Has anyone decided against chemo?

Hi Scared

I opted out 11 months ago and now I am dealing with a recurrance. I will start CMF a milder form of Chemo in January.

Fear is never a good reason to make a decision.

Basic question is, do you want to do everything you can to rid yourself of cancer, or do you want to leave open a barn door for recurrence and possible metastasis? Seems pretty easy to me.

Personally, I chose to fight the cancer with every tool, because I want to live to retire and enjoy the next 20-30 years.

Dear Scared:  The majority of us here have faced those same questions and we DO know what you're going through.  Deciding on tx is a tough part of this voyage.  You have your friends' experiences which were not good, and I'm sure you've been reading everything you can get your hands on about chemo -- maybe too much info, in that we tend to focus on the worst things that can happen, rather than the "not very likely to occur".

Since you live in Toronto, you are probably seeing an onc at either PMH or Sunnybrook.  They have so very much experience, and your onc will listen to your concerns and plan a tx that will have the best outcomes along with the least SE's.  I can appreciate your concern about chemo brain.  Yes, it affects some (not all!) and from my experience, forgetting the right words in a conversation did happen frequently to me.  But I do not think it actually affects your ability to "think" and process, as you would do normally.

As for peripheral neuropathy, there are things you can do to avoid it -- ice mittens and ice socks (or mittens and socks with frozen bags of peas in them) during tx seems to be effective.  You just have to be careful of frostbite!  Your onc or your chemo nurses will be able to advise you about this.

There are no guarantees about any BC treatments -- we do the best we can with the knowledge we have (and that goes for docs and patients alike).  I hope your onc will give you the confidence you need to see this through, and that you will undertake the tx that seems to offer you the very best short- and long-term outcomes.  Please stay in touch and let us know how you're doing.  We'll be thinking of you!

Hugs, Linda

Scared -- Stage 3 and HER2 positive. You read my words, but skipped over the most important ones: leaving a barn door open for metastasis/recurrence. HER2 positive is a viciously aggressive form of breast cancer. Honestly, hon, you don't want to gamble on this one.

Get the statistics from your doctor. Permanent neuropathy? I know 20-30 bc survivors very well, many of whom had a taxane. Their neuropathy, 2 years out, is no worse than some tingling, sometimes. I don't know of anyone with permanent numbness to the point of being unable to take care of themselves.

What you're doing, it's something that many of us do/have done. I was crazy with worry about heart side effects from AC. My oncologist helped me understand that the chances are tiny ... TINY. Yes, it does happen. It's staggeringly more likely to suffer a recurrence from choosing a weaker chemo than one's own pathology indicates, than to suffer from serious side effects. I was very worried about lung damage from radiation therapy. Afraid it might cause lung cancer down the road. But the damage that recurrent or metastatic breast cancer is a FAR more real threat. 

Herceptin related heart damage is also very rare, and is frequently reversible.

Chemobrain isn't even established as a real, discrete side effect. The psychological effects of a breast cancer diagnosis and its attending treatments is FULLY capable of producing the same cognitive effects. Chemobrain is being studied, but it is far more likely that what most people experience is more post-traumatic stress from the cancer diagnosis.

Chemo isn't fun. But few, very few people suffer from permanent side effects. Many people are effectively cured by it (put into long-term remission).

A co-worker of mine chose not to have her lymph nodes removed (they tested positive for cancer) because of the miniscule chance that she might suffer from surgery-related numbness in her hand. She works with a computer. Her cancer has returned ... I don't know if it metastasized. Probably so. She gave into fear.

Based on the probabilities of permanent side effects you fear, you then should also: never take aspirin or ibuprofen, as the chances of a fatal stomach/abdominal bleed could leave you dead or permanently brain-damaged from blood loss; never drive a automobile, as you could get into an accident and suffer paralysis, brain damage, amputation of a limb, disfigurement; never fly in an airplane, as they sometimes crash; never take an antibiotic, because some people have deadly allergic reactions resulting in anaphylaxis, possible death; never eat shellfish, spinach, hamburger, peanuts, etc., since these products have been tainted with E. coli and some people suffered from kidney failure as a result of the infections caused by the bacterium ... don't you understand -- EVERYTHING we do has a risk attached. The benefit of these things outweighs the small risk that attends the activity.

And if you have no other reason, then do it simply because there must be someone on this earth who loves you and would be devastated to lose you.

Scared,

Everyone on this board has had to face this decision or one equally terrifying.  I didn't want to do chemo either until I found out my cancer is triple negative.  It is extremely aggressive and can ONLY be treated with chemo, no follow up drugs like the positive cancers have.  I am about to have my last AC treatment on Christmas Eve.  I know I am one of the extremely lucky ones, but I have honestly had such minor effects from the chemo that I almost feel guilty.  No heart issues, no chemo brain.  I have never missed any work other than the day of treatment.  I have my chemo on Thursdays, work Friday and then rest on Saturday & Sunday.  Monday I'm back at work and doing fine.  In January I start 4 treatments of Taxotere.  I worry a little about the neuropathy because I work with my hands and am on my feet a lot for my job but knowing what I know now, I'm not freaked out about it.  Chemo does suck but not as bad as some of the other unfortunate things that happen in life.  I know that my cancer may come back and metastasize but I will know in my heart that I did everything I could to try to stop that from happening.  I owed it to myself as well as my friends and family. Good luck with your decision.

The only person I know who opted out is dead now.

Chemo is not anywhere NEAR as bad as you imagine.  I've had very few side effects, aside from losing hair.  I'm taking taxotere, carboplatin and herceptin.  

I feel just fine and have been able to do everything I always have.  Everybody is different but there are ways to manage chemo side effects.   Back in the old days chemo was much less tolerable than now.  They have new generations of chemo drugs and new ways to manage side effects. 

Somebody said it above - fear is never a reason to make a decision.

Good luck to you. 

ScaredinToronto,

Many of us here know how scary chemo is, because we went through the same shock you are feeling and we went ahead and sat in that chemo chair to get those infusions.  I had 4 rounds of Taxotere & Cytoxan, finishing up more than 18 months ago.  Two different medical oncologists recommended chemo for me, because of the characteristics of my tumor.  The characteristic that tipped the balance toward chemo was the Oncotype DX score of my tumor, which was 26. That corresponded to a 10-year risk of "distant recurrence" (i.e., risk of metastatic cancer) of 17% if I did not get chemo, even if I did take tamoxifen for 5 years. I am post-menopausal, so I'm on an aromatase inhibitor (Arimidex) instead of tamoxifen.  Aromatase inhibitors are thought to be slightly more effective than tamoxifen in decreasing the recurrence risk of ER+ tumors.

Most of what I've said in the previous paragraph is not relevant to you, though.  You said in a post on a different thread that your tumor is ER negative, PR negative, and HER2 positive.  That means you cannot rely on estrogen blockade (tamoxifen or an aromatase inhibitor) like most of us can.  You also cannot have an Oncotype DX test done on your tumor, because they can only be done on ER+ tumors.

I can't imagine a medical oncologist not recommending chemotherapy in your situation.  Because your tumor does not have ER or PR, your only "ammunition" against recurrence (besides surgery) will be chemotherapy.  Until a few years ago, tumors that overexpressed HER2 (i.e., HER2+ tumors, like yours) offered a really bad prognosis, with high likelihood of recurrence.  Fortunately, the drug "Herceptin" has changed that.  Herceptin is thought to cut the 3-year risk of recurrence in half, but the drug hasn't been around long enough to know what the benefit will be after, say, 10 years.  Herceptin is a fairly mild drug as chemo treatments go; but it would almost certainly be used in conjunction with conventional chemo (such as AC-T).

So, back to your situation...  You estimated the stage of your cancer to be Stage III.  I think you are correct, based on the size ("10 to 12" cm) and the fact that it is "ulcerating".  The American Cancer Society website explains the staging of breast cancer.  That site says a tumor that is greater than 5.0 cm in diameter but has not grown into the skin or chest wall and has not spread to the lymph nodes is Stage II; but a tumor of any size that has spread to skin or chest wall is Stage IIIB even if there are no lymph nodes involved.

Your oncologist has probably given you some information on the risk of recurrence if you do, or do not, get chemotherapy.  So, you probably already know that the risk of recurrence of your tumor is extremely high if you decline chemo. With most ER negative, PR negative, HER2+ tumors, the greatest risk is in the first 2 or 3 years after initial diagnosis and treatment.

The bottom line:  the chances (the probability) of developing long-term or permanent side effects from chemotherapy are much, much lower than the chances that your cancer will return if you do not have chemo.

Please talk this over with your oncologist. 

otter 

Dear scared,

I think of all the decision in this process, you are facing the hardest one.  I was one of those people who had an intermediate range oncotype (27) so it could have gone either way-- In the end, I decided to have chemo-- 4 rounds of AC----

It was so much better than I anticipated--- I am a senior level executive in my organization and I was able to be treated on Fridays and I usually went back to work the following Wednesday-but I worked from home on Monday and Tuesday.  My treatment was done over 8 weeks- so it was over before I knew it.... I never felt "great" right after treatment, but I always felt great just before each treatment.  Your body repairs itself....

 I think all the advice you have gotten here is sound.  And your concerns are valid-but the truth is, the permanent side effects from chemo are very rare.... My last chemo was at the end of Februrary--- I find that I am about 95% "back".... and I think it will take a few more months--but I can feel myself heading to 100%..... I appreciate your concern about "chemo-brain"--- I was not sure if it existed or not-but what I did in preparation was to get really really organized.  I organized my files, made sure I had all critical notes, I never go into a meeting unprepared.... takes a little more work, but gives me some security.  I have always has a fabulous memory-- and I find that i have not lost that at all.... every once in a while my mind feels like it is working a bit "differently" but in some ways, that is a good thing--- I feel like I am a little more creative now--I was very "linear" in my thinking before....

 Bottom line-- you have to  make a decision that will let you sleep at night.  My odds of recurrence are stated at about 8% or lower.... I have decided to live in the 92% and not worry about it, but having the chemo gives me that confidence.

I wish you the best of luck in this decision--we all appreciate how difficult it is.

The point somanywomen has made is very important:  "...as you can see by those of us who chose no-chemo, we took our stats and balanced out the chemo benefits to our particular case....".

In other words, "Has anyone decided against chemo?" is not the relevant question.  Many women decide against chemo when they learn that their cancer is early-stage and their recurrence risk is very low, or when they discover that the benefits of chemo (the reduction in recurrence risk) would not be great enough to counterbalance the chances of long-term side effects of the chemo.

Those of us who chose not to get chemo because we had Stage I cancer and/or our risk of a recurrence was just 8% or 12% or even 20%, are not even in the same ballpark as ScaredinToronto.  Having a 10 to 12 cm tumor that is ER negative, PR negative, and HER2+, and has ulcerated through the skin, puts her at a huge risk.  Those who might be wondering how huge can check this on-line calculator, which does not require registration or login:  http://www.lifemath.net/cancer/breastcancer/therapy/index.php  WARNING:  The results are very scary, so don't go there if you are not feeling strong.

The relevant question is, "Has anyone in my same situation decided against chemo?".  Perhaps if this question was posted on the Stage III forum, the answers would be more useful, because those women were/are facing the same threat.

otter

Hi Scared in Toronto - I know how you feel, it's a tough and scary thing. I was in a grey area and my oncologist gave me the choice.  I was very worried about doing chemo...but I was more worried about looking back down the road and wondering "what if."  I knew in my heart that I needed to do everything I could.  I am also hormone negative and chemo is my only option for treatment aside from surgery and radiation.  Therefore, I opted in and so far it hasn't been too bad.  In the end you have to do what's best for you but really try to look ahead if you can...past the treatment time and think of how you will feel once you know you've completed the treatment. My sister-in-law had endometrial cancer at 47 two years ago (I'm 45) and she went through chemo.  I saw how well she did on it (Taxol and Carboplatin). That helped cement my decision.

I'm from Mississauga, not far from you.  Feel free to send me a PM if you have any questions about my chemo therapy or anything.

All the best!

Sherri 

I'm glad that your visit with the onc and associates went so well.  I have always been happy with PMH and my husband who is currently going through treatment there is pleased with his care too.

A certain degree of fear about treatment is certainly perfectly normal - it would be an odd person indeed who had no fear of cancer treatment.  But it sounds like your fear is debilitating and I think you should try to get some help with that.  There are multiple resources in Toronto.  Willow and Wellspring are not hospital based and I've used both.  Wellspring has drop in support by trained peer counsellors plus a lot of programs you can register for.  Willow is an excellent research resource.   Also PMH has social workers and I used that too.  My radiation onc thought I wasn't dealing well with my first breast cancer and referred me.  I only had a few appointments but I found it quite a help.  Now PMH has that 2nd floor breast centre with books and staffed by volunteers.  I talked with one of them about lymphedema prevention.

What can we do to help you?  I think that there a number of women fairly close geographically and many more by e-mail or phone who would be willing to lend support.

ScaredinToronto - you are a strong person...much stronger than you realize.  I'm glad to see you've reached out and talked to psychiatrist and volunteers.  Again, this is a are great sign of strength. Please don't underestimate yourself.  I'm also glad to hear that ou are considering the chemo. When presented with the option of doing chemo, my onc said let's try one session and regroup in three weeks, which was yesterday, and see where we go from there.  He said I could stop if I couldn't handle it.  Well, if I'm losing my hair after the first round...I'm in for the long haul if I can tolerate it. But I've always known in the back of my head that I could stop at any time.He said any treatments are better than none. So maybe keep that in mind.  Try it to know what you're up against and I think you'll be surprised that it's not as bad as you expect. 

All the best and keep us posted.

((((((hugs))))))

Sherri

PS. "PM" is private message. It's like a private email dialogue.  When you are logged into this site, you'll see a bar across the top Private Messages is located at the far right beside My Favorite Topics. I hope this helps.

Hi. Yes I am considering the same. So far just starting out to w/all this B.S. I saw two surgeons, 1 said I would definitely have to have chemo, the other said, hopefully I'm not mistaken, that if I did a lumpectomy/radiation then no chemo. I see an oncologist on Monday to talk about chemo. I really wonder if all the tests and running around they have us do is a Money Game??  I even had the staff of my first surgeon I saw hound me for my $40/co pay??  So I am also thinking of not undergoing chemo and just doing the lumpectomy(mine is 2.8 cm) and then radiation just to the breast where the tumor is. I feel good at this point why make myself sick w/chemo?

jrlegal....you will really want to get the oncotype test for that decision.

SiT...glad you are feeling better about the whole thing.