Starting Chemo in March 2014

Hi Everybody,

Just wanted to share something I was told by my surgeon about imaging modalities and size of tumors, etc. Please chime in Xrayalli or anyone else that knows this as well. 

First, with imaging modalities: I have NOT had surgery yet, so the size of the tumor in my breast is estimated based on the mammogram, the surgeon's physical exam, the MRI, the CT w/contrast, the PET/CT and the ultrasound. Each gave a different size, from 1.8cm to 2.8cm. It was explained to me that the CT (which includes the PET/CT and the CT w/contrast) scan through slice thicknesses of 3mm going top to bottom in my body and then it interpolates the space in between. So tumors could seem smaller in CT because the top and bottom slice that show tumor are adjacent to the next slice that does not show tumor, but there could be a couple millimeters past the end slices that have been interpolated as no tumor when in fact there may be a transitional 1 or 2mm more. So I was told that the MRI might be a more accurate size representation, and of course that was the larger 2.8cm estimate. The surgeon felt it to be about 2.4cm physically and her ultrasound measurements seemed to confirm this, but maybe there were enhanced parts beyond the physical findings that the MRI picked up, in other words- that she can't feel as an edge.. Whatever. Why does this matter? Because with neoadjuvant chemo they keep telling me they'll check on the tumor response midway through and then right before surgery, and if things have shrunk enough it can make the case for lumpectomy instead of mastectomy, or just in general give info as to how I've responded to chemo. BUT I was cautioned that tumor-shrinking response is nice but it varies quite a bit. So how informational is this, then? 

SO, then comes the biology lecture. Chemo and radiation both work by hard-hitting cells that divide fast. The cancer cell's hyperprolific activity is used against them. Okay I got that. But as we stop in a single point in time and look at the edges or boundaries of our tumor (and remember that different imaging modalities report different sizes anyway) what we see might be deceiving: A tumor may look like it hasn't responded because it's still the same size, but in fact it may have had a great response activity-wise (A PET scan would show less activity). Some cells die off right away with a direct hit, but others are still present but heading toward death and still others have lost their ability to produce daughter cells. There are sometimes "enhancing" elements that show up as perhaps the outer tumor cells that were originally choking off the microvasculature of the inner tumor cells (so that the inner ones were hypoxic/dormant/less metabolically active) are suddenly getting more oxygen as the outer ones die off, but they won't for long because now they'll get hit too. I've seen this in other cancer cases, like lung tumors and lymphoma masses. Sometimes it's discouraging to hear the size hasn't changed, but that doesn't always mean lack of response- NOT AT ALL. Seriously, sometimes tumors look like they're being stubborn when in reality they just haven't sloughed off yet!

I didn't get a PET scan (yet?) either, Sinsin. I had a chest CT, an abdominal CT, a brain MRI and a breast MRI.  I am also struggling with depression and anxiety big-time  Taking Zoloft and Xanax and they're not working like before.  I keep thinking it will pass like it always does, but it's been three weeks now and all I do is cry all day long. I have a hair-trigger temper and just snap at everyone and then I hate myself.  I feel like just not getting out of bed these days which is a total 360 from when I started this.  Sending hugs and hoping you feel better -- that we all will soon!

interesting discussion..  I had pet scan after my breast MRI, once we realized I had lymph involvement.

I'm considering an anti depressant as well. I typically take fluexotine (Prozac) two weeks before my period to manage PMDD.  Once chemo started I stopped that since. Y cycle would be mixed up.  Meanwhile I got my period big time right after AC1, then I got it again after AC3, that one didn't last as long.  And this morning I started spotting again, AC4 was last Thursday.  I can't stop crying, I have absolutely no energy and I'm short of breath again.  The Ativan helps, but I'm thinking an anti-d might help too.  I'm  wondering .... Hoping .... That this will get better on taxol??

This sucks.

Jenw4kids- What's your Hgb? I had monster heavy periods about 6 months prior to my diagnosis of breast cancer, so when I first went in to get my power port surgery they realized my RBCs were low. It got even worse because just after I got my first chemo infusion, I began another heavy period. It wiped me out, but also I had symptoms of trouble breathing and getting super winded. The hope was that I'd get tipped into menopause by the chemo, but then I got another period again. This time the doctor gave me tranexamic acid to stop the bleeding, which helped after about 2 doses. And after just having my 3rd chemo, I think maybe, just maybe, the periods are stopped for good. It's really a bummer to be losing blood with a heavy period and having chemo at the same time. It makes the out-of-breath side effect much worse. Hang in there.

Sinsin and jmg58 hang in there too. I'm so sorry you're dealing with depression. I'm having kind of a weird absence of feeling thing go on, and if you or anyone knows about that let me know. Maybe a pre-depression or just some weirdness I have. 

I watched a documentary yesterday about Susan G. Komen and Avon fundraising and where the money goes.  Not good.  The worst part was the Stage 4 ladies and how they feel abandoned.  Dr. Susan Love was talking about how we have no idea what causes most breast cancer and how many gillion things it could be.  I got so wigged out I had to take a Xanax.   How are you ladies handling this HUGE  change in your life?

Yeah, the depression thing blows and the situation doesn't help either. Mine is getting worse again and I am done with my ovaries too.  I want them out. I just popped a damn percocet (leftover from my mastectomy) to see if that would help my mood. I think I have stomach cancer too that we can't find because it's within the lining of the stomach and doesn't show on scans. I think it's in my ovaries and that's why I am having hormonal issues. I just saw my OB b/c I am currently on the never ending period. I was on Epirubicin and Cytoxan and was told that may stop my periods and throw me in early menopause but it didn't. Now with the Taxol I don't expect it make a difference either. My periods have been irregular for awhile now, before I started chemo. My OB can't even prescribe me anything to help with the bleeding because my breast cancer is hormone positive. So, she recommended flax seed oil. Anyone taken that before??

Sinsin- My gyn doesn't want to touch me with a 10' pole either because of the breast cancer, and yet I'm wondering how good it is to be in a estrogen dominant state (heavy periods, 2wks apart) when my breast cancer cells are 95% ER+...  I feel like it would be better to have me on pills to reduce the estrogen! But what do I know..

I plan to talk to my onc tomorrow..and I want to make an appointment with a gynocological oncologist.  I don't think our regular ob/gyns are equipped to handle our questions.  My mo. Was pondering the same thing today...why do we need to wait to start tamoxifen?  Apparently there are some new studies that say it's okay to start it while doing rads...personally, I don't want tamoxifen, I'd rather take my ovaries out.  Just wondering what the timeline is....   ARGH!

Jen, I'm starting rads and an aromatase inhibitor soon. My oncologist said by starting the drug after rads you can know which side effects are from the rads and which are from the drug.

I spoke with my onc ... she said an ooph isn't a blanket recommendation even with 100% ER+ bc.  She said to see the gyn onc after my treatment.  I might not wait, but tamoxifen is a ways off for me so I suppose there isn't a need to make that appointment just yet.  She did have me call my primary who prescribed Prozac - which I had been taking to regulate PMS before my dx.  I hope that kicks in soon. I'm sick of crying! 

Sinsin, it looks like you have a dx, who do you mean?

In happier news, I finally found a wig I like!  Actually it wasn't that hard once I decided to let my mom spend the money.  Gotta love mom!! That just might change my outlook on life too!  Why should the world know i am in treatment?

Ok, I'm off to get back to sleep I hope.

Bad news, jmg. I'm so sorry!

jmg.....I am sorry about your mom.  How old is she and is she in any shape for surgery?   Why now??????  Gosh I will be praying for both of you.  Leah

Txplanner - I feel like you do on the current treatment plans - I would think that a good plan would be 1.  Get the cancer out  - surgery (my MO told me that as of that date I was basically NED)    2.  Block the hormones and start hormone targeted therapy - ie AI and Herceptin in my case 3. Do chemo if necessary to get rogue cells - I know this is a blanket regime and doesn't cover everyone and all cases but it makes sense to me -but I don't think there is any money to be made from new drugs in this regime so a long term test would have difficulty finding financing.  I wish there were options like that offered to us though - I actually asked that question and basically my MO said my insurance wouldn't pay for Herceptin without Chemo so there it is.

Jmg sending lots of positive thoughts and good wishes your Mom's way.