Signs that tumor is changing?

hawkvand

So I'm through 3/4 of my AC and am starting to get nervous I guess. I'm being asked a fair amount if I can feel my tumor getting smaller, but I can't say yes for sure. I'm really hoping for a pcr (but i mean, who isn't?). I have 1 more dose of AC left and then 12 of Taxol before my surgery. Should I be feeling a big difference at this point? My main tumor is really easy to feel but my breasts are smaller so it's hard to differentiate between the edges of the tumor and the base of my breast. Maybe it felt lumpier after the last treatment? It's just so hard to tell if things are changing or if I'm imagining it because I want so desperately to feel a change. Has anyone experienced changes later in treatment or had minimal palpable change and still had a decent outcome post surgery?

Beesy_The_Other_One

Hawkvand,

My tumor wasn't large at the time of diagnosis but literally blew up in size within two weeks of diagnosis, to the point where my nipple was being drawn over to the tumor and an MRI showed it invading the nipple. Once I started chemo, I immediately felt what I would describe as a war going on in my breast--I could feel it at all times of day, sometimes more than others--but there was always a fairly large palpable lump where the tumor was. MRI's and ultrasounds showed it getting smaller, but six weeks before surgery it was still there. I remember the morning we were driving to surgery in the dark I could still feel this sensation going on in my breast that I'd been describing for months by this point. If I were still feeling it, surely there still had to be residual tumor, I thought. But the post-surgical pathology report showed not one live cancer cell, but definitely a "tumor bed" where the tumor had been.

At one point during chemo I read that tumors don't always just reduce in size like you'd imagine they would, but they are attacked by the chemo in a way that makes them look like Swiss cheese. You have a lot of chemo to go--there's still time for that pCR, and I'm wishing it for you!

hawkvand

thanks for your response! For some reason I got it in my head that the tumor would completely disappear and I’d be able to feel nothing. I wasn’t able to do any imaging beyond mammogram and ultrasound due to being pregnant so I feel like there are a lot of unknowns for me. They haven’t done any imaging since diagnosis and with covid I don’t know if an ultrasound to check on things is an option. I didn’t even think of the possibility of a “tumor bed”. That’s an interesting thought. I did notice some pain to my main tumor and it’s nice to hear other people experienced that with good results

Beesy_The_Other_One

Hawkvand, first of all, I'm so sorry to hear you are having to go through this while pregnant, though you have a very special extra reason to fight hard. How far along are you? I'm sure they'll be even more careful with you in this crazy time, but I would think they would give you an ultrasound as a check at some point. The good news is that Grade 3 triple negative tumors usually respond well to chemo. I'd encourage you to join other ladies who have or have had triple negative tumors--they'd be a wealth of encouragement. Here's one such thread: Calling all TN's

hawkvand

I’m 31 weeks now. I also have a 3 1/2 year old son. We’re going to induce at 36 so that I can start my taxol. I finally have an appointment with the oncologist in 2 weeks and I’m planning to ask about an ultrasound. They haven’t done much at my other appointments to measure things which seems odd to me. I’m also going to ask her whether knowing I’m brca1 positive will change my treatment and perhaps add carboplatin. I’m not sure why some oncs use it in stage 2b and some don’t but I just want this gone. Thanks for pointing me to the thread. It’s super long and weird to read in reverse but there are a lot of reassuring stories on there.

Legomaster225

Hawkvand, I'm sorry you have to deal with this while pregnant. Praying your induction goes smooth and your precious baby brightens things up for you!

I had a pretty large tumor, and small breasts as well. I also had very cystic and lumpy breasts as it was so I could never really tell much. My tumor never felt like it went away, it may have felt slightly softer if anything. I never had any ultrasounds or MRI's during treatment to see if it was shrinking either. When my tumor was removed with my BMX it still showed a 3.5 cm tumor bed BUT there were very minimal viable cancer cells remaining "Certainly less than 5%" was the exact wording on the pathology report. Not completely PCR but close. So don't lose hope that just because it has not completely melted away that nothing is happening in there. Good things can be happening if if we can't see them! I wish the best for you during the rest of your treatment and with your pregnancy.

hawkvand

thanks so much for the hope! I’m so glad you decided to have a double mastectomy. It would have sucked if they hadn’t caught that.

ducky06

Hey hawkvand!

I just wanted to say hey and give you a shout-out --- I am on Taxol right now in my 9th week so we are in a very similar spot in our chemotherapy- just about exactly half way! And I have been wondering the same as you. (My tumor is quite large, it's "multifocal" and externally measures about 7 cm and I can still feel it there!) They gave me Taxol + AC flipped from the usual order. Anyway I asked my oncologist basically the same question today that you asked and she told me the same thing other posters said, that the fact you can still feel the mass-- even if it's large-- doesn't mean you aren't responding. She said the mass might mostly be dead tissue lbut until surgery they can't really tell if there are live cancer cells remaining or not. We both have a generous amount of chemo left to go so I am hopeful for both of us! They wouldn't give the second half of treatment if most people were expected to respond completely after only one treatment Will be thinking of you and your baby! And holding you close in thought.

hawkvand

thanks so much for your reply! It seems like so many people I’ve spoken to were just so sure that things were smaller and I was so anxious about not being in that group. My MO says she thinks it feels better but I’m pushing for an ultrasound to measure. Are they just monitoring yours by feel? Thanks for the positive thoughts. Baby will be here soon and I’m actually getting excited to meet her