Anyone have experience with Neo-Adjuvant Chemo?

Anonymous

Anyone have experience with Neo-Adjuvant Chemo?

raisan_angels

Hi,

I was suggested to also post this here.

I've met with my oncologist and my BS separately.

Since I am 31 with IDC with at least one node involved. They are recommending Neo-Adjuvant Chemo before surgery. There's very little information about it online. A couple studies but not a whole lot of data. I understand there is potentially a risk of up to 12% that would cause me not to be able to have surgery at all. This concerns me.

Usually,this treatment is done to preserve the breast and be able to have a lumpectomy instead of mastectomy, however this would still not be an option for me I must have a mastectomy and probably still have all lymph nodes removed. I'm struggling to see why this treatment is better for me than immediate mastectomy.

I'm one to look into research prior to making any decisions on my health. I'm concerned that I cannot find a lot of solid research on the topic other than it doesn't seem to make a difference whether chemo is done before or after.

Questions:

1. Did you have Neo-Adjuvant Treatment prior to breast surgery?

2. Why did you have it? Lumpectomy/ Nodes / Something Else?

3. Was it successful or did the breast cancer turn to Mets?

4. If your daughter was given this treatment plan would you feel comfortable suggesting it to her?

5. Did this treatment prevent you from having any surgery after treatment?

6. Did you respond well to Neoadjuvant Chemo Treatment or did you need to stop and have surgery?

7. Are you under 40?

8. I’ve read chemo is not effective and I’m concerned going this route will lessen my chance of survival or increase my chance of Mets if I do not respond to the chemo

Thanks for any feedback.

Spookiesmom

First, Dr Google is not your friend. The net is full of bad, outdated information. Go to reputable sites. Listen to your docs. If you don't like what you hear, get a second opinion.

I am older than you, but did chemo first. 4 a/c, then 1 taxotere. Had severe allergic reaction to it or would have continued to 4. The tumor shrunk nicely with the chemo. I also chose bilateral mastectomy.I had 11 nodes removed. After chemo and surgery I had 32 rads

I am 5 years out from treatment still have my port(my choice) and doing fine.

My daughter is 46. I would strongly recommend she have the same treatment I did, in the order I did,

aterry

Hello raisan_angels, What did your pathology report show? I was diagnosed with triple negative bc and it was grade 3. My medical oncologist, Dr Irie at Dubin Breast Center, NYC, is also a researcher in treatments for tnbc. She and the breast surgeon strongly advised to do neoadjuvant. Doing chemo first shows them whether the tumor responds to the chemo. It also, as you said, can shrink the tumor. My tumor was small so that wasn't the primary reason. Also, I felt that starting chemo first meant that any cancer cells that were on the loose would be targeted by the chemo right away rather than waiting to heal from surgery. If you read around in the forums you'll notice that there is a signature for most posters that shows what/when their diagnosis was and what their treatment was. In the forums you can see who has done neoadjuvant and who has had surgery first. Did you do a search on this site for neoadjuvant? It is discussed a lot. There are many knowledgeable posters who link to excellent articles.

I had a lumpectomy following chemo and then radiation. I'm currently in a clinical trial to ward off a recurrence. I would do the same treatment, in the same order, again. My daughter is 25 and I would want her to be treated in the same way by the same team.

Shellsatthebeach

Hi raisan angels, I too had neo-adjuvant chemo. I went to 2 surgeons for their professional opinions. They both had different ones. I ended up going with the surgeon from Dana Farber who wanted to do the chemo first to shrink down the tumors and cancer in my lymph nodes so she could have the best chance of getting clear margins. My scans had showed my cancer had spread extensively on my left side. The plan worked and the cancer shrunk enough where she removed all the cancer and got clear margins! Because of the extent of my cancer, I had a mastectomy with radiation afterwards, that way any stray cells left over would be zapped.

NotVeryBrave

I'm surprised that you can't find much about NAC online. I would suggest checking out the American Cancer Society or Mayo Clinic websites for info.

There are a number of reasons why NAC is recommended - not only for breast conservation. I would hope that your BS and MO could explain their reasons for wanting it for you. And I'm always a proponent of second or third opinions.

To answer your questions:

I had NAC because it is pretty much the standard of care for HER2+ cancers. It was highly successful and I was lucky enough to have a complete response. Because of my experience, I would absolutely recommend it to my daughter, mother, sister, friend. I was able to have surgery 5 weeks after finishing the 6 rounds. I could not feel the lump after the first round and was able to get all of my doses on schedule. I was 50 when diagnosed. Chemo is generally very successful against the cancers that it's recommended for.

The best way to understand the purpose of chemo is that it is able to go throughout your body and kill any cancer cells - not just those at the site of the tumor. Surgery and/or radiation can only treat the area where the cancer was found.

Most breast cancers are slow growing, but those found in younger women are more likely to be more aggressive. Delaying surgery for chemo first does not increase your risk for metastasis. And it can also inform your doctors of how effective the chemo was on final pathology.

illimae

1. Did you have Neo-Adjuvant Treatment prior to breast surgery? Yes, my bc was ER/HER2 + and aggressive.

2. Why did you have it? Lumpectomy/ Nodes / Something Else? To stop further spread and have lumpectomy.

3. Was it successful or did the breast cancer turn to Mets? I already had Mets but it was successful and reduced my tumor from the size of an egg to just a small group of cells.

4. If your daughter was given this treatment plan would you feel comfortable suggesting it to her? Yes, I wouldn’t call it easy but it worked and chemo has come a long way in recent years.

5. Did this treatment prevent you from having any surgery after treatment? No, I had my lumpectomy as planned and the positive Axillary and supraclavicular nodes were no long visible by ultrasound after chemo.

6. Did you respond well to Neoadjuvant Chemo Treatment or did you need to stop and have surgery? I had a good response and had surgery after chemo as planned, I got to save more of my breast and had a reduction and lift at the same time.

7. Are you under 40? No but close, I was 41 when diagnosed.

8. I've read chemo is not effective and I'm concerned going this route will lessen my chance of survival or increase my chance of Mets if I do not respond to the chemo. I found it successful I’m my case but your oncologist should be able to explain and answer all questions, if not, maybe meet a new one.

Best of luck to you

stephaniebc

i did too -- i think it's pretty standard for tumors above 2cm. i had a complete response, no residual cancer at surgery, and my lumpectomy hardly made a dent as a result.

Traveltext

1. Did you have Neo-Adjuvant Treatment prior to breast surgery?

Yes

2. Why did you have it? Lumpectomy/ Nodes / Something Else?

I had Inflammatory Breast Cancer

3. Was it successful or did the breast cancer turn to Mets?

Successful.

4. If your daughter was given this treatment plan would you feel comfortable suggesting it to her?

Yes (and my son).

5. Did this treatment prevent you from having any surgery after treatment?

No.

6. Did you respond well to Neoadjuvant Chemo Treatment or did you need to stop and have surgery?

Responded pretty well.

7. Are you under 40?

I was 63.

8. I've read chemo is not effective and I'm concerned going this route will lessen my chance of survival or increase my chance of Mets if I do not respond to the chemo.

Without chemo I wouldn't have survived.

Good luck with your decision.

Legomaster225

Raisin Angels, I too had neoadjuvent chemo. Very successful. It reduced my 3.5 cm tumor to just a few rare cells and the lymph node that was biopsied positive prior to chemo was negative at surgery. I was 50 at diagnosis. I had a BMX for various reasons (very small, cystic breasts) two weeks after my last chemo. It was nice to know that the chemo worked well on my cancer. If you have chemo after surgery I don’t think you get that confirmation as clearly. Although it is different for everyone. I would feel comfortable with the same treatment plan for my daughter if I had one. It is not fun or easy but chemo for me was not as bad as I had imagined. I was never nauseous and I am a puker. I was worried about that. They have so many options to treat side effects today. Just keep the communication open with the MO and don’t try to underplay any symptoms you have. Lots of resources here too - and if you don’t find an answer you’re looking just ask! Everyone here shares experiences very well and is very supportive.

VVV

I'm 33 and doing neo-adjuvant right now. One of the things I saw about neoadjuvant vs post surgery is basically that originally, all the studies were done post surgery so they kind of kept doing it that way since a lot of things hinge on having the studies to back up what you're doing. HER2+ has studies for before surgery which is why we're often treated that way. I got the idea that the move is going to before surgery because then you can see the impact that chemo is having on the tumor and possibly make adjustments if necessary to treatment. I can say it was a little concerning to do it before, but about a week after the first treatment, I could tell it was working so it's not so much a concern anymore. Also, as always, don't hesitate to get a second opinion which may give you some peace of mind.

Micmel

Raisan~ I had a 4cm tumor in my left breast that was growing every day it felt like. It hurt and I wanted it out! Like yesterday....after all the meeting of what felt like 100 doctors. It was decided since I was so young that they were going to get aggressive. We already knew that I need heavy chemo...and a mastectomy. (The liver tumor was a surprise to come after one heavy chemo) I started with over all 4 AC(red devil chemo) after the four AC chemos. I had the surgery. The chemo had shrunk to the point to where I couldn't even feel it. Which also meant it was shrinking anything else in its way also! I had the surgery of all of them together at once. When the surgery was done. I was considered NED.... went from their onto 9rounds of Abraxane heavy chemo (sister to taxol) and when I had the scans, it showed it had settled in bones. They think it was always there...but just wasn't recognizable yet through any scans.

So in reality I was stage four de novo, they just didn't know it. I have been metastatic for almost two years exactly... it was a rough road, but I am now doing really well. My last year of scans all showed. No measureable disease and I have been deemed in remission, so it can happen. Just do what the doctors say, ask questions. Take notes. Get copies of everything. And realize. Treatments are a lot different now. My hair has all grown back and I do have a little pain here and there, but it is manageable! Emotionally it's hard.. but turn it around and use that emotion as drive to get through what comes your way. For you, for your family, for everyone you care about. This site helps tremendously, there are so many stage four women that honestly amaze me. They travel, they ride horses, they are amazing mothers. You don't loose everything you are...you just have to conserve energy.... priorities because more important as you go and family is everything. Take one day at a time. Don't listen too much to people who haven't gone through this and if you get angry, it's normal. If you get sad.. that's also very normal. I cry at the opening of a Kmart. I am always so sensitive! Hormones make me cray cray, but somehow you adjust, because we have too! Hugs and support. ~M~

Anonymous

I am in the middle of NAC. Started chemo in Oct '17 and surgery is pending March '18. I had an MRI and UltraSound done a few weeks ago and they were not able to detect my tumor at all, so it's responded very well to chemo. I was 51 when diagnosed. I'd do NAC again. I'd also quit browsing the internet!

Remember, breast cancer is not lethal if all cancer cells remain in the breast. It's only when the cancer cells escape the breast that it can become lethal. So, in order to give us the best chance of survival, if you have a Grade 3 tumor of any type, or if there is evidence that the cancer has already escaped the breast (e.g positive lymph nodes), then they are often opting to give chemo first. That way, they can hopefully kill any cells that have escaped the breast before they become problematic, at the same time that they are shrinking (and neutralizing) the primary tumor(s).

One benefit of NAC is the ability to get a lumpectomy vs mastectomy if the tumor shrinks sufficiently to warrant it, but that is certainly not the primary reason to do NAC.