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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 07:14PM

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, ER+/PR+, HER2- Chemotherapy
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Apr 20, 2017 11:40PM - edited Apr 20, 2017 11:52PM 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 8/25/2009 AC Surgery 10/21/2009 Lymph node removal: Right; Mastectomy: Right Chemotherapy 11/11/2009 Taxol (paclitaxel) Radiation Therapy 2/4/2010 Breast, Lymph nodes
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Apr 21, 2017 12:52AM 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, ER+/PR+, HER2- Chemotherapy
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Apr 21, 2017 06:16AM 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 3/29/2016 AC + T (Taxol) Surgery 9/9/2016 Lymph node removal: Underarm/Axillary; Mastectomy: Right Radiation Therapy 10/24/2016 Whole-breast Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy Zoladex (goserelin)
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Apr 21, 2017 01:01PM 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, ER+/PR+, HER2- Chemotherapy
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Apr 21, 2017 01:22PM 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, ER+/PR+, HER2- Chemotherapy 11/30/2016 AC + T (Taxol) Radiation Therapy Whole-breast: Breast, Lymph nodes Surgery 4/20/2017 Lumpectomy: Right; Lymph node removal: Right Hormonal Therapy 7/1/2017 Liquid tamoxifen (Soltamox), Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Apr 21, 2017 02:54PM 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, ER+/PR+, HER2- Chemotherapy
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Apr 23, 2017 08:16AM 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 3/29/2016 AC + T (Taxol) Surgery 9/9/2016 Lymph node removal: Underarm/Axillary; Mastectomy: Right Radiation Therapy 10/24/2016 Whole-breast Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy Zoladex (goserelin)
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18 hours ago - edited 18 hours ago 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, ER+/PR+, HER2- Chemotherapy

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