Choosing No chemo?

Eleni

Hi,

I'm dx for the second time with triple negative BC. I had the operation, 1.9cm, no nodes involved. I had radiation and now they're talking about chemo.

What are your experiences with triple negative BC? Has anyone opted not to do the chemo? It was hell the first time. I feel I want to be normal and there's no normal anymore. They told me 69% chance I won't get metastases, the chemo will bring this percentage to 85%.

Thank you

emmalee

I am aghast at the statistics for chemotherapy.  It has a 1.5% success rate at 5-year survivial for breast cancer but some cancer centers will still push that chemotherapy, regardless of its failure rate.  Not only that but chemotherapy and/or radiation are the cause of death in 60% of people that accept it.  They often die from malnutrition and septicemia (blood poisoning).  Your life has a pricetag on it, $300,000 to $1,000,000, and the cancer industry cares more about that than about your health.  Proceed with caution, my friend.  Look into the Gerson Therapy folder for natural approaches to curing breast cancer without the chemotherapy.  There is a lot of discussion going on there on safer alternative strategies that use no chemotherapy and good luck.

Jomama2

Bumping up....You might want to post in the triple negative forum if you don't receive good answeres from this one. (I'm neither triple negative nor did I do chemo, so don't have an answer)

suzieq60

emmalee - please support your post with actual studies that show only a 1.5% sucess rate for chemo and also post the studies that show Gerson actually works.

peggy_j

Eleni, sorry you're going through this.  I agree that the TN forum may be your best bet. I don't have TN and didn't have chemo, so I can't speak from experience, but the numbers you quote show that the risk of mets as being cut in half, from 31% to 15%. My understanding is that many patients choose chemo even when the expected "benefit" is less. Of  course, each patient needs to decide what's best for them. Good luck with your decision.

emmalee, yes, there are no guarantees with chemo (or with anything in cancerland, not even alternative Tx), but the numbers you quote are much lower than anything I've read. Can you share your source of data? Cancermath.net can lets you compare different chemo therapies (including no chemo) and most of their estimates are much higher than what you quote. FWIW, my MO firmly dis-recommended chemo for me, so there are docs who aren't part of the cancer-industrial complex.

Eleni

Thank you so much for replying. I had decided against chemo, until I read all the horror stories about the mets. That made me reconsider my option.

It'd have been much easier if my doctor had said: you do it. Now they left the decision up to me and it's so difficult.

I can't find anywhere information about how many patients don't get mets.

Eleni

Thank you so much for replying. I had decided against chemo, until I read all the horror stories about the mets. That made me reconsider my option.

It'd have been much easier if my doctor had said: you do it. Now they left the decision up to me and it's so difficult.

I can't find anywhere information about how many patients don't get mets.

peggy_j

It'd have been much easier if my doctor had said: you do it. Now they left the decision up to me and it's so difficult.

I understand. Based on my biopsy (and my age, being under 50) every doc I saw said that I'd likely need chemo or else be in the grey zone. I was really dreading having to decide. My DH said sometimes in these grey zones, medical decisions are made based on the patient's (or doc's) philosophy about medical treatment. i.e. some people want to "do everything they can" while others don't.  Some people want the Tx with the longest track-record, some want the latest and greatest. There's no right or wrong. A counselor told me it's extremely difficult to make decisions in the face of so much uncertainty.  She said the ideal goal is to be content with the decision regardless of the outcome. If you choose chemo and don't have a recurrence, how will you feel? If you pass on chemo and later have mets, how will you feel? etc.   Not sure if more info is helpful, but some members got a 2nd or even 3rd opinion on whether to do chemo. Sometimes there are docs at universities that may have more specialized knowledge; if that's the case for TN, it might be worth a consultation, even if there's a bit of a drive.  And...I don't know if this helpful or not, but I believe there used to be thread in the Stage IV forum where other patients could pose questions. This may or may not be helpful, but just wanted to share that option. The decision making process is a very difficult aspect of BC. I wish you well as you consider your options and make the right decision for you. (((hugs)))

Mardibra

60% die from chemo/radiation?  Where did that stat come from?

Letlet

Mardibra, I was just going to ask the same thing....what a high stat.

Mardibra

Letlet - made up is my guess.

AlaskaAngel

Chemotherapy benefits most those who are considered most likely to recur in the first 5 years. If I had known that I would not have done chemotherapy, since I was in the group least likely to benefit. But health care providers who provide chemotherapy don't explain that, and many of them either don't grasp that themselves or are in denial about that.

About a half-dozen years ago, an online discussion among oncs indicated that just under 20% of those breast cancer patients who receive chemotherapy benefit from it. There are those whose chemo happens to "match" their cancer and deals with it, and those for whom it does not. There are those who never needed chemo at all because surgery and/or rads does the trick, or perhaps subsequent hormonal therapy does the trick and the chemo was a complete waste of time, money and suffering. And scientifically speaking, there is also the group for whom the carcinogenic substances used for chemotherapy actually can cause further cancer -- not just "late" cancers like bone cancers, but continued breast cancer.

The practice in the past has been focused on "saving" as many as possible early on. Now that chemotherapy is being used for earlier and earlier stage patients, practitioners have been carried along with that tide whether it makes numerical sense or not. Where is the benefit analysis that would show whether the breaking point at which saving more patients at early stage who would otherwise have died is saving LESS total lives due to more people dying at 5 or 10 or 15 years out because they did chemotherapy? The same is true for radiation.

suzieq60

kayb's experience is one to take notice of, even though she was not triple neg.

Racy

Eleni, what was your previous bc experience? - type of bc and type of chemo?

Jennt28

Please note that emmalee's posts in other threads have been deleted as SPAM. The statistics quoted by this person are total baloney and the alternative therapy being pushed is also a bunch of baloney.



Triple negative BC is now considered the most aggressive and hardest to treat. Chemo is really the only option since hormone drugs won't work... Having said that, the decision would always be yours and only you know what risks you are prepared to face to get benefit.



Good luck. BC sucks!



Jenn

wrsmith2x

I am Triple Negative and refused chemo the second time.  I have read that chemo a second time does not dramatically change the stats for persons with local recurrences.  I refused because I took chemo the first time and it didn't do its job.  Why should I expect that it would work the second time?  Even if it comes back I will never know the answer to that for sure.

I wish you luck with your decision.  Namaste'.

Eleni

Thank you once again for your replies. I've been asking this question on different forums and no one has something to say.

Four years ago I was dx with again TNBC, 1.7cm, 2 nodes affected. I had lumpectomy, rad and chemo (3xFEC, 3xTax).

I thought bc was left behind me when I was dx again. It's in the other breast, TN, 1.9cm, no nodes involved. It's supposed to be a new tumour.

I hate how chemo ruins all of your cells. I've sleepless nights and feel a little betrayed from the chemo since I got a new tumor. Yes, I know that chemo helps only against recurrence. All of my friends tell me to do it and I feel that if I choose to do it, it'd be for them and not for me.

Racy

Eleni, definitely post in the TN forum on this site.



How old are you? Do you have kids? Do you have people to support you if you do chemo?

wrsmith2x

Eleni, 

I totally understand where you are coming from.  You feel betrayed by your body, the chemo, the surgery, the radiation.....one of those things should have saved you, right?  I know where you are.  Don't do anything for anyone else.  You have to be comfortable with your decision.  It is your life and your body.  And we are all different.  What works, or doesn't, for one person may not do the same for another.

I pray you have peace.

Anonymous

Triple Negative Breast Cancer Foundation is an excellent resource about 3N bc

http://www.tnbcfoundation.org/

NattyOnFrostyLake

Eleni, my neighbor got a recurrence while she was taking chemo.

If you're looking for other triple negs who have refused chemo there are other websites which don't have people pushing chemo. Remember this is the ALTERNATIVE forum but many people posting don't respect the guidelines set out by the moderators.

Eleni

How scary, about your neighbour, Natty. I hope she's coping.

Do you have a link to share? I understand that people are rather cautious when it comes to alternatives. But this is the only forum I get some answers.

Racy: I'm 43, have two children ages 15 and 13. I've a support group if I do the chemo. It's just that the chemo represents this illness. I can take the operation, the rad was also no problem. But I'm dreading the chemo for a second time.

1Athena1

Eleni - I know what a wrenching decision you face. I am not triple neg but I refused chemo because I do not believe in the science of it for solid tumors. Most of the recurrence statistics for chemo are five and ten years out - not a life time. And there is no data measuring chemo against placebo (for a number of reasons). So you should take the numbers they give you with enormous skepticism.

Question: If you didn't think the chemo would help you the first time around what makes you listen to the stats a second time around? Are they suggesting different drugs?

Since you have a second BC what you are facing is not a recurrence but a second primary. This may be significant. You may want to ask for the oncotype test. Don't take your onc's recommendation at face value, as statistics do not represent your chances as an individual. Strictly speaking, your chances from the outset are always 50-50 -remember that. THEN it is necessary to look at other individual characteristics in you to assess your chances better.

Good luck in whatever you decide to do.

peggy_j

Eleni, I can see why you might feel betrayed by chemo. Obviously, surgery and rads on one breast don't prevent recurrence on the other. But, since you had chemo just a few years ago, it's possible that a tiny version of this new tumor may have existed then, but did not respond to the chemo. (I could be wrong; I'm not sure how fast your tumor is growing). Has your MO discussed this?

One option: some patients with larger tumors have chemo prior to surgery. One goal is to shrink the tumor so the surgery is less invasive. Another benefit: you have proof that the chemo is working for your exact tumor.  I know one person (friend of a friend) who tried this, and the tumor did not respond, so they switched chemo regimens. It may be harder to track the shrinkage of a tumor that's as small as yours, but maybe it's worth discussing with your MO?

Mahmoud

One of the most common problems in cancer patients who choose to undergo 
conventional cancer therapy is recurrence. They might think they have beaten their 
cancer with chemotherapy, radiation, and surgery, only to find a few years 
later that tumors have spread into other tissues -- usually the lungs, brain, or 
even the reproductive organs. Conventional medicine has not yet caught on to 
what's happening here, but the reason why this phenomenon occurs is quite 
simple: Conventional cancer treatments only treat the symptoms of cancer (tumors 
or growths) and do not actually do anything to help the patient regain a level 
of health necessary to keep cancer in check.

LRM216

Mahmoud:

Do you intend to share your magical "cure" with us, or do you just choose to put down conventional therapy as a whole?

Luah

Elenia, sorry you are dealing with a recurrence. 

The choice is always yours of course, and while your doc may not have told you what to do, most docs would indeed recommend chemo for TN with a 1.9 cm tumour. It is our only systemic weapon, and no one dies of cancer in the breast, they die of cancer that has spread to other parts of their body. TN has been shown to have higher rates of distant recurrence (mets) than hormone positive BC. I don't mean to scare you but these are facts you must take into account in your decision. Also, chemo has been shown to be most effective against fast-growing tumours, which TN is. 

The ER+ women here will have different views and experiences; and you will hear some wild statistics from others (emmalee for example) who have their own agendas to push. Please bear this in mind. 

Feel free to join us over on the Calling all TNs thread - there are several women there undergoing chemo right now. 

Racy

Eleni, you would probably get a different chemo the second time. Speak to your onc about which chemo is recommended, the likely side effects and duration.



Wishing you peace with your decision.

MsBliss

Eleni, I made my decision to pass on chemo and rads based on studying the data from my own particular pathology.  I had very bad, aggressive, triple negative pathology but oddly, some favorable features which I used to help with my decision.  But you don't get to do nothing---you have to get informed on life style changes and supplements if you choose to opt out.  I don't like that you have a new primary again, however.  I would suspect that intrinsically, your body likes to produce these cells, and that worries me.  Get educated.  Get your vitamin D levels checked, and read and question about your choices.

Eleni

After a lot of sleepless nights and panick attacks, I decided to do the chemo. Yesterday I got a port-a-cath (I think it's called pricc, in English) and I start on Monday the first FEC. I know from myself that I'd never be able to follow a herbs and alternative medicine regimen. After I made the decision, I felt a relief and could finally sleep at night.

Thank you for your comments. They were helpful.

MsBliss

Eleni,

I think your body is telling you that you made the right choice just based on your feelings of relief.  Alternative options are not only complicated, they can be hard to follow.  It is hard to know what is working, what is specific to your needs, what is strong enough to do the job. 

Later, evidence based supplements are workable even after chemo is done if you choose to go there. 

All my best,

Bliss