neoadjuvant chemotherapy and staging
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I had neo-adjuvant as well and had almost a complete response. Unfortunately I had s butcher for a surgeon. Even tho I had only a 7mm tumor left, the $&@$ took 8 inches off my breast due to calcifications, that were found to be benign. And rather than ask me or discuss it with me, she just ripped it all out. To make matters worse she didn't feel it warranted a discussion at the post op. I had no idea she had done what she had. I had to read it in the pathology report, that I had to request! I am so angry. The so called team I had, just dropped the ball. I was so upset and rather than have anyone talk me down i was ignored. While I waited to talk to the surgeon no one bothered to tell me that the tissue continues to die. So today I am left with a hard mutilated tit. And to make it all worse, neoadjuvant and complete response means nothing to the doctors treatment. Radiation is dependent on tumor size when you present and they assume you had lymph node involvement even tho in my case imaging did not find any nodes affected. But hey since radiation costs $20k a week why would they think otherwise? How convenient for them. So in my case neoadjuvant therapy only complicated my treatment and did not save my breast. I hate all doctors and the money grabbing corporate hospitals.
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It was brought up on another thread about breast pain or site of tumor pain while on neo adjuvent chemo. I have been having a little breast pain in the lump area but thought it was because chemo was changing the tumor or it was shrinking. I will have a scan after my next chemo so I will find out for sure, but did any of you have pain in cancer area and have the cancer shrink? Or does it mean it is growing? I can't feel my lump, but was never able to as it is in deep and in the middle.
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Thank you, that is what I needed to hear. I will find out for sure in a couple of weeks.
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BKJ66. I also had pain at the tumor site during neoadjuvant. The dr said many women report this. He called it the cancer cells dying. sounds like your tx is kicking the BC s butt! Libraylil
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Hi girls,
I was supposed to start the neo-adjuvant chemo tomorrow but it got delayed till all tests results are available. Reading all your posts are so promissing, I think I feel better now since I was concerned about not getting surgery right away.
Thanks for the positive information!
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Baza my dr told me the are not so much concerned with treating the breast. The neoadjuvant starts killing off any critters that might have escaped. Those are more critical.. While i wanted the cancer out I did want to wait about 6 to 8 weeks which it would have been with surgery scheduling and recovery. Good luck and keep us posted. Libraylil
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So glad someone started this thread! I am in week 5 of neoadjuvant chemo with Taxotere, Carboplatin, and Herceptin. Hair is gone (finally shaved it 2 days after it started falling out - so glad it is summer!) and otherwise it is pretty tolerable.
I actually had a neg mammogram - wasn't due for a routine one until September. But I had found the LN myself in my axilla, which was evaluated by ultrasound at the time of the mammogram. That got the needle biopsy first and found poorly differentiated ductal BC. That means aggressive. The MRI (breast) and PEM (PET/CT of breast) found a 1.5cm tumor that was then biopsied and found the same thing. I had the PET/CT of my whole body to make sure there wasn't anything hiding anywhere and had MRI of my head for the same reason. All that was done within 10 days and I got a port. Started chemo 10 days after the first path results on my LN. Pretty amazing. Hooray - It's only in my LN!
So I was pretty happy to realize that the aggressive tumors respond the most to chemo. I am having lots of breast pain - at the site of the tumor, but elsewhere also (and on the other side too...glad I am planning on double mastectomy, cause that makes me anxious). What I am wondering is whether that pain gets less as chemo goes along?? Also did anyone have pain in LN that were not known to be involved?
Also - for those who did chemo after surgery as well as neoadjuvant chemo, what was the reasoning?
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This is the advice I received from the dietician and the naturopath who work with our oncology office (a rare set up.) Just wanted to share! Of course, it is a good idea to tell your oncologist if you decide to take any supplements.
Supplements - 1500mg calcium per day, Vitamin D3 2000 IU daily (keep your bones strong). L- Glutamine (a tasteless white powder available at most health food/supplement stores) 10grams daily mixed in juice, water, or milk to keep away the neuropathy. Magnesium 250mg daily to help the bones also.
Good multivitamin daily. A good omega 3 supplement twice daily
B complex daily (in addition to the multivitamin to help your nerves)
Food - limit carbohydrates, eat lots of "good fats" - 3 tablespoons of Extra Virgin olive oil a day, nuts, avocado, etc.
Get approximately 80 grams of protein per day. (I eat Omega 3 eggs, mozarella and feta cheeses, a vegetable based protein drink, and lots of walnuts, almonds, and pecans)
See the book "The Pink Ribbon Diet" or information on the Mediterranean diet for more info.
I recommend the website lotsahelpinghands.com to set up a calendar if people want to do things for you, or bring you food.
I also take two generic zyrtec the morning of my chemo to keep down the histamine reaction to chemo.
I asked to start a beta blocker (metoprolol) in hopes that it would reduce my risk of heart problems from the herceptin. My oncologist agreed. I take 50mg long acting. There is a trial on this right now.
Get some "Nuun" or similar low sugar rehydration tablets and drink one of these a day - get a total of 2 Liters of water minimum per day.
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Thank you hillck! I am starting round #3/6 next Thursday so I am hopeful that I continue to see changes. I have noticed less pain, but it is difficult to have faith that the chemo is doing its job sometimes.
Any idea how long the wait is from round #6 to surgery?
Anyone know how to get rid of the stuff that keeps happening at the end of my posts?
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Started neo adjuvant therapy on 9-30.....long story short, tumor is a little over 2 cm....my oncologist ordered by Oncotype before surgery, which, at the time, I wasn't too sure about. Anyway, the result came back at 25. I had surgery schedule for 10-06 but when the oncotype score came back at 25, my BS and my oncologist recommended chemo first. Not so much to shrink the tumor, but as a few of you said, to get to any "rogue" cells that may have escaped. They didn't want me waiting 6-8 weeks for chemo. So very glad I found this thread....it's wonderful to read all the encouraging remarks. They did give me the option to have surgery first, but I felt it was more important to have the chemo first to reduce my risk of recurrence in the future. So, basically, it was the oncotype score that determined my course of treatment of neo-adjuvant therapy.
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This thread has been helpful to me. I am also having neoadjuvant chemo and I started weekly taxol on 9/7. I like the idea of watching the tumor shrink to know whether or not the chemo was working. My MO said that surgery would be easier whether i have a lumpectomy or mastectomy. My biggest concern is killing any stray cancer cells that are floating around so starting chemo right away made sense to me.
I had an MRI after 3 weeks and it showed that the tumor had not grown. I was hoping to hear that it had shrunk but it is still early. The nurse told me that often the tumor dies and turns to scar tissue instead of shrinking. That would also be a good result.
I hope all of you who have posted on this thread are doing well. Big hugs.
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I am so envy to hear everyone who responds well to neoadjuvant. I finished 3 of 6 TAC for neoadjuvant. The ultrasound control found the tumor size increased from 2.2 to 2.8cm. I can't tell any change by touching it. The doctor wasn't sure and I had MRI done and waiting for the results to come tomorrow. I am very scared now. I am facing the decision if the tumor is still growing under chemo. The doctor mentioned changing chemo regimens. Please give me some suggestion.
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I too had neoadjuvant chemotherapy and my MO said that my tumors (by palpation) were not shrinking. She said to stay the course with the chemo regimen, which was TC x 6. I was starting to become frustrated because she wasn't even going to order an ultrasound to see if there was any actual response. So, after my fourth round of TC, my surgeon ordered the ultasound and the tumors were actually responding......smaller, softer, flatter. ER/PR+ tumors don't always respond well to chemotherapy, as do other types of breast cancers, say TN. Hang in there! Depending on the MRI, you may have to switch chemo regimens, but like my docs said initially to me, probably around treatment #3 too......its' too early. I'm glad that you are getting the MRI. Please keep us posted!
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Dear Wildrumara, thank you for your info. Just came back from my doctor. MRI shows the tumor does become smaller. Now I am happy
and can stick to the original plan which is to finish the rest 3 sections of TAC, then to have the surgery. Have a good weekend! 0 -
I was disappointed that my tumor did not completely disappear. The onc explained that it doesn t always shrink like a balloon deflating, but many times sort of like Swiss cheese. Pathology showed that 65 percent of the cells were dead. The lymph node invasion was dead fibrous tissue.
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Hi there. Starting neo chemo at the end of March. Glad to see the positive results on this page. Makes me feel better about the whole plan.
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>I was diagnosed with stage 2 on oct 8. Around that time, I had a needle biopsy of a lymph node and that too tested positive. It didnt show up on pet and it wasnt enlarged, radiologist just want to be sure because it looked a little suspicious on us. anyway, I am also doing neoadjuvant chemo and am onto my fourth round of ac then taxol. When I feel my lump I do not notice a difference. However, my oncologist felt it and said that it has shrunk.. I still don't feel a difference. My thing is, she has not mentioned any sort of other test to check on size besides feeling it. Is that weird? Should I ask her for an ultrasound or MRI, or should I just trust her. I am 31 and want to be the most proactive and aggressive with my treatment as can be, to ensure the less chances of recurrence. My parents say I should just trust her and its her job, but I am scared and want to know chemo is working. If it isn't working to the best, I can change chemo regimen. Am I being silly? Should I just trust her? Is it normal to have tests during chemo to see if tumor is really shrinking? Can someone here offer me any advice?
Also they tested my positive lymph node for her2 status because when I got tumor biopsy they never tested her2 status...... Was told I am her2- .. Does anyone know if this would be accurate being that it was from lymph node not tumor?. I know my bs is very reputable, and i should trust her methods, I guess I am just scared and want most effective treatment..so if by chance I was her2 + I would not be getting herceptin since I was told I am her2 negative ... Somebody please help me0 -
I began neo chemotherapy on august 4th with 4xa/c dd and the 4x taxol dd. After my second ac, Onco sent me for ultrasound and the tumor had actually grown on a/c. Switched to taxol and had immediate response. Ended up with 6 dd taxols and 3 useless a/c. Taxol sucked! Anyway, I had bmx on December 17th and got a call from my bs on Friday with pathology results. I had residual cancer and 3 positive nodes. She also stated that the tumor looked like Swiss cheese instead of a melted ice cube. Not sure what is in store as my bs expected the cancer to be dead and it wasn't. Scared and depressed. Cry a lot. I do know that I would do neo chemotherapy again knowing what I know now. Just wish I had insisted on more aggressive treatment and a pet scan before surgery. Maybe they would have done more chemotherapy. I don't know.
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Tracy, had similar response. After 3 AC my cancer progressed and went to Taxol with a immediate response. Will have surgery in early January and am anxious on what the path report will show.
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Hi All,
I too had neo adjuvant up to August of this year. EC and Tax. This is stiill not routine in the Uk.
my tumour was large IDC E/R 8/8. On EC I was told there was a 'disappointing reponse from the chemo oncologist. I was then switched to TAX (4 in total). The lump did not disappear, but rather softenend. there was a disagreement between the chemo onc and the BS about response. The BS said in the end the response was 'excelllent'. I was left a little confused. My BS eventually explained that actually palpating/observing the lump was a more accurate indicator of reponse than over reliance of technology. She said that the clinical examination was just as if not more important than repeated scans and ultrasounds. She was pleased so I guessed I should be. I had 4 positive nodes and whether the cancer was killed off in them I still don't know. I am still deeply traumatised by it all and have yet to look at my final path report. I had an MX and 15 rads and have just had my 1st NED.
Christmas greetings to all from accross the pond.
WS
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Hi WinterSocks, Your case sounds very similar to mine. I have just been diagnosed (Dec 18). DCI,grade 3, stage 3, lymph involvement and triple neg on the receptors. I am just going through some more test and starting neo adj on the Jan 23rd. So very afraid. I am 51 and had a clear mammo on Aug 27 and now have a 4.5 cm in my left breast and now can feel it under my arm just since the biopsy. Was scheduled for surgery on the 8th but changed programs completely to a cancer center close to home. The delay in treatment came from the holidays. Everybody was on vacation and I finally left and changed course directly with a new program. Thought maybe I could come to you with some questions as this goes along since it seems we are being treated somewhat alike. I know we are all different and you all seem to know so much more but I am learning everyday as much as I can retain. I too, live in a rural area. I take from some of your conversations, that walking helps with the pain/soreness? Kinda, jumped in late
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I wish I had seen Shari's post in november.
I ended up having to "order" my own ultrasound to compare how the neoadjuvent chemo was working. Noone else seemed to think I needed it.
I did have the ultrasound, 4 out of 6 cycles in, and the initial tumor and involved nodes had shrunk in HALF!
That was nice to see and know.I had a new mass blossom and that is why neoadj chemo was stopped and surgery moved up.
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Hey Seattle mama,
Glad to see you responded to me... I appreciate it.. Still haven't gotten ultrasound but on a good note, saw my breast surgeon yesterday for checkup and to discuss surgery and she hadn't seen me since original diagnosis in the beginning of October and when she felt my tumor this time she was so excited and happy and was telling me that the difference was like night and day and that it was soooo much better...that made me feel great.. I am having my ultrasound and MRI the day I finish chemo... (March 1st..) but I feel ok about all of this.. Usually see my oncologist who also feels tumor only.. Still trying to rest my head around this, with no ultrasound or imaging but it is good to know they feel a difference and don't feel anything new going on... Guess I won't pressure for imaging... What do you think?0 -
I didn't see my BS during my entire first chemo run. Oncologist only. And he kept checking and feeling. I ordered the ultrasound because I wanted to know the chemo was working. That ultrasound I ordered showed it was working on initial tumor and nodes, and no reaction from new mass (back then deemed benign).
I brought the 'new mass' growing to his attention and he still put it off. He finally ordered another ultrasound and that's what put the wheels in motion for surgery.
All I am saying is, I don't like the "touchy""feely" diagnosing - I want to see and want the docs to see what is going on instead of presuming anything.
BTW, both initial and the other new mass were very fast growing. I had symptoms from the first, 3 weeks before I went in. The new mass, after remaining stable/unchanged from 3 chemo treatments, blossomed after the 4th - took about 2 weeks to reach 9cm.
Wishing you all the best
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Making me nervous.. Was new mass in same breast...or opposite?
All I can say is that I can ask about ultrasound but both onc and bs seem to notice measurable shrinkage.. BS was ecstatic yesterday...
I hate the whole lets touch and measure where I read here others have had multiple imaging done to check their tumors... But I don't see oncologist for another few weeks.... Maybe then I will mention it....thanks for input...
It's crazy new mass can grow on chemo at all... This disease profounds and astounds me in the worst way. I hate it.0 -
I don't know if it helps you shari but I felt actually very secure in the hands of my oncologist. It was as if he was very accurate in what he felt, no hesitation. And I was also told I shouldn't panic if the midway ultrasound showed no change - it could be scar tissue. The only real answer to my concern would be the pathology report after surgery (which I'm having this Friday). My situation was opposite - I thought there was a change in the beginning but is was only after the 3rd/4th round onc seemed to be certain it had gone.
What about now - do you feel any channge yourself? I figure when 2 seperate persons agree it has shrunk it must have. I also had positive nodes and they didn't do a new pathology report or anything - just assume it's the same cell type as the original tumor.
That being said you should stick to your own gut feeling. Is it panic or a true concern which leads you to wanting more "proof" with imaging?0 -
It's just panic and wanting to know all I can know about this tumor... I do feel shrinkage but not to the extent that trained hands feel... I know what u mean about path report as well.. I am nervouse about my post chemo path report.. But just assuming it will be better than first except more detailed because they will be removing tumor....
I see oncologist more than bs at this moment so when bs felt tumor it was first time since original diagnosis( before chemo) so her excitement and noticeable observation on tumor being like night and day was great because she hadn't felt the difference. I see oncologist for exam every three weeks and so her noticing change is not as dramatic because I guess she is feeling it more often..
But true, if they both feel something I suppose its true... Thanks for feedback
Good luck on ur surgery new direction... I understand the stress of not having that as well.. It's as if you just don't know everything about ur situation until the surgery is done .
Pre chemo should just make everything better though.0 -
I felt like it HAD to work because allthough they said they would change course if it didn't my feeling was a "now or never" feeling. It's strange to have finished all chemo treatments. Not that I miss the side effects or anything but you feel like, that was it. Any cells in foreign regions should now be dead or else...
I had surgery yesterday. It went well. I'm home again. Not much pain, actually nothing when the area isn't moved. So far so good. Worried about the results but they HAVE to be good...0 -
I agree I worry about the surgery and the path results, but I think it has to be good as well.. It has to be! If its shrinking the tumor, it has to be killing the little buggers that may have escaped!
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Let me know how things goes shari. I'm suddenly off the chemo-train. It's very strange. What seemed to last forever just suddenly came to an end.
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