for chemo teaching on the 26th. There has been multiple discrepancies with size of tumor- on mammo & u/s- then on MRI they said it was 10cm!! Then when it came out, said it was 2.3. Was told my sentinel node was negative in the OR- then after pathology was told it had micrometastises.. Now told it has all been re sized as bigger.. Waiting for the breast surgeon to call me back today... All this up & down is driving me crazy... I DO NOT want chemo-- I was fine with surgery-- was even willing to have a bilateral masectomy, but my breast surgeon recommended I wait on that- so I only did one.
I am an ER nurse- so I know I only see the bad side of chemo and the worst case scenarios... But I still don't want it and am still trying out how to figure out a way to get out if it.. I have NEVER been this scared in my life!0 -
I don't have a start date yet- I go for chemo teaching on the 26th. There has been multiple discrepancies with size of tumor- on mammo & u/s- then on MRI they said it was 10cm!! Then when it came out, said it was 2.3. Was told my sentinel node was negative in the OR- then after pathology was told it had micrometastises.. Now told it has all been re sized as bigger.. Waiting for the breast surgeon to call me back today... All this up & down is driving me crazy... I DO NOT want chemo-- I was fine with surgery-- was even willing to have a bilateral masectomy, but my breast surgeon recommended I wait on that- so I only did one.
I am an ER nurse- so I know I only see the bad side of chemo and the worst case scenarios... But I still don't want it and am still trying out how to figure out a way to get out if it.. I have NEVER been this scared in my life!0 -
Kobrien, my heart goes out to you. I find the waiting and decisions excruciating! I also was told all clear, then later pathology showed micromet in SLN.
And I was told my tumor was 7cm. After surgery, path report showed large area of dcis, but small idc.
Then, my MO said it was multifocal and gave me the chemo option, which I took. I hope I don't regret it!
I'm sorry you have had such a crazy up and down ride. Sending a big hug!0 -
Just a little update. i had my second chemo infusion on Tuesday, got neulasta yesterday and am doing good so far today. They lowered my dose and i am hoping that is what is making it less difficult. I did have a small allergic reaction during carboplatin but they just stopped it and gave me benedryl and steroids and restarted it. i was there from 9:15 till 4:30. Long day. Was starved!
0 -
The BS just called me- they resized the tumor-- and found it wasn't one tumor but 2. One being 3.5 cm and the second being 1 cm. which is pretty much what the mammo & us said.. So now it's multifocal-- but still considered grade 2- stage 2. I only had a SNB and now they are recommending an AND after chemo-- but she said that's my choice.. I don't feel like I've had any choices here.. There's now way anyone is allowing me to opt out of chemo.. Which is what I don't want to do. I've been crying all week.. It's really starting to get to me.
I've been out of work since 1/25- unable to function and worried about catching something ( I work in a very busy Level 1 ER). My LTD won't be approved till maybe may and I got my last full paycheck today.. I'm worried about finances.. My husband had been lucky to be able to get guys to cover his schedule to be with me ( he's a firefighter/ paramedic and his department is so supportive) but he's going to have to work over time to get some more $$ in here.
We just got married 7-14-2012 and have a blended family totaling 5 kids.. I feel so bad that there so much stress on him too.. He's a wonderful guy.. I don't want to keep crying and venting to him..
To say I am beyond overwhelmed is an understatement and I don't know what to do.. Thanks for listening.
Kerri0 -
Kerri, I have had two appointments with my hospital's oncology social worker/therapist. It's the best time I've spent and was well worth the effort. She understood me better than anyone so far.
While I share your feeling of not wanting to burden people, this is your time to RECEIVE. You will be carried now, but will have your turn doing that for someone else down the road. Many people love to give. Let them.
Keep venting here! You are in a really difficult situation and your feelings are completely understandable. Count me among your supporters0 -
Kobrien -
Hugs. I am so sorry. I was married 8-9-2012 and diagnosed this January. What a way to spend the first year of our marriages! My husband was laid off and I'm the primary paycheck. I have to work through this and I am blessed with a boss and company that set me up to work from home. Its very hard but at least I don't have to do the LTD. Our kids are grown and out of the house otherwise I would be a basketcase. I would defintely reach out for support. It turns out I have 3 co-workers that are BC survivors. One is 20 years out. I talk to them and try to live as normal a life at home. You can't help but cry as this is overwhelming. I actually let my hubby know in advance. "Honey, its a bad day, I'll be crying at somepoint and just need you to hold me."
Chemo brain is a challenge. I find he can be short with me occasionally. I say: 'Honey, you know my brain isn't working at 100% and I'm sorry I am frustrating you, but its not on purpose." I have to be VERY aware of his feelings especially since he's out of work. But I try and turn it postive. He is wonderful man and we are navigating this together as best we can. We will be stronger and closer on the other side.
My prayers are with you and your family.
0 -
Positive Thinking,
Finances are really rough. You are lucky to have a job that has leave pay. i am a private practice therapist and when I dont work i do not get paid. So I have struggled to work and am barely making it. I have had to borrow money from my dad and my fiance has been helping cover me. i was suppossed to meet his family last December and we had been meeting with an IVF doc and working towards marriage and starting a family when I was diagnosed. This has been a real life blow in so many ways.
You are not alone and unfortunately, as it stands now medical debt is the largest path to bankruptcy. I have two more months before Herceptin only and back to work. I can do it one day at a time. Cry when you need to. Just let it out and move on. It is normal.0 -
Kobrien - so sorry that you are under so much stress and uncertainty...ugh cancer!
The mind games that come with the waiting & ups & downs as our BC teams review path from their areas of expertise...it just is the....:((. But we want the best, we want the truth of the condition of our breast/nodes so we can be informed advocates for our health. Breathe!
Is there a breast support group at your cancer center? If so make time to attend..ours has a social worker who speacilizes in cancer...the door is always open and a lifeline!
The center also has meditation and exercise classes which have helped reduce stress level and then there is the bonding with others that are on this unwanted journey.
I read and marked for hubby the Breast Cancer Husband it was a great help to us...
Try to focus on today ... Don't run ahead...no need to rehearse things over and over when you only need to walk that way once.
(((Hug))) those kids...your hubby...celebrate today...laugh! You will be fine ... We will be fine...
We are Warriors! And We will kick c to the curb!0 -
Adavisart - staying in your pocket during chemo...good job Tuesday! May you recovery quickly after each tx
Sending calming positive vibes for healing & full body & mind restoration for all warriors!
My heart and prayers go out to all.0 -
Nancy--sorry for the misunderstanding! I do think that is a little overboard--as if you're a walking radiactive contaminant. As for the injection itself, my husband had to wait in the waiting room while that took place.
0 -
BeHereNow-
I got an appt for tomorrow at 10 with the cancer centers social worker.. Thanks for the idea. I thought about it before and don't know why I didn't reach out.
Kerri0 -
Thank you to everyone here for all of your thoughts & perspectives
0
