How do you know the Chemo is working?

jkiss75

How do you know the Chemo is working?

jkiss75

Hi All,

Glad to find this site, I have learned so much just tonight. I am 32 yrs old and was breastfeeding my 19 mo. old DD when I was diagnosed on Oct 16, 2007 with IDC, grade 3, triple negative. On Dec 7, 2007 I had a masectomy of my LB. The tumor was 5cm and 6 nodes were removed and are clear. I am scheduled to start chemo on Jan 3rd, A/C 2wks x4 and Taxol 2wks x4, then 6 weeks rads. 

I am feeling bad tonight after reading every post here that maybe I should have opted for chemo first to see if the tumor would respond and maybe I could have saved my breast. My surgeon thought my decision to go with the Masect was the best choice based on the size of the tumor, but what if it had shrunk? Now I feel like I gave my breast up too soon and how will I have any proof that the A/C & T is even working?

I am just dying on the inside, why can't those damn oncs give you the info, why do you have to go online and practically diagnose yourself. I didn't even realize that I was triple neg until after my surgery and was horrified to understand what it meant. I am currently on the quest to find another onc to get a 2nd opinion, which means traveling to another town.

You know all I wanted to do was have another baby and even that is probably a dream that will never happen. Sorry to vent, but I think I am due for a meltdown.

Thanks, Jenny 

Shirlann

Hi Jenny, don't second guess yourself.  It is done and over.  Can't go back, so that doesn't help you at all.

The GOOD news is that you had no positive nodes.  Hang on to the good news and stop second guessing.  It is done, and I personally would have done exactly what you did.  Sounds like the normal treatment and just what should have been done.  The trickey part is, when they go in and get clear margins, there is not a whole lot of the breast left, anyway.  My daughter-in-law had only DCIS, but her breasts were very small, and the doc said, "by the time I get good margins, there will be nothing much left anyway".  So your decision was just fine.

Now, Triple Negs are kinda unhappy, but the good news is if you get to 2 to 3 years post treatment, the recurrence rate drops off next to nothing, you are almost home free!  So this is the good part.

I am 9 years post treatment, a Triple Neg, no one knew much about it at the time, so no one said much and I was so stupid I thought it was a GOOD THING!

So try not to worry, you will be just fine, and OF COURSE you can have another baby, who in the world told you you couldn't and nurse him/her too.  We have had lots of mothers through the years, and the best I can remember, all went well with all of them.  I remember a star, named, Jillian something, had a double mast 10 years ago and has had two children since.

So put that worry away.  You will do just fine.

Oh, the easiest way to get a second opinion is to collect your original slides, your original mammo's and copies of your records.  (This can be done usually with a signed authorization, call the facility first and ask what they need).  Then, call Sloan-Kettering, MAYO Clinic, Dana Farber, any of the super cancer centers.  Ask them the cost to get your info read over and a new path report.  Then FedEx the whole lot and you will get a new path report and treatment recommendation.  This is much cheaper and they don't need you at all.  Probably did not say much about the triple neg because it is not known until the path report is all done.  I kept my slides and mammos in my garage.  (This is up to you, they ask for them back) but I like them in my possession.  Start a small file, get your path report, keep this info, make copies of things you might forget.  I have forgotten what my Her2neu was, but, I guess it was negative!  Ugh, see, time does this, turns your brain to mush.

But honey, you are doing just fine.  You did not make a mistake with the mast and you did not make a mistake with not doing chemo first.  This is usually done with huge tumors or ones that have spread.  So stop feeling like you did anything wrong, you did not.

Post often, hang in there, and we will help you all we can.

Gentle hugs, Shirlann 

PS:  The chemo is working....... you are making yourself crazy worrying, get some Xanax or Valium and enjoy the holidays, too much thinking going on, sweetie..... 

ravdeb

Jenny,

One thing, like Shirlann, is that you can't go backwards. And besides that, we have to make decisions and just go with it. And, you could have spoken to several doctors and each one of them would have given you a different opinion. In the end, it's just what you think is right and well..you thought this was the best way to go at the time. That makes it the best choice.

You are young and most likely have dense breasts. The advantage to having the mastectomy is that your risk of it recurring is lower AND anything that may not have shown on a mammogram or other scan because it could have been hiding in the dense tissues, is now gone. This is a good thing.

It is good that your lymph nodes are clear but the cancer can travel through the blood and not always through the lymph nodes. So, removing the breast gives you a safer chance of not giving the cancer a chance to travel.

Well, I'm not a doctor..this is just my opinion. I wasn't given the mastectomy option. My tumor was 2 cm. and also no lymph node involvment. I have dense breasts at age 53 and insurance refuses to approve a breast mri for me. So, frankly..you have that worry taken from you.

and now..you can just move on. Get through the treatments (your treatments are what most of us were given) and then just move on. Triple neg is aggressive but so are those chemos. Great chance you will be free of this.

By the way..a chemo buddy of mine had a 5 cm tumor and no node involvement. She did a lumpectomy after chemo and they later found more cancer. She ended up doing the mastectomy anyway. She was 32 years old at the time. She's doing great now.

Be well!

Anonymous

I'm a triple negative Inflammatory breast cancer survivor and celebrated my 4 year anniversary from diagnosis last month.  There is hope and today's treatments are very agressive. 

Don't fret on giving up your breast.  Its just been recently that they have started doing chemo before surgery to shrink the tumor and spare the breast.  My opinion is that you did the right thing to have the breast removed.  It increased your chances of staying recurrence free. 

As you go through treatment and move beyond, you will start to read articles and studies that this chemo wasn't really useful or this thing wasn't the best thing to do.  You will drive yourself crazy with the 'would of, should of's'.  Make the best decision with the information you have at the time and don't look back. 

Remember to keep your eye on the prize....being here 20 years from now to help your DD pick out her wedding dress.  As for being able to have more children.  We have had many happy occasions on this board of women having children even after going through chemo.  I can't imagine why you wouldn't be able to have another baby later.

twink

Hi Jenny,

I suppose it's natural to think the other path would have been the right one to go down.  I've done so much of the same kind of second guessing myself.  Here's my perspective as a woman who did go through neo-adjuvant chemo for a large tumor.  Once it sunk in that the cancer was still in my body I spent many sleepless nights worrying that the chemo was not working.  When the AC didn't seem to be having much of an impact, I decided to go for the bilateral mastectomy but due to scheduling delays, also decided to carry on with Taxotere.  I ended up completing the Taxotere before the surgery and was able to see this chemo dramatically reduce the size of the tumor (from 3.5-4 cm to >2 mm).  Unfortunately, node dissection disclosed micro-mets to three nodes.  These nodes could have been more involved pre-chemo or there could have been more than three nodes involved.  I'll never know.  Nodes weren't palpable at diagnosis and didn't light up on PET but that doesn't mean nodes were free and clear.  Neo-adjuvant chemo worked but not 100% and I'll never know exactly what size the tumor was or how many nodes were involved and to what extent.  Hence, accurate staging is not possible.  It's a double-edged sword...take the chemo first and hopefully see it in action, but, leave the cancer in your body OR take it after the cancer has been surgically removed and hope any remaining cells are whacked by the chemo.  There is no right answer and there's alot of controversy on the subject of staging BC with neoadjuvant chemo.  My suggestion is to stop worrying about the path not taken.  It's history.  You're doing the right thing now and had you chosen the alternative, that would have been right too.  Good luck to you Jenny.

Donna1955

Hi Jenny,

I start chemo on Jan 3rd also, 4 ac every 2 weeks then 4 t every 2 weeks, I am here for you!!!!! I was very upset but I know you can't go back, can't change things must press forward. They didn't get margins on two sides, of coarse one is too close to chest wall, I wanted a masectomy, but can't change that now, so I know how frustrated you feel, seems like they tell you things after the fact but I believe that is because of the constant changes happening in research for triple negative bc.....Please hang in there and we can walk this chemo journey together

Have a great Holiday and please feel free to contact me whenever you need to chat

dlmoo1@yahoo.com

Donna 

jkiss75

Ladies,

Thanks so much for the encouragement! I on the path to a few leads for second opinions and am just waiting for Christmas to get over with. Then I just need to settle on a treatment or be okay with the treatment they want to give and just get on with it.

Now I am on to researching the different chemos and the side effects is enough to scare the crap out of you...it almost feels like you have to pick the lesser of two evils and the hope like hell for the best.

Anyway thanks again...and Donna I will email you so we can chat.

Jenny 

Anonymous

Jenny

Yes, there are side effects from chemo but in the majority of the cases they can now be controlled.  I was not sick on chemo and was able to work full time.  There are a few that get effected in a severe way but that should not be the norm these days.  They have very good anti nausea drugs.

Long term sides can be frightening to read but a good doctor will monitor you constantly and hopefully head off any long lasting severe sides.  I'm 3 years out of chemo/surgery/rads and my long term sides are some joint pains and aches due to arthritis.  I would have gotten the arthritis eventually but it just came a little early.  Its not a show stopper.  My life is great after chemo and rads.  I still do just whatever the heck I want.

Iza

I did neo, then lumpectomy and radiation, and I am very happy with my treatment. BUT I came to find out that it is not for everybody! After I described my treatment and outcome in response to a woman's question here on the boards, she contacted me privately because we live in the same area. We exchanged messages and I highly recommended my breast surgeon, who was the one that had talked me into neoadjuvant chemo and then a lumpectomy (I was leaning toward a mastectomy). This woman made an appointment with him hoping to go the same route. To her surprise (and mine), the same doctor told her that he did not think neoadjuvant chemo was a good idea in her case and he recommended a mastectomy to begin with.

We will never know the reasons, but what I believe is that we need to find a team of doctors that we trust, and then go ahead and trust them. They are the specialists, they do know better. We, the patients, are specialists in the receiving end of the treatments, but the truth of the matter is that breast cancer treatment is way more complicated than it sometimes seems to us.

Watson

Breast cancer is not a cookie cutter disease.  There are so many different factors in deciding treatment.

I had absolutely no problems while doing AC and then taxotere and rads.  I worked full time through out.  Just tired but that can be dealt with.  Happy to report that I am 2.5 years out from triple neg dx and doing great!

Much love,

Watson

kimmie39

Hi, just wanted to chime in here.

I had a lumpectomy in 1995 and 11 yrs later the cancer is back in the same breast and more aggressive than ever. If i could turn back time Id have a mastectomy in a heart beat.

Now I have to have a double mastectomy, and Im stage 4.

There are ups and downs to both options

Kim 

TenderIsOurMight

Often I have wondered if a partial answer to this question, "how do you knew the Chemo is working" lies in one's "feeling" on the chemo itself. I don't' mean one's side effects, nausea, constipation, vomiting, mouth sores.



Rather I mean a deeper sensation which I had: a generalized body sensation of improvement over where I had been. Before cancer, I had deep down fatigue, and a deep bone constant chill, just couldn't put my finger on it, but knew I was badly sick. And sure enough, several months and voila, breast cancer diagnosis.



Similarly, when I started and through my chemotherapy, I noticed aside from the SE's, I started to feel less of the deathly ill feeling, replaced by feeling better. It was truly only after completion of the chemotherapy regimens (AC then Doxetaxol) and on Tamoxifen, then Arimidex that I found myself saying, you know, I actually felt the best when on chemo.



So,, it's a great question. I have read other ladies here at this board also say they felt well (other than for the SE's) the most on chemo. The hormonals remind me of the fatigue, the aches I had prior to getting my diagnosis. I don't believe either that how good I felt on chemo was due to the steroids (which do energize you). No, I believe it was because the chemo was doing it's intended job and destroying those cancer cells, lifting their chemical attractors out of my blood stream, and letting my immune system balance once again lift toward body protection rather than constant cell suppression or fighting.



So...a simple answer to your great question is, if you start feeling better while on your chemo, or shortly after, or even years later recall you felt actually good on chemotherapy, well, this may be a reflection that the chemo was indeed working. Just like they're suppose to.



Wishing you well during the upcoming treatment, and many years of joy with your child and more!

Tender

bobobradley

Hi Jenny,

I was diagnosed with BC on 12/20/06 - when I was 8 months pregnant with my 3rd child.  I was also triple neg and did not realize how "bad" this type was until I started reading about it on the internet.  I did chemo first to shrink my 2.6 cm tumor.  I was able to see the progress of the tumor shrinking but I have to admit it made me very nervous at first going this "route".  I just wanted the tumor out of my body.  One thing I have realized is - even though we all may share a similar diagnosis, we are all "different" and we should be treated as such - as individuals - not as an "average" or a "group" of people.  We all respond differently.  Our BC is unique in each of us. 

I want you to know that I know a girl who was also diagnosed while pregnant and the doctors told her she would NEVER have another baby.  Well, she went on to prove them wrong....she is now only a few weeks away from having her 3rd child! So, see? We can not allow ourselves to get caught up in the "averages" or the "statistics". 

Please feel free to email me to chat further if you would like.  My email is dawnmbradley@bellsouth.net

I wish you well Jenny! It is not always easy to stay strong...especially with a little one to take care of.  We have to rely on eachother for support.  When you feel alone and you have a dark day or night, you need to know there are others out there that feel like you do.  So, please reach out.  I know that I had a little "network" of breast cancer survivors that helped me get through the rough times.

I look forward to hearing from you.  I hope you had a nice holiday!

Dawn

stage IIb, grade 3, triple neg (dx Dec 20, 2006) chemo, lumpectomy and radiation (33 treatments)

jeffntate

The downside of leaving it in is the additional time the tumor has to spread.  Like atomic decay, it's a probability equation that increases the chance of spread the longer it is left in the body.  My wife was triple neg, and the tumor actually grew while she did DD taxotere.  Yes it is nice to know the tumor shrinks but even if you get a pathological complete response, there still is no guarantee it has been totally destroyed if spread elsewhere already.  It's a tradeoff and no human being knows the true answer.  I was personally relieved to know the monster inside had been eradicated from my wife's body.  Hopefully it was taking out before it spread but that is why they do post-op chemo and radiation.  I've read thousands of research papers only to conclude it's all a gave of chance and there is no 100% anything about cancer.  Look forward to things like eating right and exercising which according to papers I read this summer  reduced recurrence by as much as 50%. 

Jeff

Sadie-Rose

Hi Everyone,

I just wanted to offer a different perspective.  As everyone has said, we all respond differently to chemotherapy.  My oncologist and surgeon both wanted me to do chemotherapy before my tumor was removed.  The theory was, if chemo therapy reduced the size of the tumor at all, it was doing its job throughout my body.  I first had AC and my tumor did not change size.  Then I had 6 rounds of taxotere and carboplatin and it reduced in size.  I find comfort in knowing that the chemotherapy did have an impact  I feel lucky that we discovered that the AC combination was not working for me.  It allowed my doctors to stop the AC - one less treatment of that for me and start the TC -two extra doses.  I am four years out from diagnosis, so far so good.

Sadie

Pompa

Hi friends,

Wish everyone good luck,will. Pray for everyone's full recovery..

My name is Pompa Roy.i was diagnosed recently.. going through Chemotherapy now,need 12 chemos,then surgery, then Radiation..This journey is lonely,so tough..the anxiety.

After reading all other posts I feel I am not alone

AdiAri_2018

Hi Jenny, hope you are doing great. I was diagnosed IDC, TN, with a treatment of AC 4/3weeks, plus T 12/12weeks. Surgery to be scheduled after completion of chemo. Like you I'm frustrated with onco. No explanation on the biopsy report, I had to dissect to understand what exactly I was dealing with. If I have questions, his respond is very vague. I'm so frustrated with the medical community overall.

Sorry to rant but I feel no one understands my frustration.

Stay strong, look at the positive and keep living.

VL22

Adi - I’m sorry you’re not happy with your oncologist - it just adds to the anxiety. Your chemoprotocol sounds on point, however, which is good. Can you switch oncologists within the practice?

Believe me, if anyone can get your frustrations it is us here on these threads. Anything needed, support, advice etc, come here.

Good luck and hope your chemo goes smoothly.

AdiAri_2018

Thanks for replying to my post. Actually yesterday I had an encounter with my Onco. I was going for my second Taxol treatment and during the consult I explained to my doctor that the pain I had a bad week due to the pain.

Let me backtrack 2 weeks prior. On my consult before starting mu 2nd treatment the doctor mention that his major concern was my nerve damage and how Taxol would make the pain intolerable. We discussed the meds I have in hand to beat the pain. So, yesterday comes and the first thing I mentioned was the pain came as he described but I had meds in hand and I was able to manage it.

He said ok, lets add an additional pain med with the treatment. Ol, so I head to start my treatment when he shows up saying to me that I was not truthful because I had told him that my level of pain was mild but indicated tobthe nurse it was very hard. Anyway, he comes back with I'm going to shut down the chemo and send to surgery. I couldn't understand but I looked at him an sid NO.! I will continue my chemo and do surgery afterwards. He comes back and says to me : If I take you out of chemotherapy and you refuse surgery you won't be here any longer.

Couldn't believe he was saying that to me, actually is the 3rd time he says that. At the end, he agrees to relieve me from treatment and continue next week. Nothing else to say but I was in tears. Am I dying and he is holding something from me? Why I have to go thru the treatments if nothing is working?

So after calming down and talking with my husband I called the clinic and told them I want a second opinion and possible switch doctors. Now is just waiting for the release. In the meantime I'll play along and continue the treatment.

Thanks for reading,

Adi