Discouraged

Anonymous · February 2014

I'm doing neoadjuvant chemo and I have had three rounds of dose-dense AC. I have one more round to go and then 12 Taxol-Herceptin-Perjeta. I thought I was responding well to the AC. After my first treatment, my onc could no longer feel my swollen lymph nodes, after the second one, he measured the tumor by hand and said it had shrunk by nearly half and gotten softer around the edges. He then ordered a baseline mammo and ultrasound that I got today. I was shocked and disappointed when the imaging showed no change in size. The radiologist said that it was possible that he measured it smaller because of it softening. But how would that explain such a drastic difference in his measurements and what the imaging showed? Or maybe I read the initially CT report wrong? I just don't understand. I'm freaked out that the tumor has started regrowing in the two weeks since the last treatment...

Tomboy · February 2014

i didnt do neoadjuvant chemo, but, mine showed up much bigger than it really was at surgury. you will be okay, though, maybe that bit of tumour that is left, will respond to the other chemo cocktail, i think that is why they do it that way.

Tomboy · February 2014

i cant see the particulars of the molecular phenotype, or receptors that yuou might have. are you er+? etc....

Anonymous · February 2014

Bad, Don't get discouraged. I also had neoadjuvant chemo, and I was told there was no change in my tumors when I had my ultrasound. They can't really tell until they take them out. When I had my surgery, one of the tumors had shrunk down to almost nothing. The other shrunk just a little. Hope this helps. {{gentle hugs}}

Anonymous · February 2014

Sorry, I thought it showed in my sig. I'm triple positive. I haven't had any Herceptin yet - maybe the real shrinkage won't start until after I start that? I'm also Grade 3 and I heard the silver lining of that is that chemo targets fast-growing cells the best.

sheila888 · February 2014

Here is the link for Triple Positive

http://community.breastcancer.org/topic_post?forum...

Good Luck

Sheila

Anonymous · February 2014

Bad, I knew my tumors had shrunk by the way they felt. They were softer and I could feel a change. However, ultrasound said otherwise. I was very discouraged and questioned whether I should do the last chemo. My MO said even though the ultrasound showed no change, there could still be changes that ultrasound couldn't see. He was correct. There was a significant change.

Anonymous · February 2014

SlowDeepBreaths, that's interesting. Was it a change in the composition for you (ie dead cells replacing evil cancer cells)?

Anonymous · February 2014

The ultrasound showed no shrinkage at all, but that wasn't the case. The chemo ate away at the tumors creating holes and dead cells (like swiss cheese). That's why it felt so different. I was really in shock when they told me there was no change after the ultrasound. I knew I felt a change. When you feel them everyday, you know when it's different. My point is imaging isn't an exact science. There are some things it can't see. I only had four treatments. If I had more, I'm sure there would have been an even better response. However, there were reasons I could only have four treatments. Ask your MO if there could be changes that can't be seen on your imaging scans.

Anonymous · February 2014

SlowDeepBreaths, that's exactly what I'm experiencing. I feel that it's shrunk and that the composition is different and my fiancee agrees. That's why today was such an unpleasant surprise. I feel much calmer after reading about your experience. THANK YOU. I will sleep much better tonight.

Anonymous · February 2014

I hope what I experienced is the same for you! Sending good thoughts your way. Feel free to PM me any time.

NinaW · February 2014

Hi there!

I just wanted to chime in quickly because as the daughter of a man who spent his professional life installing and maintaining a broad variety of medical imaging equipment, I thought it might be helpful to share that my understanding is the imaging tests show artifacts that are different from normal tissue. Even though the chemo is working to shrink your tumor, that doesn't mean that the affected tissue just goes back to normal. Imaging like mammograms and ultrasounds can't make a distinction between "active" cancer and dead tumor cells - they can just show you what's not "normal". If you had undergone imaging with contrast for an MRI or a CT/PET, that imaging "might" show decreased uptake, but it also might not, especially if the cells are in the process of actively dying. The contrast picks up activity, but again, it can't absolutely confirm what that activity is, and the interpretation is left up to the radiologist based on their experience in reading the reports.

I hope this offers you some assurance that the chemo is indeed working to eradicate the cancer, and what you're seeing on the imaging reports usually doesn't reflect what's actually going on inside your tumor. I think the only time you might need to be concerned is if the report shows that the area of concern is growing. Trust your doctor and the way you feel, and treat these imaging tests as though they were peeping Toms with bad eyesight :-) Heck, even without neoadjuvant treatment, I'll bet you most of the women here can confirm that pre-surgical imaging tests were significantly different than final pathological tumor size. I know mine was off by more than a half-centimeter, and I had every imaging test in the book (mammo, 3 u/s, 2 MRIs, 2 CT/PETs, and a bone scan).

I don't know why radiologists don't make this clear to patients. It would eliminate a whole lot of worry.

SpecialK · February 2014

nina - excellent and informative post!

Anonymous · February 2014

Nina, thank you so much. I hope your response will provide comfort to many worried women! That's basically what my onc said today - and that's why he measures by hand at every appointment. He assured me it has shrunk quite a bit and that I'll probably feel even more of a dramatic response after the Herceptin comes into the picture. He also says he thinks I have a good chance of being one of the 30% that has a complete pathologic response. My problem was that I was assuming that the imaging tests were the gold standard when that is clearly not the case!

Oncearunneralwaysarunner · February 2014

Hi Bad at Usernames,

I wanted to give you a bit more hope as to what Herceptin can do by sharing my story with you. Keep in mind that our bodies are all different and respond to treatment differently but Herceptin is a wonder drug as far as I'm concerned. I had FEC-D chemo and started Herceptin with my second D (taxotere), I'm triple positive. I went from having a lump that could be felt and that had been shrinking based on physical examination, to having a pre-surgery MRI five days after that first taxotere/Herceptin treatment which showed no sign of cancer. I had a pathologically complete response based on the tissue taken out at surgery. I was shocked of such a drastic response after one treatment.

Nina has provided the best description on the limitations of imaging technology I have seen. I knew that there were limitations to each method but now it's really clear to me as to what those limitations are. Thanks Nina!

Hoping your treatments go well and that you get that PCR!

Anonymous · March 2014

Oncearunneralwaysarunner, that was AMAZING how well Herceptin worked for you. I can't wait to start it! All of this gives me a lot of hope. THANK YOU to everyone for talking me off the ledge.

Discouraged

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