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Topic: Neo Adjuvant Chemo - Care to Share?

Forum: Just Diagnosed — Discuss next steps, options, and resources.

Posted on: Apr 20, 2017 06:14PM

notanisland wrote:

Finally saw my surgeon yesterday after learning a week ago that my core needle biopsy based on 2 abnormal looking adjacent lesions A & B in left breast and left axilla lymph node on ultrasound are positive for IDC. The invasive tumor in the specimens of both lesions are histologically similar and present in multiple fragments measuring up to 1.0 cm. The specimen from the lymph node shows fragmented core containing metastatic tumor measuring up to 0.8 cm. Histologic features similar to specimens A&B. ER+, PR+, HER2neu-negative

I have dense fibrous breast tissue. Furthermore, my surgeon thinks my BC may fall in the 10% of cancers that are not visible on mammogram or ultrasound until later. The firm mass in my left breast was found by my PCP during a physical exam in September 2015 but an ultrasound at the time showed nothing. My mammogram in 2016 was clean. But during my annual exam with my Gyno on 3/31/17 she felt that the mass had gotten larger and sent me for a mammogram and ultrasound, which led to the core needle biopsy. While the Radiologist biopsied the two adjacent lesions identified on the ultrasound, my surgeon believes that it is actually one tumor due to closeness and similar pathology. She took a physical measure of the palpable lump at 4 X 3.2 cm. During the physical exam, she noted that my left armpit seems fuller than my right, so there may be additional lymph node involvement. If surgery were to take place first, she would remove a large part of my left breast - possibly do a mastectomy - and take a good number of lymph nodes.

Instead, she is sending me to a Medical Oncologist for neo adjuvant chemotherapy. Hopefully, the chemo before surgery can weaken and even destroy the cancer, allowing more conservative options for surgery. I see him on 4/28 and hope that some of you who have had neo adjuvant chemo can tell me what to expect. I'm sure that a lot depends on the Total Body Bone Scan and CT Chest/Abdomen/Pelvic w Contrast that I am having on Monday 4/24, as well as scans that are taken during the neo adjuvant chemo treatment, but anything you can share will be appreciated.

I'm trying to sound clinical and logical but I'm nervous, scared, stressed, numb, and still wishing I could wake up!

P.S. I'm sorry that I haven't posted my diagnosis as a signature, but since there is a question about the size of my tumor(s) and I haven't been staged, I don't really know how to enter data.

Dx 4/12/2017, IDC, Left, 4cm, Stage IIB, Grade 2, ER+/PR+, HER2- Chemotherapy 5/18/2017 AC + T (Taxol)
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Apr 20, 2017 10:40PM - edited Apr 20, 2017 10:52PM by Kicks

Neoadjuvant chemo has long been the SOP for IBC and is becoming more common for other types of BC.

Neoadjuvant chemo is used to shrink the tumor and get better margins so surgery may not be as extensive. For some, there may be a complete response at surgery. Not always though.

Most will do 2 different Chemo neoadjuvant but a few of us don't. I did 4 neoadjuvant DD A/C (Dense Dose Adriamycin/Cytoxan). 2 weeks after last A/C, I had a UMX {Unilateral Mastectomy). 3 weeks after UMX, started 12 weekly adjuvant Taxol. In my case, my Drs never expected to get a complete response - which didn't happen. The goal was to shrink it and get good margins and get it out and then hit with the 2nd Chemo to 'mop up' any cells that mivht be hanging around. IBC is different than other BCs as it forms as a 'nest' or 'bands' without margins so surgery doesn't have very good prognosis without doing Chemo first. Apparently it worked as planned, it had formed a 'lump', shrank and had good margins at surgery. Yes, there was still cancer present (including 19 positive nodes) but that was 7+ yrs ago and still as far as I know today still NED.

To me, it makes sense to get 'it' under better 'control' and get it out. Then hit again with a second round just to be on the 'safe side'.

Besides the full body scans you will probably have an EKG or MUGGA test for heart function before Chemo starts. You may or may not have any Scans during Chemo. Different Drs have different ideas. I had no Scans during Chemo at all - my Dr does not like to do Scans (especially with contrast) unless absolutely necessary so as to not subject your body to the radiation. My Rads Dr did insist on a CT with Contrast though before starting rads so had one the day of last Taxol as was starting rads the next week.

(Added: You can put the info that you have in your Profile and then edit it as more is known. Even a small amount of info can be helpful for writing replies. )

Dx 8/7/2009, IBC, Stage IIIC, 19/19 nodes, ER+/PR-, HER2- Chemotherapy 8/24/2009 AC Surgery 10/20/2009 Lymph node removal: Right; Mastectomy: Right Chemotherapy 11/10/2009 Taxol (paclitaxel) Radiation Therapy 2/3/2010 Breast, Lymph nodes
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Apr 20, 2017 11:52PM notanisland wrote:

Kicks, thank you for describing your experience. Your outcomes are very encouraging and I am so happy for you. I was expecting a much longer treatment time for neo adjutant chemo but I see you had chemotherapy for 2 months, then surgery. I suspect it wasn't longer because the intent was to shrink the cancer and not a complete response. Based on what my surgeon said to me, it seems that her intention is similar.

I also hope that I won't have to take many scans during chemo. It's one of the many questions I will have for my MO next Friday. First I have to get through the scans on Monday and the wait.

So this weekend I'll be sitting my daughter's puppy while she's out of town. He's a rascal and very high maintenance so that should keep me occupied!

I did go back and add what I know of my diagnosis, but forgot to switch from private to public. Now youshould be able to see it. Haven't come up with a signature line yet.

Also found that a number of new topics and threads were posted today with info on neo adjutant chemo that I need to catch up on. And finally found the Search feature so I can locate all messages that touch on the topic. In my panic and desperation I didn't do enough reading on how to use the BCO site properly. I have a lot of bedtime reading - including a bunch of articles sent to me at my request.

Thank you for calming me down (this isn't the first time - you also helped me on my "Just Diagnosed worried about how to tell my daughter" thread) and giving me a daily dose of Hope! Bless you!

Dx 4/12/2017, IDC, Left, 4cm, Stage IIB, Grade 2, ER+/PR+, HER2- Chemotherapy 5/18/2017 AC + T (Taxol)
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Apr 21, 2017 05:16AM BlueKoala wrote:

I had neo-adjuvant chemo because my tumour was large (showed up as 10cm on the MRI!) and I was only young.

By the end of four rounds of dose dense AC we couldn't feel the tumour any more. After twelve rounds of taxol I had a mastectomy and all my lymph nodes removed and there was no cancer left.

The downside to chemo first is that your body isn't as fit for surgery. My surgeon told me that she would have expected one night in hospital after my mastectomy if I had had it before chemo, but that I would probably want two nights post chemo. I have also had a huge amount of trouble with my muscles in my neck and upper back. Ithink I lost lots od muscle tone with chemo, which made my muscles have to work harder to get used to the imbalance.

35 at diagnosis. Complete response to chemo! Dx 3/15/2016, ILC, Right, 6cm+, ER+/PR+, HER2- Chemotherapy 3/28/2016 AC + T (Taxol) Surgery 9/8/2016 Lymph node removal: Underarm/Axillary; Mastectomy: Right Radiation Therapy 10/23/2016 Whole-breast Surgery 6/21/2017 Prophylactic mastectomy: Left Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone), Zoladex (goserelin)
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Apr 21, 2017 12:01PM notanisland wrote:

Blue Koala, thank you for the warning. Like everything else, I wasn't aware of the potential of muscle damage and I'm sorry for the difficulties that you've been through. Have you rehabbed or is it a permanent condition that you have had to readjust to?

My surgeon did tell me to exercise, build stamina and upper body strength. But I wonder, is muscle damage from chemo something that we can prepare for or protect against? Another question for my MO.

Hope you are doing well now

Dx 4/12/2017, IDC, Left, 4cm, Stage IIB, Grade 2, ER+/PR+, HER2- Chemotherapy 5/18/2017 AC + T (Taxol)
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Apr 21, 2017 12:22PM Elastogelgirl wrote:

Hi all, I had my neo-adjuvant surgery yesterday!,,(neo adjuvant-cancer surgery after chemo instead of before). Had my breast and nodal cancer suregery, and a boob lift, and port removal all at once at Stanford. all went well. I had a lumpectomy bilateral breast lift and 10 axilla nodes removed. Pain level and discomfort not bad at all. No drains at all! I think (hope) I saved a lot of nodes with my neo-adjuvant choice. Surgeons were initially talking about 20 plus nodes removal, plus nipple removal last November. I ran the other way! Landed me the chemo first option! no difference in neo-adjuvant outcome we learned. Advantages We got to feel the chemo shrinking my large palpable almond sized nodes down to small peas! I also got to ski all winter thru chemo because I had no surgery to keep me from bounceing boobs and using my nodal arm normally. Very nice to get to see the chemo working like it did.

Stanfords surgeon Dr Amanda Wheeler so far as I can see is a super talented specialist in breast suregery. I interviewed three surgeons! two wanted to remove my nipple and take all the nodes. I kept nipple and a lot of my nodes. I don't have my pathology back yet so not confirmed. Wish me luck for clear margins

I had a Savi Scout instead of a surgical guide wire! Savi scout Can be put in weeks before surgery can do it in your pre surgery mammography and sonogram weeks before hand. Not much pain or discomfort with it. And that surgiacal wire would have been aweful for the waiting hour(s)in pre-op prior to suregery. Ask about savi scout!

Hugs e

I also did cold caps and pre-chemo a starvation mimicking diet! google both do your research!

Ps chemo was way easier than I imagined, actually did not throw up once. I skied a bit too! Most of the side effects are managed with good drugs

Hugs Elastogelgirl Dx 11/4/2016, IDC, Right, 1cm, Stage IIIA, Grade 2, 2/9 nodes, ER+/PR+, HER2- Chemotherapy 11/30/2016 AC + T (Taxol) Surgery 4/19/2017 Lumpectomy: Right; Lymph node removal: Right Radiation Therapy 5/23/2017 Whole-breast: Breast, Lymph nodes Hormonal Therapy 7/20/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Apr 21, 2017 01:54PM notanisland wrote:

elastigelgirl, what an encouraging and positive experience you share! Of course you are much younger and so much more physically fit than I am, but that will serve as motivation for me to work on building my stamina and strength. Thanks too for the suggestions of Savi Scout, Cold Caps and the pre-chemo starvation mimicking diet - I'll research to see what is available to me. How fortunate you received treatment at Stanford!

You're an inspiration. I can't believe you are messaging a day after surgery. I wish you allthe best...starting with clear margins!

Dx 4/12/2017, IDC, Left, 4cm, Stage IIB, Grade 2, ER+/PR+, HER2- Chemotherapy 5/18/2017 AC + T (Taxol)
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Apr 23, 2017 07:16AM BlueKoala wrote:

I am working on building up muscle tone again. I wish I could have done more during chemo to prevent it in the first place!

35 at diagnosis. Complete response to chemo! Dx 3/15/2016, ILC, Right, 6cm+, ER+/PR+, HER2- Chemotherapy 3/28/2016 AC + T (Taxol) Surgery 9/8/2016 Lymph node removal: Underarm/Axillary; Mastectomy: Right Radiation Therapy 10/23/2016 Whole-breast Surgery 6/21/2017 Prophylactic mastectomy: Left Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone), Zoladex (goserelin)
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Apr 23, 2017 02:13PM - edited Apr 23, 2017 02:37PM by notanisland

BlueKoala, That's how I feel about so much. I realize I can't second guess decisions and actions I made/didn't make in the past but it's hard not to go there. Today I'm going back and forth, also nervous about tomorrow. I'll be at the hospital for 4 hrs for Total Body Bone and CT scans. Then another nerve racking wait. I'm trying to occupy myself with dog-sitting my daughter's puppy but my mind isn't cooperating!

Keep working on building back your muscle tone. Remember the joy and relief you must have felt when you learned that neo adjuvant chemo had given you a complete response! YAY

Dx 4/12/2017, IDC, Left, 4cm, Stage IIB, Grade 2, ER+/PR+, HER2- Chemotherapy 5/18/2017 AC + T (Taxol)
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Apr 27, 2017 05:20PM notanisland wrote:

I'm not sure if I should be posting an update to the topic/thread I started on 4/20/17 or if I should be starting a new topic. I recall reading a response from a community member to a newbie that she should stick to one topic so that all her background info was available. Well, sisters and brothers, I'm counting on you to tell me if I'm doing this incorrectly!

To recap a little, I saw my BS for the first time on 4/19. She recommended that I have neo adjuvant chemo to shrink the tumor and hopefully clear the lymph prior to surgery and set up an appt for me to see an MO. She also scheduled a blood test, a Total Body Bone Scan and a CT Chest/Abdomen/Pelvic with contrast. The blood test came back fine with the exception of a high glucose reading, which I had been told to expect because I didn't fast.

The wait until my scans on 4/24 seemed to go on forever. The wait for the results of the scans was tortuous. Already knowing that my BC was not caught early, with a large palpable lump, and biopsies of 2 lesions in my left breast and 1 abnormal looking lymph on my left coming back positive for IDC, I have been a wreck. My anxiety actually made me physically ill - with tightening across my upper chest and abdomen that was not only uncomfortable, but made it difficult to eat and easy to imagine all sorts of things.

This morning my PCP called with the results. (She was also the one who called me with the results of my biopsies). Outside of things I already knew about (fatty liver, osteoarthritis), both the bone scan and CT came back with no evidence of metastatic disease. Hallelujah! Almost immediately, the heaviness in my chest and abdomen started to ease up a little.

One thing I am curious about - my biopsies on the left side axilla lymph and 2 left breast lesions all came back positive with similar histologies. The CT scan comments note the clips that were inserted during biopsy but the CT doesn't seem to have picked up anything in the left lymph area, where I know I have at least 1 positive node. I guess I don't know enough about how CT scans work and what they can/can't pickup. Another question for my MO, who I meet for the first time tomorrow afternoon.

And because I know that there will be many more uneasy, nerve racking waits, I asked my PCP for something to take the edge off my anxiety. She's prescribing buspirone. Anyone familiar with it?

Kicks, Blue Koala and Elastogelgirl (sorry for earlier misspelling of your handle!) - thank you, thank you for being there for me when I was at my most anxious and fearful. I know there will be more days and nights like that for all of us, and I hope that I can be a support to you too. Be well! Lots of Hugs and Thanks!

Dx 4/12/2017, IDC, Left, 4cm, Stage IIB, Grade 2, ER+/PR+, HER2- Chemotherapy 5/18/2017 AC + T (Taxol)
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Apr 27, 2017 06:18PM BellasMomToo wrote:

notanisland: I've been taking buspirone for anxiety for over 15 years. It has worked for me. It is a maintenance drug -- you have to take it consistently -- it is not an 'as needed' drug. (Unless the dosage recommendation has changed in the last 15 years.) One of its side effects is fatigue/feeling tired. For me, the fatigue went away once I adjusted to the drug. The fatigue is not nearly as bad as chemo fatigue.

Dx'd at age 56. Tumor found by my annual mammogram -- cancer can grow fast! Dx 10/6/2016, IDC, Left, 2cm, Grade 2, 0/1 nodes, ER-/PR-, HER2+ (IHC) Dx 10/6/2016, DCIS, Left, Stage 0, ER+/PR- Targeted Therapy 11/1/2016 Herceptin (trastuzumab) Chemotherapy 11/1/2016 Carboplatin (Paraplatin), Taxotere (docetaxel) Targeted Therapy 11/1/2016 Perjeta (pertuzumab) Surgery 3/27/2017 Lymph node removal: Sentinel; Mastectomy: Left
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Apr 27, 2017 08:59PM MinusTwo wrote:

NotanIsland - you did good posting to the same thread. So glad there's no question of mets. Hooray. Please let us know how the MO appointment goes tomorrow. Then you can update your profile with what chemo is decided, etc. It really does seem to get easier once you have the next steps in place.

2/15/11 BMX-DCIS 2SNB clear-TEs; 9/15/11-410gummies; 3/20/13 recurrance-5.5cm,mets to lymphs, Stage IIIB IDC ER/PRneg,HER2+; TCH/Perjeta/Neulasta x6; ALND 9/24/13 1/18 nodes 4.5cm; AC chemo 10/30/13 x3; herceptin again; Rads Feb2014
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Apr 27, 2017 09:38PM notanisland wrote:

BellasMomToo, Thank you for the info on buspirone. My PCP is starting me on a low dose that will gradually increase. She did say that it is a maintenance drug for anxiety, not depression and that if I am suffering from depression I will need to get off it because it will make the depression worse! I'm pretty confident though that what I am going through is anxiety - because the tightness and fullness that I was feeling in my chest and abdomen these past few days have faded away (for the time being) within a few hours of receiving my scan results. My prescription is ready to be picked up, but maybe I won't start taking it just yet.

MinusTwo, Thank you for confirming that I posted correctly and for celebrating my scan results with me! I'll update my profile as soon as I know more, and be back to share my MO visit.

Hope you are both doing well. Lots of Hugs & Thanks

Dx 4/12/2017, IDC, Left, 4cm, Stage IIB, Grade 2, ER+/PR+, HER2- Chemotherapy 5/18/2017 AC + T (Taxol)
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Apr 29, 2017 01:26PM - edited Apr 29, 2017 01:26PM by notanisland

Hi All, It's me back to report what I learned at my first MO visit yesterday afternoon. My doc is one of a group within an Oncology Clinic with its own lab, chemo treatment room and the ability to do some testing on site. I had an EKG and additional blood work done while I was there. Everyone going in and out seemed so normal. No one looked sad or fearful. I was nervous when I arrived but settled down the longer I was there.

I will be receiving neo adjuvant chemo over a span of 20 weeks. First, Adriamycin® (Doxorubicin) and Cytoxan® (Cyclophosamide) for 4 treatments, one every other week for a total 8 weeks. Followed by Taxol® (Paclitaxel), 12 treatments, one a week for 12 weeks. He explained that there is really no difference in recurrence rates between chemo before or after surgery, but that neo adjuvant chemo is done to benefit surgery. In my case, my surgeon would like to see the tumor shrink and give me the option for a lumpectomy.

After surgery, he expects I will do radiation therapy and then go on an anti-estrogen therapy (probably an aromatase inhibitor because I am post menopausal) for at least 5 years. My surgeon had mentioned 10 years, but the MO hesitated and said something to the affect of there being no survival data...I was busily taking notes but stopped and looked at him. He very kindly said not to worry, that 5 years down the road there will be new and better options. Oh PLEASE, I hope so!

I asked him if it was possible to stage and grade my BC. He checked my biopsy results and was surprised that it wasn't done, but do you think that maybe the radiologist realized that the 2 lesions that had been biopsied might actually be a single large tumor? After a physical exam, during which the MO measured the lump at 4cm or slightly larger, noted that I had 1 positive lymph node and that my Total Body Bone Scan and CT Chest/Abdomen/Pelvis came back with no evidence of metastatic disease elsewhere, he gave me a Stage of IIb and Grade 2. While that was better news than I had expected, I don't know if it was reached very scientifically, if you know what I mean. But maybe Stage and Grade are always something of a guessing game?

I brought up my concern regarding the CT, which did not show any inflammation in the area of the positive lymph node. Why not? His answer was that mammograms, ultrasounds, CT scans and MRIs are helpful diagnostic tools but don't tell us everything. My elation over the clean scans somewhat dampened, I could feel the anxiety building up from the pit of my stomach. After all my treatments, how would I be monitored for recurrence since my dense breast tissue makes it so difficult to detect? He said I could do MRIs but that the problem with that is the high percentage of false positives. He felt the best option for me was to make sure I always receive 3-D mammograms (as I haven't always in the past).

Now that I know more about my treatment plan it's time to break the news to my daughter and siblings. I also have a trip to cancel in June - by then I will probably be on my weekly chemo treatments.

On 5/5 I go back to the clinic to meet with the Nurse Practitioner for chemo counseling, make sure all my vaccinations are up to date and ask all the questions that I have about preparing myself for 20 weeks of chemo treatments. That same afternoon I'm scheduled for an Echocardiogram at the hospital next door. On 5/10 I'm back at the hospital for single lumen port insertion. After that my start day will be set and I'll see the MO again before chemo begins. (MO has already told me I will lose my hair and NP said it would start around treatment 3)

In the meantime, I've asked the MO what I can do to stop feeding this cancer. (My ER+ is 100% and PR+ is 70%.) Afterall, I had a total hysterectomy in 1996 (fibroids) so I thought I wasn't producing estrogen anymore. He said that my body still produces both "female" and "male" hormones and has the ability to change testosterone to estrogen! He suggested that one thing I can do is to cut my fat intake by half and bring down my BMI. That reminded me that my BS had also told me that after treatment, it would be important that I not gain weight to help ward off recurrence.

I picked up the prescription for buspirone (5 mg, 2X a day), called in by my PCP, on my way home. I was doing pretty well anxiety-wise, so I didn't start taking it. Still, I didn't get more than 4 hours of sleep and woke up feeling a bit anxious. Now I'm sitting here reading the "How to Use" and "Side Effects," and really weighing the benefit to risk. "When this medication is started symptoms of anxiety may sometimes get worse before they improve. Dizziness, drowsiness, headache, nausea, nervousness, lightheadedness, restlessness, blurred vision, tiredness, and trouble sleeping may occur. Rarely, patients may develop movement disorders...in some cases, these conditions may be permanent." Yikes! Plus, it requires taking at the same times every day, under the same conditions (with or w/o food), takes a month or more to feel the full effects and reacts with a number of OTC meds. I just don't know if I should risk it.

Well, that's my long story, long. I'd love to hear your thoughts and experiences if any of this is familiar. You've taught me so much already and I do appreciate your help and support.

I hope you are all doing well and enjoying your weekend. Lots of Hugs and Thanks


Dx 4/12/2017, IDC, Left, 4cm, Stage IIB, Grade 2, ER+/PR+, HER2- Chemotherapy 5/18/2017 AC + T (Taxol)
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May 22, 2017 01:53AM TWG wrote:

What is the pre-chemo starvation mimicking diet!? I googled it but didn't find what you eat or how you do it. Thanks for any information.

Dx 3/27/2017, IDC, Left, 1cm, Grade 3, 0/3 nodes, ER-/PR+, HER2-
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May 22, 2017 02:55AM Traveltext wrote:

That's a very thorough rundown about what's happened to date and what's in store for you. I can see you're a great planner and I can relate to that! I had neoadjuvant treatment for Stage IIIB Grade 2 bc and had my surgery nearly three years ago. I was assured that nad treatment was as good as ad. It really is important to get the tumor size Down. In my case I had skin inflammation as well.

Good luck with the chemo. Here's a tip. Try to do as much exercise as you can right after each treatment this may sound counterintuitive, but research has shown this makes the infusions more effective.

Have breast & prostate cancer. NED both. More on Male BC

Dx 03/14, IBC, L. 2cm, S IIIB, G 2B, ER+/PR+, HER2- FEC x3, Taxol x3

Mx & 2/23 nodes 07/14

Rads x 33 09/14 and now on Tamox

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