Lousy news from the BS

AnacortesGirl · May 2010

I'm hurting tonight. It'll probably be better in the morning but right now it hurts.

Went to the followup visit with the BS today. After 7 months of chemo and scans that showed normal looking lymph nodes I was expecting something different than what I got. I wasn't expecting a clear path report -- that not expected with ILC er/pr positive tumors and I went into this thing knowing that. But the scans I had were showing progress.

The tumor they took out last week was still 4.9 cm. This was pretty much the original size (not including the 2.8 tumor they took out in my biopsy). But the real kicker was the lypmh nodes. Fourteen of them still had cancer. And they added pleomorphic to my ILC diagnosis. Put it all together with a grade 3 and I feel like sh*t tonight.

The BS talked with my trial onc and apparently the trial onc and my regular onc are going to decide if I need more chemo before I start radiation. I'm sure I won't know the answer to this until my next scheduled appt on May 17th.

Tomorrow will be a new day. I just hope it's better.

karen1956 · May 2010

(((((((((((((((((((HUGS))))))))))))))))))))))))

KerryMac · May 2010

Oh, sh*t Christy. That must be so disappointing. I am so sorry you didn't get better news.

All I can say is I know that ILC respondsbetter to hormones than any other treatment, so you still have some big guns in your arsenal.

I hope today is indeed a better day. Cancer sucks.

Bugs · May 2010

Oh Christy, how disappointing! Kerry is right...you have a lot in your arsenal. AND cancer sucks.

precioustime · May 2010

Christy,

I also had neo Chemo and afterward scans showed "no" more tumors except for one that had shrank 1/4 of it's size in the mediastinal lymph node.

I was even considering no surgery-- which was a joke!

After surgery-- Pathology report showed 2 tumors in rt. breast as well as 12 of 18 positive lymph nodes. This was a shock to BS and Oncologist as well as myself. HOWEVER-- since my surgery which has been 4 months ago and RADS 2 months ago, I don't look at how big the tumors were or how many lymph nodes were affected. Cancer is sneaky and I am at peace knowing that I did all that I could do and the rest, well- I'm leaving in God's hands. I heard someone say the other day that they may have Big problems but they have a God that is Bigger!

Be encouraged-- It will get better!

Loretta

nowords · May 2010

Christy,

I had neo-adj chemo, DD AC x 4. I also was aware that chances of great results were slim 1 to 3% in my case...but I figured I would throw everything at it. The MRI showed great results but after surgery the pathology showed chemo had no effect on my 10cm ILC tumor and I had 7 of 22 nodes...matted etc. The team decided that Taxol was not worth the risk to possible benefits in my case. A PET scan after surgery showed all clear. I then did 25 rad treatments. I was stage 3 also. I just went to my one year oncology appointment and all is clear. I take tamoxifen. Hang in there...and remember that you can get second opinions if you feel unsure of treatment plans. Early stage cancer recurs and ladies are still around 10, 20, 30 years that were stage 3 from the get go. Remember that it really is not an exact science...do everything you can that you feel comfortable with and know that it gets easier to deal with.

jenn3 · May 2010

This disease sucks!!!!! I am so sorry.........

(((HUGS))))

Irishtess · May 2010

Ana: I'm so sorry that your outcome was worse than you had expected. Hang in there, and let us know if we can help.

diana50 · May 2010

ana

i just wanted to offer my support...and hugs....i know all of this crappola sucks....we have your back....i can feel your diisappointment...anger...fear... keep us posted on what happens. we are all praying for each other...every day. try to stay in the moment....not too far ahead of yourself....and know that we are here for you.

diana50

bejuce · May 2010

Christy,

Just wanted to offer my support and send you some online hugs. I too had neo-adjuvant chemo (4 DD A/C followed by 4 Taxotere with daily Tykerb) before my double mastectomy. I had a different tumor than yours, but I still ended up with 11/13 nodes positive at surgery. My oncologist and surgeon said that this can be common - it may be a drug access/delivery issue, as in the tumor was so large (mine was 12 cm, and I had lots of skin thickening and edema, angiolymphatic invasion, you name it) that it was difficult for the drugs to reach the nodes.

In any case, because of my 11/13 nodes positive at surgery, my oncologist and radiation oncologist added Xeloda (a low dose) during radiation. Some studies have shown that Xeloda can boost the radiation given, so I'd ask your doctor about this option. Not sure if it's used for ILC though.

On a positive node, a fellow mom at my girls' school yesterday told me that her mom is a 20-year-+ survivor with a golf ball sized tumor and 14 positive nodes (pre-menopausal). So keep the hope, keep the faith, and be ready for the next fight. Radiation does wonders for local control and you have to believe that surgery did its job and removed all the nasty cells.

Hugs,

Marcia

BTW, I had no side effects from the Xeloda so it should be very tolerable.

kimber3006 · May 2010

I'm so sorry. Kerry had a good point about the hormones. Hope you're feeling better today.

YATCOMW · May 2010

Christy.......

You just have to believe that you will be fine......and fight like hell.

Here I am celebrating six years this month......17 nodes....pleomorphic ILC......8cm by 6cm tumor.....

In my honest opinion...... I would take more chemo because of the pleomorphic.....then rads......but the best defense is going to be an AI........

There are tons of articles that tell you that chemo isn't the best for ILC and even if you don't get a response it doesn't seem to impact the prognosis......most likely because the AI kicks ILC's butt.

Hang in there.......many of us are still doing fine.......believe you will be too.

Group Hug...

Jacqueline

clariceak · May 2010

I am sorry to hear your news. That must have been so disappointing, especially after seeing signs of progress earlier.

Try and take a few days to regroup. It sounds like you have some good resources with 2 oncs and a bs to figure out the best approach to take now.

I have IDC, so not familar with ILC, but it seems like it was wise for you to go the neo-adj route and be able to find out the effectiveness of chemo in your situation. At least your medical team can proceed with that information, and surgery + hormonals will take care of everything soon.

apple · May 2010

hang in there. i failed my first scan after chemo rads and surgery..

did chemo again.. I seem to fine. good luck and big hugs

pupfoster1 · May 2010

Damn it Christy,

I'm sorry things didn't go the way you had hoped. I've said it before, that this BC shit is like being on a roller coaster. Sometimes we are at that top, the next we're on the bottom. But it sounds as though your team is very active in your treatment, and think positive that they're going to find the right "mix" that's going to work for you.

Take care,

Sharon

SpunkyGirl · May 2010

Christy,

I am so sorry to hear your news, but it will get better. Once you've had time to adapt to this news and come up with a game plan, you will be hopeful again. I'm sure that doesn't make dealing with this any easier for you. I'm thinking about you, saying prayers, and sending hugs your way!

Bobbie

Anonymous · May 2010

Oh SH*T AnacortesGirl, I logn on and see your news and feel like I am hurting right along with you. I looks like your docs are staying up on everything. Trust that they will come up with a treatment plan for you and then......

Barb

Anonymous · May 2010

So very sorry for you. Cry

Wish there were words to make it go away.

helena67 · May 2010

I am sorry too....Not what we want to hear, right? But you are still just at the beginning of your treatment. Another course of chemotherapy might be very effective, like Apple indicated. Because now that the main tumor load is gone, after the surgery, whatever microcells are left, if any, can be swept away by the chemo! Also, as Kerry already so rightly pointed out, many breast cancer tumors are very sensitive to hormone therapy. Let your Onc put together a good plan for you.

Hang in, Helena.

AnacortesGirl · May 2010

Thanks so much for the support. The reminders of treatments still to be tried and hearing of similar situations from women who have been there mean a lot.

DH and I kind of went in to hiding for a couple of days so we could absorb it and accept it. Like the BS told me, it is what it is.

My attitude had been that I was going to assume tx was doing it work and that I wasn't going to dwell on the what ifs or worry that results weren't going to be good. So it hit hard when results weren't good. But you know what? It would have hit just as hard if I had been worrying or expecting the worse. So I'm going to keep with my original attitude. Once the plan has been worked out I'm going to resume thinking that it's going to do the job.

So now we are back in the waiting game. Kind of like the way it was during the original dx. Waiting to get the appointment set up with the Seattle onc and then, after talking with her, going back to my regular onc and figuring out the next steps.

But I guess I have to take the findings from my last PET a little more seriously. There were two spots, one on my lung and one on my chest, that the PET was seeing as having activity and the recommendation was a CT scan. Well I had a similar finding on my first PET with a spot on my liver but that has disappeared. Knowing that PETs can be hypersensitive I was going to let me onc decide if he thought it needed to be CT'ed or not. I'm expecting he'll want to follow up based on the results of the path, but, if he doesn't think it necessary then I'm going to insist. I just feel I have to be very careful now.

I really want to do more chemo. I'm sure the AIs will have a positive effect but I'm afraid that they will just block the cancer from activity. Once I'm off of them it will have an opportunity to grow again like it did with my sister. I want to kill the suckers.

helena67 · May 2010

I agree with you - this is a time to be aggressive with treatment. Don't discount hormonal treatment though, it can be quite powerful. By the time you are done with 5 years of AI there will be some other strategy to follow. But first things first, figuring out the next steps. Get good information from your Oncologist, all the ins and outs.

Also important to find a good radiation oncologist if you don't already have one. Take care and take heart that there are many women out there, in similar situations, who are doing fine.

Helena.

redskies · May 2010

Xeloda works for ILC, you might want to ask about adding it. I've seen a lot of new research that found good results even at low doses, and found it works especially well on lymph nodes. SE are strongly related to dosage, so studies showing it works well at low doses are great news!

KerryMac · May 2010

Wasn't there someone who had xeloda with their radiation?? I think I read someone posting that. There is always an option like that.

Glad you have taken the time to digest everything and come out fighting again. I am sure your Onc will have some good options for you when you see him next. Thinking of you.

AnacortesGirl · May 2010

Thanks for the support.

I finally got an appointment with the trial onc this Friday. It was so frustrating -- they had the orders to set it up last Wed but I never heard from them. I had to call on Monday and she says "Oh yes - I have it right here and I was going to call you." Well, it quickly became obvious that she still hadn't set it up because she was going through the calendar looking for an hour time slot. She came back with June 10th!! I don't think so. So then she said she had a couple of 30 minute slots this week. I told her that would be acceptable and got one on Friday that's the last appt for the day so maybe I'll get my hour after all. Not the first time I've had problems with this office.

So between Friday's visit with the trial onc and Monday's visit with my regular onc I hope to have a plan. I'm back to not sleeping and I know it's the stress of waiting and not knowing.

The xeloda sounds interesting so I'll be bringing that up. I've looked for trials using parp inhibitors since they have been sounding very promising with BRCA mutations but I don't think I qualify. All I found was for advanced BC. The taxol seemed to be effective but I really, really don't want that again since I had so many SEs. Or maybe they'll want me to go right to the AIs. I'm sure they'll have some options and good recommendations.

I just wish that I wasn't put back on hold like this. I'm ready to start working a plan.

AnacortesGirl · May 2010

Thanks for the support.

I finally got an appointment with the trial onc this Friday. It was so frustrating -- they had the orders to set it up last Wed but I never heard from them. I had to call on Monday and she says "Oh yes - I have it right here and I was going to call you." Well, it quickly became obvious that she still hadn't set it up because she was going through the calendar looking for an hour time slot. She came back with June 10th!! I don't think so. So then she said she had a couple of 30 minute slots this week. I told her that would be acceptable and got one on Friday that's the last appt for the day so maybe I'll get my hour after all. Not the first time I've had problems with this office.

So between Friday's visit with the trial onc and Monday's visit with my regular onc I hope to have a plan. I'm back to not sleeping and I know it's the stress of waiting and not knowing.

The xeloda sounds interesting so I'll be bringing that up. I've looked for trials using parp inhibitors since they have been sounding very promising with BRCA mutations but I don't think I qualify. All I found was for advanced BC. The taxol seemed to be effective but I really, really don't want that again since I had so many SEs. Or maybe they'll want me to go right to the AIs. I'm sure they'll have some options and good recommendations.

I just wish that I wasn't put back on hold like this. I'm ready to start working a plan.

KerryMac · May 2010

Well, I'm glad you have you have a couple of appointments lined up. I hope you get a plan you are happy with.

Let us know how it goes on Friday!

Lousy news from the BS

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