Considering opting out of chemo

I have a friend who is a 15 year survivor of TNBC. Her treatment at that time was CMF which people kind of refer to as "chemo lite" because it supposedly has fewer side effects. I just wanted to give you that info, not sure what regimen is being recommended for you. I have read of women who were healthy and unhealthy eaters who got BC. No one can really tell for sure. There are women who get chemo who have recurrences and those who don't.

KM:  Echoing the others, of course it is your decision, but with TN, the only systemic medical treatment IS chemo and it generally works well on us. We do not have the benefit of 5 years of homorne therapy, like our ER+ sisters. A low-fat diet and exercise have been shown to reduce the risk of recurrence, too... each thing you do decreases the risk, and I've always felt the more I can throw at this the better. The studies have shown that when TN recurs, it tends to recur distantly. At that point, one is  stage 4. No going back.

No one can say what the future will bring, you just need to make sure you're at peace with your decision no matter what happens.

This is a difficult decision, and you will get all kinds of advice.  I am 60, with a tumor that was 1.7 cm and barely ER+ and ER+, little enough that my surgeon considers me TN.  My onco says "positive is positive" so I am taking Femara.  I decided against chemo after much soul-searching, research and listening to my family and friends' concerns.  I, too, couldn't see taking chemo "just in case" the cancer had entered my bloodstream.  Be sure to consider any other health issues you may have.  I am diabetic and at higher risk for many of the notorious side effects of chemo, especially neuropathy.

 I disagree with those who say it's only four months of your life.  It's bigger than that, there is no way to be sure that you will not be one of the few who have long lasting side effects like neuropathy or alopecia.  I'm pointing this out so that you make a decision based on all the facts.  Yes, chemo is doable for most people.  But not for every single person. And for most people, getting over the cumulative effects of breast cancer, chemo and radiation takes longer than four months.  I am saying this not to discourage someone from doing chemo, but to realize that it's not easy.  And for some people it results in devastating, life-long effects.  You have no way to predetermine whether or not you'll be the one in a hundred, a thousand or a million.

 Consider everything, then make your decision and own it. 

Michelle

Krista..you are asking alot of questions that I don't think anyone really knows the answer for..I wish there were answers..it would be good to know!  There are studies..some say yes to the green tea etc, some say it doesn't matter...I don't know...I had the chemo. 4 ac, 4 t dose dense plus rads because I had a lump...plus I exercise, drink green tea, take a bunch of supplements...on the other hand I also drink wine and eat meat..I guess I don't freak out too much about it.

I'm not sure exactly what you are looking for....remember  we are not doctors here but we do have some experience with cancer.individual experiences..some have no issues with chemo or rads (I didn't)..some do have issues..

I don't think you should avoid chemo (and yes..my opinion only)..because of fear of side effects in the future....what does your onc say?  Did you get a second or third opinion? I guess the fact that you are so young....

Chemo or not chemo is a big controversery here on BCO and I really don't want to get into that...but...really your tumor was not that small...oh well..I'll shut up now.

Hi Krista,

I know you are worried about long term side effects, however they are rare.  They do happen, but when I balanced LTSE's against a swifter re-occurance, I opted for the SE's.  It is not fun, and I was sooooooo scared of chemo, but it goes by fast and it is not as bad as I had imagined.  I get neulasta to pump up my immune system and I have been otherwise healthy.  My onc keeps a close eye on my labs, and so far so good.  I will have my last taxol week after next.  Also, should cancer come back, I will know I did everything in my power to stop it in its tracks.  There are statistics to show chemo is effective against cancer.  You can change your lifestyle too, but on this website, I have heard from super healthy folks and not so healthy folks with cancer in common.  LOL people tell me not to eat sugar as cancer thrives on sugar.  I tell them mine thrives on estrogen and eat all the pie I want too.  This is a difficult time for you, and I wish you the wisdom and courage to make the decision that is right for you.

Paula I have read conflicting things about sugar. Granted too much of it is bad and it adds nothing nutritionally so avoiding (processed sugar) is advisable. Other cells need sugar too. Best to get it from natural sources like fruit.

Also keeping a healthy weight does help us not only because of our cancer diagnosis but to prevent many other diseases and conditions.

http://breastcancer.about.com/od/cancerfightingfoods/a/cancer_sugar_myth.htm
I'm still trying to find a source of information on this from NCI, ACS etc. that I trust more. Many of the sites that do say not to have any refined sugars are sites from a "natural" bias. Granted I too think it's a good idea to avoid.

Note that under nutrition recommendations on Sloan Kettering site do not say not to drink alcohol or eat sugar but limit your intake: http://www.mskcc.org/mskcc/html/92459.cfm

Now I'm going to have a few of those chocolate malted milk balls my husband brought home yesterday… that is if I can still taste them

I advise you make "no regret decisions." Each decision I made I tried to imagine the possible consequences, both good and bad. Then I imagined my future self dealing with those consequences and knowing in my heart that I had no regrets. No one can predict the future, but the peace in knowing that you made the best decisions for yourself with the information you were given is invaluable. My "no regrets decisions" led me to MD Anderson, where I received the most aggressive treatment that I could find. It worked out for me, but if it hadn't, I hope that I, as well as my family would have the peace that we did the very best we could. The "no regrets decision" for you might not be the same as someone else's... Go with your heart.



Brandy

Is a 43% really that different from 23%?  Is 20% worth all of the possible long term side effects? 

I would caution you too about the difference in relative versus absolute risk.  If you go from a 43% risk of recurrence to a 23%, that is NOT a 20% difference. It is a 46% difference/improvement (20 percentage points on 43), which is significant, I'm sure you'd agree.

Kristamom:  It's a horrible place you're in right now.  The hardest thing about cancer is the deicions one has to make. One suggestion: try to imagine yourself taking each of the 2 paths - and imagine yourself 5 or 10 years on.  Where would you have regrets?

kristamoon:  As others have said, it is a personal decision, but I would advise you to use not only your heart and instinct to decide, but also use your head.  Triple negative is a very aggressive type of breast cancer and chemo is really the only thing we have to fight it with.  Eating healthy foods and using green tea can help, I'm sure, but cannot compare with chemotherapy.  I know a lot of people think of chemo as "poison"  but I thought of it as helpful medicine which allowed me to survive.  The cancer is the poison.  Is the benefit worth the risks?  I think so, because the benefit is you are much more likely to survive.

The good news is that triple negative breast cancer responds better to chemo than other types do.  And if you do go through chemo, there are lots of women here who are going through the same and can give you advice with how to deal with any side effects.  Everyone is different and some people have very few side effects.  Good luck to you! 

You may consider traveling to MD Anderson for treatment. There are nutritionists, mental health specialists, (yoga, reiki, laughter yoga, nutrition classes, etc) there is an entire full calendar of classes that you can take concerning cancer and treatments besides/in addition to chemotherapy. I do believe that chemo is like shooting cancer with a shotgun instead of a sharpshooter's rifle. There will be damage to some of your healthy cells in the process. That really sucks, but I was convinced that at this time it is the best way known to treat this disease. I know that before chemo, I had 7 tumors and at least 2 positive lymph nodes and after chemo, at the time of surgery there was no cancer left. The chemo annihilated the cancer. My body is strong now. I bounced right back from chemo. I respect your questioning mind and your thoughtfulness in making this decision. I wish you only the best. I just thought I'd share my experience with MD Anderson and my experience with chemo.

Hi Krista,

I just saw your post and want to wish you the best!!  I saw one small bit of your youtube video, and it sounds like you've really been doing some soul-searching.  We definitely understand the roller coaster you're on.  I do want to correct one thing you said about early menopause though - chemo doesn't necessarily cause permanent menopause.  I was 39 at diagnosis and went into chemopause but now I'm back out of it.  LOL, not sure if that's a good thing or not, but I guess it has its pros and cons!  

Anyway, again - best of luck to you, and stick around!  

Hi Kristamoon--Just watched your video and do want to say that while I respect your decision, I would hope that you would take into consideration what I have to say.  I know it's a really scary time. I did a lot of research before I even went to the oncologist. (Had my surgery 5 days after finding out I had cancer).  Like most of the posters here who are triple neg, I did the chemo and don't regret it one bit. Chemo is THE only thing we have to fight this.

As was explained to me by both my breast surgeon and oncologist, the larger the tumor, the more chance there is that a tiny particle could have broken off & gotten into my bloodstream. (There's a difference between bloodstream & lymph node!) It could be floating around in there and it's not going to show up until it latches onto something & starts growing, as right now they don't have a blood test that will detect such minute pieces of cancerous cells in the blood. (though they are working on it!). Yes, they do check for vascular invasion, but that's only near the area of your tumor. By the time one has the surgery, that tiny particle could well be on its way. My tumor was only 2cm & they both felt that was large enough for a piece to break away.

If that happens, it's going to be harder to detect. One of the things that every study agrees with is that triple neg is a very aggressive & fast growing cancer. It only took 5 weeks for my tiny 'bump' to turn into a 2cm tumor!  Just think how large a tumor growing deep inside you could be in a 3-month period!

That is what the chemo is for. To hunt down & attack any cells that could be in your blood.

 Have you considered going for a second opinion? It has been proven in various studies that Adriamycin can be very hard on the heart--up to 10 yrs later. Not all oncologists will use that drug because of it. I know mine does not--not even for a Stage IV. There are other drugs available that work as well, if not better, than the Adriamycin. My treatment was only 4 rounds of Taxotere & Cytocin, plus radiation, which you won't need. The first round got me good, but then I learned a little trick & after the 2nd rnd, I was questioning whether they had even given me the drugs!  The next two were not bad---some minor side effects. Everyone reacts differently to the chemo and there are different drugs that can be used. We all don't get the same!

Yes, I did lose most of my hair. (I chose not to shave it all off--just cut it really short). My hair was probably my best physical feature---long & very thick. But it has grown back, although not as thick.  The other side effects were short-lived and really not that drastic.

A great many of the people who end up with long lasting side effects usually have other medical problems (i.e. diabetes, arthritis, obesity, etc).  So please keep that in mind too.

 Being that you're from MI, too, (I live in Troy, which is closer to you than Ann Arbor!), you are probably familiar with Karmanos Cancer Center. My oncologist was a former Asst Professor there & keeps up on all the latest studies.  My tumor was smaller than yours, no node involvement. Stats were 20%-30% chance of recurrence w/o chemo; 10%-15% with chemo. And those are based on studies. For me, that 30% is just too high to take a chance on. Not when you have a cancer that grows and spreads that fast. And if it comes back, it will be in an area that will make it harder to detect. I'm not going to find it when it's just a tiny 'bump'.

Also, know that there are places where you can get the nutritional facts and help. Beaumont Hospital (both Troy & Royal Oak) have numerous cancer programs. They have a nutritionist that will work with you. That info and help is there!  Perhaps U of M doesn't do that because they are a much larger hospital and deal in so many other facets? 

As for depleting your immunity---again that's only for a week or less. I took the Nulasta shots and within a few days my white count was back up. There's also a cheaper cost shot that you have to take for 4-5 days, but that too will bring your white count up in about a week. You just have to be careful the week following chemo that you stay away from large crowds or people who might have a cold. It's not a big deal.

As for the green tea....recent studies have shown that even if it could reduce your risk of cancer, that you'd have to drink 5 cups each and every day. Most of the studies I've seen deal with green tea & cancer prevention--not how it effects chances of a recurrence.  Two totally different things!

Eating right and exercising are good for everyone---not just someone who was diagnosed w/cancer. Does it really help to eliminate a recurrence? Not for everyone. And that proof lies right here on these boards. I recall reading about another triple neg survivor. She was young--in her 30's--slender, had always been physically active. She remained active all during her chemo/radiation...running everyday. She described herself as a true 'health nut'. Within a year later, she had mets to the brain and died about 6 months after that. Everything about her seems to have gone against all the 'rules' as to who is at risk for cancer and that food and exercise can prevent a recurrence. Not for everyone. And you don't need to look into studies for that---the proof is here on these boards.

As someone else said, "it's a crapshoot". But as long as there is something out there that I can use to fight against it, I will.  I really hope that you will at least talk to another oncologist that doesn't work at that hospital. Perhaps you may want to look into Karmanos?  I would gladly give you the name of my oncologist if you want to private message me. 

There haven't been a whole lot of studies done on just triple neg. It's an entirely different beast than the receptor positive bc. Please keep that in mind because frankly, if I were to have had a positive receptor, I more than likely would have foregone the chemo since I was node negative.

Hi ToniM! I'm not by any means an expert and I don't go through chemo until starting next week, but if you look at the NCCN guild lines I would think you would definitely fall in the get chemo category. Did you get an Oncotype test

personally I would like to really know the answer to some of all of your guys questions too. I am considering opting out due to the fact my oncologist said to me that at my age and the size and location of my tumor was very rare and not document through the chemo surveys taken. I have a feeling that since they have found the "source" of the production of my cancer (my hormones aka ovaries) they can just remove them since I don't need them anymore and they removed the cancer with bilateral mastectomy. They can do a body cat scan every 6 months to ensure I'm cancer free and if it hasn't spread I can go forth with my reconstruction. If it did then I will reconsider the chemo aspect. At least that's how I seen it. Too many chemicals and not enough evidence to show proof it would extend my expectancy if I have such high cancer genes in my family that can end up anywhere no matter if I have chemo or not.