Please help me decide on treatment for early stage bc!

mdavisz · New User Joined: 30 Jul 2005 Posts: 2

I am a 60 year old post menopausal woman in otherwise good health that was diagnosed in late April 05 with invasive infiltrating duct-cell carcinoma of the right breast who has been given confusing and contradictory advice by several oncologists.

I had a lumpectomy and sentinel-node surgery on June 22 '05 with three nodes removed for biopsy. My cancer was measured at 1.6 centimeters and the margins were clear. I am her2neu negative, estrogen-receptor very positive and progesterone-receptor very positive.

At first, I was told that I was totally node negative; but later the final report showed that new techniques had found 10 cancer cells in my first sentinel node. None in the other two nodes were found. The Doctors told me that my condition is considered node negative. However, since the ability to find such minute amounts of cancer is new and has no statistical history yet, they do not know what relevance 10 cells will have on my prognosis.

I was told that a second surgery was not advised to remove all the nodes based on a 2% chance of developing lymphodema and based on the results of the normagram. The normagram showed a 4% chance of my having cancer in any of the other nodes.

I have met with four oncologists and found that I fit into a grey area in which most advise CMF, hormone-receptor therapy and radiation. But I am also finding out that they are making this treatment plan based on the Adjuvant on Line program, which states that chemo may provide only 0.4 to 0.6% increase in my life expectancy, depending on what model they choose. Some input the node negative into the program while others use node positive that yields a much more pessimistic mortality prognosis.

1. The anti-estrogen therapy is much more effective and obviously pays to do as does radiation. But I do not know whether I should do the Chemo based on the low numbers. How do I decide?

2. Also generation 3 medications provide 35% more effectiveness than CMF for node positive patients. It is believed that it would also be as effective in node-negative patents although no studies have been performed on node negative people. Would G3 drugs be an appropriate option for me?

3. What are the side effects of generation 3 Vs CMF (generation 1?)

4. Are there any reasons for not taking the G3 Vs the G1?

5. Does CMF have any advantages?

6. Would most insurance companies cover G3 medications?

7. Is there any other medication I should consider rather than CMF?

8. Why?

Thank you Smile

tiadesai · New User Joined: 28 Jun 2005 Posts: 9

well
my aunt used to suffer from breast cancer and the doctor had recommended [url=http://www.drugdelivery.ca/s359-s-ARIMIDEX.aspx/]Arimidex[/url] for her.
It worked well for her.
Have a talk with your physician prior to deciding to use Arimidex. If you are suffering from any medical ailment or are taking other medications, you may be specially monitored during the treatment process or have dosage adjustments.

francis · Regular Joined: 12 Jun 2005 Posts: 35

You have asked great questions. You are grappling with what my wife has been trying to decide over the past few months (chemo or no chemo; which type of chemo). My wife's onco has suggested CMF for my wife, and we have agreed to go that route, primarily because my wife has few high risk factors and CMF is better tolerated than AC+T(3rd Gen). Being ER/PR positive and HER2 negative, with little or no node involvement, argues in favor of CMF as an option. I would suggest that you work with an onco who will really focus on YOUR cancer, and decide what is best for you.

francis · Regular Joined: 12 Jun 2005 Posts: 35

Two more thoughts:

It looks like by far the most benefit you would get is from the hormone treatment. I can see why you are undecided about chemo. Very difficult decision. Given no clear for AC+T or even a clear need for any chemo at all, I would opt for CMF.

The 35% better result from 3rd Gen is the relative benefit. The absolute improvement seems to be in the 5-7% range. Is that degree of hypothetical improvement worth the side effects?

I am only a husband who has been doing very basic research on this subject for a few months, so take anything I say with a big grain of salt.

I hope this helps.

RachelEsther

Hey there!

I do not envy you having a choice in all this - what a difficult decision!

But I do URGE you to make you decision AS IF chemo had no side effects, or only minimal ones. Chemo is temporary. Chemo will be over. Your hair, if you lose it, will grow back. You will lose your "normal" life to some extent for a while. But it WILL be over. I did really great on chemo (4AC+4Taxol, every 2 weeks), never any nausea, and few other side effects besides fatigue, although some women have a very tough time of it. But it is OVER at some point. You can search this board for more info, or go to my site (www.xanga.com/bcsurvivor) for my info on how chemo was.

So you really need to decide if chemo would help you and if you want that extra measure of insurance. You will live through the chemo. Honest. It's an investment in your future.

You say that the chemo only gives you 4-6% better survival, but you didn't say what your survival rate would be otherwise - each little percentage on another could add up. OH, WHAT AM I SAYING? I hate those survival rate things - they are inaccurate, and lump everyone in a stage together, without reference to age, hormone receptor status, general health, etc, and the statistics are old anyway (how can they get 5/10 year stats except with women who are 5/10 years out, older protocols, etc). So I hate percentages. Won't look at mine.

However, that being said, although maybe the huge percentage of women in your position who choose not to have chemo never have a recurrence, I am sorry to say that whenever I hear of someone who has a recurrence, it is frequently accompanied by, "They said it made little difference, they left it up to me, and now it has come back." And frankly, it usually seems to come back as mets to other parts of the body. I am sorry to frighten you, perhaps it is a rare occurrence that I just hear about alot. I don't know how to think about that, I just offer it up as a pessimistic viewpoint.

For me, having gone through a tough chemo, I would do it again in a minute if it would help me. It wasn't that bad. So please, don't let the fear of chemo influence your decision.

Rachel
_________________
Rachel
Age 50 at diagnosis, Stage IIIA
IDC grade 1, DCIS grade 2
LB Mastectomy, Expander Recon 3/3/2004
Dose Dense Chemo completed 07/01/04
Radiation completed 09/02/04
Silicone Implant 11/22/04, removed 7/05 due to infection (dental cleaning), replaced 12/05. Reduction RB for symmetry 04/06
Tamoxifen 10/04-10/06, Arimidex 10/06 on

Muttsmom

Hi,
Just my personal opinion based on what I know and what I've seen since being dx 3 1/2 years ago is hit the cancer with everything you've got and pray it never comes back. CMF is a safer chemo combo on the heart and normally your hair will thin, you won't lose it all (which shouldn't be a factor because it's your life, but that is a + for that type of chemo). I've seen Stage I ladies with 1cm tumors and 0+ nodes have reoccurences. I know that is not the norm, but it does happen. Unless CMF has changed, it's once every 3 weeks for 6 treatments. I was Stage III so there was no doubt what I needed to do and that was get treated real aggressively and pray it got every cancer cell that was floating around. I opted for a simple mastectomy on the other side to increase my odds a little more of it not coming back.
It's a very personal decision that only you can make and I'm real disappointed how much I'm hearing lately that oncos are telling the patients to make the choice. They should know what the best course of treatment is for you. You can always get a 2nd opinion.
Best wishes and if I can help, feel free to send me a personal message. My e-mail address has changed and for safety reasons (long story that has to do with abusive ticked off ex) I'm not going to put the new one anywhere.
Take care and you'll make the right decision. You'll know.
_________________
Nancy
2/14/02 ILC 43 - 5.5 cm 9+/16 nodes
Stage IIIA er/pr+ Her2-
2/02 MRM
FECx6 radsx33
Tamoxifen - Arimidex (chemo induced menopause)
4/03 SM w/bilat. recon.
9/03 expanders removed
5/04 repair reconst. disaster
10/04 Actonel for bone/joint pain from Arimidex
NED - 5 years
3/07 Diabetes
In memory of Kim 12/1/04

ohMary

I just want to be the devil's advocate here, and say that chemo is not harmless. It's not just your hair (which, yes, grows back) but your whole body that is effected. I am not at all clear that the symptoms I have will ever go away (nausea, weakness, bone and joint pain, backache, hot flashes, dry skin, insomnia etc etc), and if I had the choice again, I would not do chemo. The price is too high. I would rather be in my forties and feeling good for one year than live twenty years feeling like an creeky old granny who complains that everything hurts all the time!

Important distinction: I did AC + Taxol not CMF which I understand is easier.
_________________
Mary, age 43 at diagnosis - Jan 05
Invasive ductal carcinoma Stage II
1.3cm tumor; lumpectomy Feb 05
pos nodes (2 of 13) er+ pr+ Her2-
AC + Taxol (completed June 05)
33 Rads (completed Sept 05)
No hormonal therapy (ever)

Kristen · Experienced user Joined: 01 Nov 2004 Posts: 60

Hi,
I have not posted in a while due to not having much time lately. However, I can't help but respond here because I two was first told that I had negative nodes, 1.6 cm invasive duc.
Later the final pathology found that one of the three nodes were indeed postive for cells (not much but still present). Which I went back in and had 13 more taken just to be sure that none had cancer.
Here is the thing...because of they way they do it now my doctor told me that lots of women in the past may have been told they had negative nodes because of they way they sliced them. However now, they do it differently into much smaller slices. (does this make sense...I am going by what I remember)...
So, my personal oppinion here is to take all the treatment they offer..and that includes chemo because even though not many cells were present in one node, the fact remains that there was one present and therefore the cancer was able to get that far.
I hope this helps some, I don't mean to scare you but chemo is designed to go after any cells that may have escaped, I personally would chose to take the chemo, if nothing else just for any extra sercurity.
Kristen
_________________
Dx 3/03
43 yrs old
Invasive Ductal
1/14 + nodes
lumpectomy 1.6 cm
3 sugeries for clean margin & nodes
A/C & Taxol Dose Dense with daily Nuprogen
38 Rads
ER+/PR+
Her-2/neu +++
Stage 2
Tamoxifen 19 months
Treatment Finished 12/30/03

LindaTN · Regular Joined: 23 Apr 2005 Posts: 42

Never let anyone tell you chemo is harmless and everything will be back to normal for most of us that is not true. Aches and pains, chemo brain, heart damage. That said chemo also may save some lives, remember only 14 per cent of the onco when given a poll said they would take chemo or give it to one of their family. It also rasies heck with your immune system. I did A/C in 2002 had two postive nodes. I am 61 at present and considering our age sometimes we are treated a bit different. Sounds like Tamoxifen or one of it cousins will be necessary for you. Side effects there also which no one wants to talk about but often might be the most benefit for a lot of us. I stop taking it off and on for a few weeks and always feel better but go back on it with The What If it comes back! After five years they want to put me on another of their little pills but not sure I will go that route. It is a hard decision you have to make but yes Drs should let us decide after giving us the facts and figures. Good luck and ask the powers above for some answers. Linda

Muttsmom

I feel like I have to jump in here. No one said that chemo MIGHT cause problems. I have a very aggressive chemo combo, FEC. I was told that one of the chemos gave me a 3% chance of leukemia. When you look at 3% chance of leukemia and virtually 100% chance that the cancer will come back, that's a no brainer. No all chemo causes heart problem. Yes, I have chemo brain, so what, I forget things and then remember them later on. I had no pain with chemo. Some oncos give neulasta shots routinely. I never got any because my white counts bottomed up, but came back up on their own. I was 43 when dx and it's 3 1/2 years later and yes, the Arimidex can cause joint and bone pain..............take Actonel or Fosamax, it completely elimated the joint pain. I'll deal with a little discomfort if it saves me life until something better comes around.
Yes, chemo is poison, but for the people like Suzanne Somers who are anti chemo because it's poison, what does she do, inject mistletoe extract into her stomach..........what's mistletoe? POISON.
Anyone thinking about going the " natural" route, would probably get more info on a board that deals with nothing but natural treatment. I've known 3 indirectly that went that went that route and all 3 have tied. A combo of traditional treatment that is proven to work, along with herbs and all that are fine as long as you TALK TO YOUR ONCO 1st. Some of this "natural" stuff will cause you more harm then good.

Where did you find that surgery that said most oncos wouldn't take chemo? What are they doing, just waiting to die?
_________________
Nancy
2/14/02 ILC 43 - 5.5 cm 9+/16 nodes
Stage IIIA er/pr+ Her2-
2/02 MRM
FECx6 radsx33
Tamoxifen - Arimidex (chemo induced menopause)
4/03 SM w/bilat. recon.
9/03 expanders removed
5/04 repair reconst. disaster
10/04 Actonel for bone/joint pain from Arimidex
NED - 5 years
3/07 Diabetes
In memory of Kim 12/1/04

LindaTN · Regular Joined: 23 Apr 2005 Posts: 42

Thanks Mikes there is another survey out there with the 14 percent figure. If I ever get through the chemo brain[which no one told me about at all] I will find the post. I'm sure not saying don't take chemo but don't go into anything without knowing how much good it will do you over the harm it will do. I think the tamoxifen drugs may have done more for the increase in time before cancer returns then anything else, don't forget the radiation Drs they will all tell you it is due to the use of radiation that we are living longer. No one told me I might have fluid in my breast for the rest of my life either after the lumpectomy and radiation, might of gone with a mastectomy and nothing else. Just eating herbs won't do it likely but who knows, taxol is nothing but part of the yew tree! Linda

Muttsmom

I hope you know that you are probably scaring the hell out of the newbies and will probably scare them in to NOT taking treatment.

I also disagree with what you're saying about women with advanced breast cancer. It use to be if someone had IBC, they only had a 10% change of 5 year survival (according to the ACS, the 5 year survival actually means 5 years survival WITHOUT a reoccurence, not that you'll be dead in 5 years). The majority of the women I've met that were dx with IBC are doing great after 5, 6 and up.

I also was dx with advanced BC, Stage III. With it being in 9 of my lymph nodes, no doubt it was in my blood stream. What you're telling me, besides chemo will probably shorten my life, that I would do betting with cancer cells floating through my body just looking for a place to mutate and become another tumor?

Pancreatic cancer has never had a good prognosis because it's not caught early due to lack of symptoms. Most will die within a year. Yes, chemo is given to slow the growth of the tumor for comfort reasons, not to cure. AND, there is NO cure for BC and most other cancers.

Everyone is entiled to their own opinion and take whatever treatments they choose to or choose not to and discussions about different things are always educational, but anyone can write a book, have a web page etc. but it doesn't mean they are based on facts. I'm sure many are bitter losing a loved one to cancer, but some have much more aggressive cancer then others. This board is about BC so I doubt many of us know alot about all the other kinds of cancer you are talking about and just adds confusion to newbies who are already scared beyond words.

I have no regrets about taking chemo and radiation because I chose to live. I personally take articles written by people who don't have the creditentials to be writing the info they are writing. You can find anything bad about any topic if you look long and hard enough. Everyone responds different to treatment and there are good and bad doctors, like everything else.

Just my 2 cents. I won't read anymore that is posted under this heading. When legit. people write articles, I'll read them. I think CURE magazine is a good one. It's written by professionals and talks about the progress being made in the treatment of all kinds of cancer. I'm not sure why you want to put fear in these ladies that are just starting on their journey when you have no idea what they are going through. Most here have been dx with BC and are dealing with it or have completed treatment. There's not been one person I know that went the " natural" route that is still alive. I know one lady that refused all treatment at Stage II, she died less then a year later. I really wish you'd do more research and find both sides of opinions and again, not just search for anything neg. you can find.

I'm leary to tell any newbies I meet from other boards to come here. They are scared enough without ready a long post on nothing but cancer and dying from it. There are SURVIVORS and some for 30+ years and die of something completely different. Me personally, if something will give me a 5% better chance of beating this beast, I'll take it. I went after it with all the big guns, giving myself the best chance possible for it to not come back. Will I live to be 80, no one knows, no one except God.
_________________
Nancy
2/14/02 ILC 43 - 5.5 cm 9+/16 nodes
Stage IIIA er/pr+ Her2-
2/02 MRM
FECx6 radsx33
Tamoxifen - Arimidex (chemo induced menopause)
4/03 SM w/bilat. recon.
9/03 expanders removed
5/04 repair reconst. disaster
10/04 Actonel for bone/joint pain from Arimidex
NED - 5 years
3/07 Diabetes
In memory of Kim 12/1/04

mikes · Senior User Joined: 25 Jul 2005 Posts: 143

"I hope you know that you are probably scaring the hell out of the newbies and will probably scare them in to NOT taking treatment. "

I am not trying to scare anyone. Cancer is serious business. Putting one's head in the sand is never helpful. Knowing the truth allows rational decisions to be made. The informed consent laws in this country require that your oncologist tell you the truth about the benefits and risks of your treatment so that you can decide for yourself. Unfortionately (and in my Wife's) case, this not always done. How can you make an informed decision if you don't know the truth?

"Everyone is entiled to their own opinion and take whatever treatments they choose to or choose not to and discussions about different things are always educational, but anyone can write a book, have a web page etc. but it doesn't mean they are based on facts."

Most of my posts quote US Govenment agengies charged with administration of our country's medical system. In the last post, which is an exception as I pointed out, prestiguous members of the cancer community and Canada's most prestigous cancer center were quoted.

"I really wish you'd do more research and find both sides of opinions and again, not just search for anything neg. you can find. "

I've been doing nothing but research. Not just any research, but research of the authorative sources used by doctors and members of the medical profession. Having reviewed your posts, it appears that you have done no research, quoting nothing of authority, but rather just giving unfounded opinions. This is your priviledge, but don't critisize those who always give their research sources with links for others to check out. Nothing you have said can be checked out.

Im sorry that you are upset. I come here to share what I haved learned to try and help people the best that I can.

Do you think that ohMary and LindTN were trying to scare people too?

LindaTN said: "It is a hard decision you have to make but yes Drs should let us decide after giving us the facts and figures." So what is wrong with giving the facts?

ohMary said:" I just want to be the devil's advocate here, and say that chemo is not harmless. It's not just your hair (which, yes, grows back) but your whole body that is effected. I am not at all clear that the symptoms I have will ever go away (nausea, weakness, bone and joint pain, backache, hot flashes, dry skin, insomnia etc etc), and if I had the choice again, I would not do chemo. " I have never said that anyone should or should not take anything but you attack me.

On the positive side:

http://www.breastcancercare.org.uk/News/Breastcancerinthenews/1953

"According to trial results presented at the American Society of Clinical Oncology, a new treatment for breast cancer can reduce mortality rates by more than 30 per cent. This treatment involves using the drug Epirubicin, which binds to the DNA of cancer cells preventing them form dividing and growing.

The National Epirubicin Adjuvant Trial involved administering almost 2000 women in Britain with either four rounds of Epirubicin or six rounds of CMF, followed by four rounds of CMF. The women with the alternate Epirubicin rounds were 31 per cent less likely to relapse or die than those treated only with CMF.

Such a dramatic difference in results when using existing drugs in a different way is rare: more large scale trials are needed but the results appear promising."

mikes · Senior User Joined: 25 Jul 2005 Posts: 143

Cyclophosphamide is one of the components of the CMF and FEC chemotherapy treatments. It is a derivative of mustard gas, which is used in chemical warfare. The OSHA Technical Manual has several things to say about this carcinogen. Notice that it a class I IARC carcinogen. This doesn't seem like a very good qualification for an agent being used to treat cancer.

No wonder those doctors won't recommend it for themselves and their families.

Did your oncologist point these facts from the government out to you before starting your treatment with Cyclophosphamide?

http://www.osha.gov/dts/osta/otm/otm_vi/otm_vi_2.html#3

Osha Technical Manual states:

?A recent study has reported wipe samples of cyclophosphamide, one of the class I IARC carcinogens, on surfaces of work stations in an oncology pharmacy and outpatient treatment areas (sinks and countertops). Concentrations ranged from 0.005 to 0.035 mcg/cm2, documenting opportunity for dermal exposure.?

And

?Urinary Metabolites. Venitt assayed the urine of pharmacy and nursing personnel handling cisplatin and found platinum concentrations at or below the limit of detection for both workers and controls.112 Hirst found cyclophosphamide in the urine of two nurses who handled the drug, documenting worker absorption.35 (Hirst also documented skin absorption in human volunteers by using gas chromatography after topical application of the drug.) Urinary pentamidine recovery has also been reported in exposed health care workers.?

And

?Excreta from patients who have received certain antineoplastic drugs may contain high concentrations of the drug or its hazardous metabolites. For example, patients receiving cyclophosphamide excrete large amounts of the drug and its mutagenic metabolites.46,92 Patients treated with cisplatin have been shown to excrete potentially hazardous amounts of the drug.112 Unprotected handling of urine or urine-soaked sheets by nursing or housekeeping personnel poses a source of exposure. ?

http://www.cancer.gov/cancertopics/pdq/cam/mistletoe/HealthProfessional/page6

(this is the National Cancer Institute a department of NIH)

"Although a number of different mistletoe extracts have been used in human studies, the reported side effects have generally been minimal and non?life-threatening."

I should point out here that I don't necessarily advocate the use of mistletoe because I really don't know much about it, but to equate it as a poison the same as the cyclophosphamide in the CFM chemotherapy seems to be a bit of a stretch.

Muttsmom

I have done alot of research on breast cancer since that is what I'm dealing with. I don't have my head in the sand. My onco gave me a list of all the side effects of every chemo I was given. I was allowed to ask questions and based on what I DID research (I'm not the idiot you think I am), I opted to go for the only proven treatment that works. I don't know what I would have done if I was a Stage I, but I was a Stage III and I wasn't dumb enough to think it would go away on it's own.

No, I don't think the other 2 are scaring newbies. They took conventional treatment along with alternative and they told both sides of the story, not just one. Again, I'm sorry you lost your life, but lung cancer and breast cancer are different. There is a much better survival rate with BC then lung cancer, sadly for you and your wife. I don't think it takes a rocket scientist to know that chemo is poison, but it's not like it hasn't been tested. If you notice, the FDA here is much slower then overseas in permitting any type of medicine, chemo or otherwise to be used.

My best friend died of BC in 12/04 but I don't blame the chemo. Her's was very aggressive and unfortunately, her surgeon didn't believe in mastectomies and wanted to shrink the tumor 1st so he could do a lumpectomy. My dear friend was chemo resistant and the tumor started growing after 3 weeks. THey finally did the mastectomy and ONLY gave her 4 rounds of Taxotere, which is less then they give a stage I lady. It was in her lungs within 6 months and her brain a year later. Do I think she would have lived if she went the " natural route".........not a chance.

You're right, we're all entitled to our own opinions and again, different cancers have different results and use different chemos.

I don't appreciate you telling me that I obviously haven't done any research. I just saw no point in this threat continuing into an argument which you seem to want. I was trying to point out the facts that there was no trials, no one overseeing this natural route and there was no clear evidence that it did any good. There are trials and studies done before a chemo is allowed to be used.

Everyone does what is best for them, but I feel like you are more shoving your beliefs down everyone's throat and only showing the negative side of conventional treatment. I'm on Arimidex. It causes bones to become weaker, so I take Actonel and Vitamin D and calcium to prevent those problems. Am I willing to have bone and joint pain, which is relieved by taking the Actonel, you bet I am. I choose life!!!!!!!!!!!!!!

Why I came back here, I don't have a clue. I guess I was curious to what you'd have to say against my opinion, which I'm entitled to.

PLEASE do NOT base everything on this breast cancer board when it applies to lung cancer. They are 2 different diseases, different prognosis, different treatment etc. Anyone with cancer has enough to worry about, they sure don't need to read something and assume it's about BC since it's a BC board when in reality, it has nothing to do with BC, but lung cancer instead.

Before you tell me I'm ignorant and didn't do research..........yes, I know chemo is poison, but it is controlled as to what goes in, how much etc. so it causes the least amount of problems. Yes, people get chemo brain, that's a known fact and we deal with it. I was told everything upfront and I've learned a whole lot since I was dx. Does everyone respond to it.........NO, but many more do then don't.
_________________
Nancy
2/14/02 ILC 43 - 5.5 cm 9+/16 nodes
Stage IIIA er/pr+ Her2-
2/02 MRM
FECx6 radsx33
Tamoxifen - Arimidex (chemo induced menopause)
4/03 SM w/bilat. recon.
9/03 expanders removed
5/04 repair reconst. disaster
10/04 Actonel for bone/joint pain from Arimidex
NED - 5 years
3/07 Diabetes
In memory of Kim 12/1/04

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