Starting Chemo March 2015

Beachbum1023

Thanks for the replies Ladies! And we pay big bucks to the MO why? They never seem to have the answers we all desperately want! Or they deny it, like chemo never happened or it leaves us with lifetime side-a-effects. Exhausting!

Jackbirdie

Jumbled- I am so very sorry you have to go through this. You have been through so much already.

Please don't try to be strong. It's like swimming against a rip tide. Let us be strong for you. I'm so glad you checked in. Please, let it out, don't try to be anything but what you are in this minute. Scared, mad, whatever. It's all ok to feel that. And totally understandable.

Sending hugs and mojo. Will be thinking of you until you list again. If you need to rant, come on down!

Again, so so sorry.

Katy

eheinrich

Oh no, Jumbled. I'm so sorry your shit sandwich keeps getting more toppings. We are all here for you - sending you all the positive energy we've got. Please keep us posted.

Trvler

Special: I am kind of hesitant to ask (because I don't want you to feel taken advantage of or anything) but I wanted to get your opinion on the whole taking more nodes thing. The ONLY doctors recommending it are the same set of doctors who fought me continuously about going to NOLA. I had two of two positive nodes with micromets. NOLA BS (surgical oncologist), local second MO and RO also do not recommend it. But that same group of doctors (BS, MO (I hate) and RO) at THAT facility say take more nodes before rads, although the only one I have had any direct conversation was with the MO who said she was checking with the BS and the RO. She responded to me via email. The RO at the new facility explained to me about percentage of nodes + in relationship to how many were taken. All of the doctors who are against think the risk of lymphedema isn't worth it. I don't want to worry all the time but I am just so confused over why all three doctors at one place agree and two other facility's doctors say it's not necessary/recommended. I know it is gray area. I am trying to be a good soldier here and do everything I can but obviously QOL is a big factor, too.

Beachbum1023

Trvler, I am scared shitless about lymphedema as well. I had 5 nodes taken and the QOL issue is always on my mind. Not sure if I should do more or less, and I use my arm non-stop at work. But after chemo, surgery, and rads and being TN I worry non-stop anyways. It's scan month and that is whole different ballgame, waiting! My panic meter is on high right now. Wanting to know but not wanting to know. No wonder I feel sick all the time. And I see the Cardiologist in 2 weeks so that is not helping either. We have enough stress, but trying to make decisions is the hardest part. Do we make the right ones? And who do we believe? Good luck, do the best you can for you. Cheryl

Thanks Special, you always help so much!

SpecialK

jumbled - so sorry, and nobody says you have to be brave - be what you feel.

trvler - gray areas are so hard, right? I have seen on BCO and through experience with friends who have been diagnosed and treated that often groups of docs that work together, either in the same facility or not, tend to have a pat response to a certain set of circumstances. Could be one of the reasons they work together, because they agree on things. So, for the initial group you had contact with - their response is to remove the nodes. The newer docs you have seen, don't feel it is necessary. This puts you in the position of having to choose what you can live with, and who to trust more - either removal of more nodes and the risk of lymphedema, or leaving the nodes intact and risking leaving cancer in place that was not eradicated by chemo, and hoping that rads will do the job. My situation at the time of BMX was that my SNB was declared clear in the operating room, but in the lab 20 ITC (literally, 20 cells) were found. So, I was clinically node negative - most docs would not have removed more nodes and rads might have been recommended. My MO and BS were insistent that ALND be done - my oncological breast surgeon was a pioneer of SNB, he is decidedly not reactionary and his response to this situation was based on my Her2 status. I balked because of the fear of lymphedema, but they really didn't give me much choice. Turned out they were right to recommend the ALND - had a much larger positive node that, according to my BS after the fact, would have had about a 60% chance of being taken care of with chemo/rads based on the 25 year database of his patient population. So, in hindsight, removing more nodes was the right choice, I did not do rads, and I am relieved that I did the additional surgery even though I have lymphedema. The fact that he was so confident that this was necessary was informed by his long experience and his patient pattern. I had bi-lat SNB at the time of BMX and had two nodes removed from the "prophy" side and have LE in that arm as well, but not as severe - so chances are that I would have developed it even without the additional nodes being removed. My philosophy though is that lymphedema will not kill me, but the large cancer in my nodes could have. It was never seen on any imaging - including MRI - but my 2.6cm breast tumor, which was palpable, was missed on mammography too. So, all that, in essence to say that you have to decide which risk scares you more. This is probably not all that helpful with your decision, but I think the distillation of deciding which thing you will lose more sleep over will help make your path more clear.

jumbledbamboo

Thank you Katy, Special K and Eileen. I don't even want to tell my husband. Ridiculous I know. Yes my shit sandwich has lots of meaty toppings! lol

Trvler

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Trvler

Thanks for the info, Special. Of course that is the very situation that I could be up against. I guess I would have done it if my NOLA BS had recommended it and the new MO and RO recommended it. I don't like 'gray areas'. It is so much easier when decisions are obvious. Chemo, mx and rads were fairly easy decisions for me to make. This one, a little harder. But I chose these doctors for a reason and I didn't chose the other team for many reasons. At some point, I have to trust SOMEONE, right?

Trvler

Jumblied, I am sorry you have to deal with that on top of everything else. When is the scan? I totally get not wanting to tell your husband. I felt the same way when I had a clot in my heart that they told me could have been a tumor. Tell him. YOU need the support.

Thanks, Cheryl!

SpecialK

trvler - yes, you have to place your trust - and you left the initial group for valid reasons. I particularly feel like the NOLA surgeon's recommendation carries weight. I know this is trite, but go with your gut.

Jackbirdie

I got the below back in response to my letter to bca (SpecialK led me to them). I have already contacted the hospital and am trying to hold a free public screening of Pink Ribbons, Inc. I have also asked my MOs office, recently connected with the same hospital who hosted Look Good Feel Better, for their support.

It feels good to be doing something, on this first day of Pinktober, in honor of my mother, whose birthday is today. I miss her so. I know she would support me on this. Please wish me luck in convincing the hospital to allow a screening on their premises

Hi Katy,

Thank you so much for your email and your interest in organizing a screening of Pink Ribbons, Inc. in your community. It is quite a coincidence that you mentioned the Look Good Feel Better program because today we launched a campaign targeting the Personal Care Products Council and the American Cancer Society specifically about the chemical laden cosmetic products that they give free to cancer patients as part of the Look Good Feel Better program. Your words were really powerful and deepen our commitment to this issue.

For screening Pink Ribbons, Inc., we have a special agreement with the US distributor to allow our members to screen the film for free. The only requirement is that there is no fundraising component and the event is free. If you choose to organize a screening, I can help you by providing the DVD along with an educational packet (see below) that includes materials and supplies for your screening as well as speaking points to help you facilitate a discussion or just be an informed member of the conversation. We would also be happy to publicize the screening on our website's events page. I am also here to answer any questions you have along the way as you plan your screening. You would need to secure a location, do your own local advertising and coordinate any other things you may want to have at the screening (food, etc.).

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2.Where to send the materials to: _____________________________________________________________________________________________________________________

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Thank you again for your enthusiasm and your efforts to offer your community an alternative to Pinktober!

Sahru Keiser

Program Manager

*Educational Packet includes:

Pink Ribbons, Inc. DVD

Pink Ribbons, Inc. speaking points

10 Think Before You Pink toolkits (which can also be downloaded from our website here)

10 Questions for Conscious Consumer wallet cards

10 TB4UP stickers

10 Cancer Sucks stickers

10 BCAction 25^th Anniversary one-pagers

10 2015 TB4UP Poison Isn't Pretty Campaign Briefs

10 Cancer Sucks buttons

10 Think Before You Pink buttons

5 Should I Have a Mammogram brochures

2 BCAction sign in sheets

1 copy of each factsheet (also available on our website here)

oWhat to Do When Someone You Know Has Been Diagnosed with Breast Cancer

oBreast Cancer Risks: Facts & Myths

oThe Facts and Nothing But the Facts

oWhat You Should Know About Breast Cancer and the Environment

oDuctal Carcinoma In Situ (DCIS)

oHealth is Not Just Healthcare: Inequities in Breast Cancer

oDisparities in Breast Cancer: Through the Breast Cancer Continuum

oBreast Cancer and Fracking

:: Sahru Keiser, MPH ::

Program Manager

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Trvler

It's funny. I felt fine with it after talking to NOLA and to the new place. But that other doctor plays on fear.

Italychick

Allison, what response did you have to chemo? Was all cancer dead, or was there some remaining after the double mastectomy?

Trvler

There was some remaining after the chemo but it was much smaller. And yes, they said there were something called micromets in the nodes. The path in the operating room came back negative for the nodes. But when they got the final report, there were some + cells. They got good margins. I was told 1 mm. Not great. Honestly, I was not reading it in great detail. It makes me nervous. I was going with my doctors recommendation. Apparently, they expect a 'swiss cheese' effect from neoadjuvant chemo and it was exactly that.

SpecialK

jackbirdie - Go girl!!!

Italychick

BB, hope all is going well with you. The next week will hopefully be the hardest, and then you can recover. Personally, I think movement is good, clear out the toxins faster, etc.

Diane, when do you find out results from your MRI?

Eileen, sorry about the fills. Cross off the days on your calendar. How many more do you have to do?

Beachbum102, my eyelashes and eyebrows fell out two months after chemo ended. But now, at 4 months, they are back to normal. I think either these doctors don't know about the side effects because they only do whatever is on a check list, or else they do, but don't tell us because they don't feel the side effects are important. But they are to me.

Jumbledbamboo, so sorry about the eye pupil.

Allison, so you didn't have a complete response to chemo, but you did have a response.

What were the reasonings from the doctors recommending ALND, and what were the reasonings from the doctors recommending against it? I'm analytical (I know, pain in the butt), but when confronted with a decision, I take a piece of paper, list the reasons for and against for each treatment, and then go back and look at it a couple of days later. Usually something stands out for me and I say, that's it, that's what I need to do. Only you can know what you are comfortable doing.

Did NOLA recommend a PET/CT scan, or any other types of scans in the future?

Don't let the doctors panic you. Mull it over, you don't have to go back to the operating room tomorrow.

Which doctor said rads are 60-65% effective for any remaining positive nodes, the NOLA group or the assholes?

Trvler

I was told even before chemo that a complete response to my type of cancer was unlikely. Dr in NOLA said they get better surgical outcomes when they do neoadjuvant chemo. (Another thing the MO here gave me a hard time about). He told me it is becoming more the norm. Yes, definitely had a response. I didn't meet with the doctors recommending FOR except the MO. I met with the her that day and she said she probably would be against it, but said she wanted to talk to the BS. He then told her he was FOR and she then became FOR and the apparently the RO there agreed. So I didn't meet with them. But when I met with BS in NOLA and the RO and the MO at the new place, they all cited a bunch of stats that said to not do it is not likely a big deal. I am not good at memorizing all the stats and figures they throw at me, but at the end of the day, they all thought the risks of the dissection outweighed the risks associated with NOT doing it. I hope that makes sense. The more I think about it, the MO at my hospital that I hate has never been much for throwing anything at me with regards to studies. When I asked her if I would need rads post op, all she did was ask if I had met with the RO yet.

Dr. in NOLA says it's much more important to do radiation and Tamoxifen than node dissection in terms of outcomes.

I didn't post the 60-65% number. Maybe someone else did.

Italychick

Ok, so the doctors you trust said no more nodes, and the doctors you don't trust, first the MO said no, then consulted with the BS and RO and then said yes? Seems contradictory to me. And especially with no details. If people can't give me factual reasons for something, to me that says red flag, they are just following a protocol so they can check off boxes on a list. But I hate that they put doubt back in your head. It's never easy - at the end of the day, we each do what we are comfortable with, and what we won't look back at with regret.

Sorry about the 60-65% number, who knows where I got that from.

ksusan

Jumbled, so sorry

Jackbirdie

the 60% was a number SpecialK referred to in her post above and was only in reference to her Dx, when she was faced with a similar situation. She was careful to say it's very individual. She was just trying to outline a similar decision process she faced to Allison.

eheinrich

I'm not sure how many more fills. We are going slow - I was declared a "tight healer" - which I understood when I was there but now i think it has something to do w/ how rock hard my muscle & stuff is. So 25ml today same as last time. My natural/reduced boob is about a B so I can't imagine I need much filling.

Italychick

Katy ok, got it, sorry for confusing things. I'm probably not helping. I just want to go beat somebody up for making Allison agonize.

Eileen, hugs. I hope it won't be too many more painful fills.

eheinrich

Thanks Theresa, hugs help even through the internet. I'm not sure why but it's all just really getting to me today. I'm so tired...

Italychick

I am completely exhausted today. I can't stand the months of heat we have been having. And I trashed myself exercising this week, trying to prove something to myself I guess. And Herceptin tomorrow and post-chemo mammogram. This scan crap weighs on my mind, it's always there in the background

Trvler

I should add one more thing to the story, Theresa. She called me and I missed her call. She wanted me to set up an appointment with the BS, I assume to 'sell' me on the surgery. I didn't call her back so I never actually spoke to her or the BS. I am going to probably send her an email and tell her I am going in a different direction, doctor wise. She stresses me out EVERY single time I talk to her. I think my decision is made. I want to have another conversation with the NOLA doctor. I gave her his phone number and I want to see if they spoke. He also wanted to hear about my conversation with the new RO. I just needed a day to not think about it. Ha. Also, I like to have my husband in the room when I talk to him. He helps me by being a second set of ears and he remembers everything in a way I can't.

Just an interesting (or maybe not) side note. That same BS recommended a lx with rads when he KNEW I likely had positive nodes because they showed up on the MRI. So it is hard to imagine he could have thought an lx was going to be sufficient, even at that point. Also, HE knew I had 30 year old implants and every single other doctor I spoke with said they had to come out. He said I could radiate them and he could OPERATE and take out the scar tissue if needed. So it seems like multiple surgeries are his thing?

Sorry about all the confusion about the doctors. It is hard for me to follow and I have lived it.

eheinrich

Good luck w/ the mammo Theresa.

Italychick

One word - money. I can't stand doctors that don't look at me as a person. Or they want to meet with you so they can check off a box on a form, cover their asses. I feel like my MO does that sometimes. I heard like ten times if you can't do rads, you need a mastectomy. Then I talked to the breast doctor who said that is overkill, we will monitor, don't let people scare you.

So they probably want to document that they told you what they recommend, and then they can check some box saying patient refused our recommended treatment.

DavisD

Amber I'm so sorry you're having to deal with more shit! I understand how you feel I think, I mentioned it a week ago I think. Can't I just get a thumbs up or "you're doing just fine" instead of being sent to another specialist and more worries?? Hang in there, we're with you!y

jumbledbamboo

Thanks Italy and Allison. I will tell my husband. I see my Neuro-opthamologist on the 9th so then. I just want answers. I am just going to focus on positive things like my recon and not anything else. Although that may get cancelled now, I need to double check. And lets be honest here, it probably fucking will