Trouble making a decision

I believe the correct title of this article is "5-fluorouracil can Cause Severe Neural Damage".

First of all, this is only one of a number of chemotherapy drugs.  Then there is a  problem with the statement with the "virtually all chemo patients suffer from some sort of cognitive impairment".

That is different from the 15-20% later quoted in the article.

I had adriamycin and cytoxan.  Then followed by a bark of Pacific yew tree, otherwise known as Taxol.  I was fine throughout.

Most patients have much less chemo than I had.

Please, please stop posting this nonsense.  Do you really wonder why the rest of us get angry!!!!

This is not because we have "been duped by the medical/pharma industry" but because we get angry when berated for taking actions that saved our lives.

There are wonderful people like Britchick out there who do wonderful work everyday saving lives.  I would take her counsel any day over the local health food store owner's.

This truly has been an education.  In ignorace, in a failure of education, in lack of compassion, in total nastiness......and the jaw-dropping nonsense out there on the internet.

Everything in life has the potential for side effects. When benefits out weigh risks....do it, is how I decided.

Lovetorun -IDC, 2 tumors, 1 positive node? I may be wrong, but that sounds awfully like stage 2a or 2b. If so, IMHO, you would be crazy to not have chemo.

Because if you should happen to then go on to stage 4, because you hadn't arrested any invisible metastases that might being doing their mischief unbeknownst to you, well, it was my onc who quietly said, at the end of our first meeting "and of course stage 4 is incurable".
and I heard him loud and clear.

I'm sorry that the onus on you Americans is to shop around and have to make such deeply important decisons. I'm in Canada. My wonderful team presented me with a scenario for treatment, which was to give me everything they had, and it was simply up to me to turn down anything i didn't want to do. I had a 6 INCH tumor - that was 2008 - and I had the works, and hey, (knock on wood) it's 3 years later and here I am!

 Best of luck, sorry you have to be here, be careful with your precious life

Arlene

 

Dexxy: I found Clyn's post confusing also. She is quoting Marybe's previous post in the bolded portion. So she's not saying that she herself is Stage IV.

Britchick: I'm not sure which post you are referring to as a propaganda post about Oncotype. I looked back up this page and the mention of Oncotype was lovetorun who is herself still in the decision stage.

I know it's not relevant to dexxy as she is node-negative, but the Oncotype DX test is also now done on women who have 1-3 positive nodes. I had two positive nodes and had the Oncotype test. Because they've only started testing recently in node-positive cases, the predictive value is less than it is for node-positive tumors. They base their predictions on a study involving a relatively small number of women. The more node-positive women who have the test, the greater the data will be and it will hopefuly become a more accurate predictor.

My Oncotype score of 18 suggested I would have little to no benefit from chemo, but this was based on the small-scale study. I eventually decided to have chemo anyway but did not regret having the Oncotype test as it gave me additional information about my tumor.

Also I wouldn't agree that the statistics are accurate. I think the statistics are a great starting point and the best way of predicting the value of treatment but we need to remember that they are all based on studies which usually take a lot of time so the statistics necessarily lag. This is a good thing as far as we are concerned as treatments have improved so much. 

dexxy,

I've been a lurker here ever since I was diagnosed with IDC 3/22/11.  But today I was inspired to finally write when I read your thread.  My stats are similar though not identical to yours, AND I'm in Foster City!  Had lumpectomy with clean margins 4/15/11, 0.6cm, Stage 2a, Grade 3, 1/2 nodes, ER+/PR+, HER2-.  Oncotype score was 15, so initially I was told chemo had no benefit.  I wrote a celebratory email to all my friends, only to have my MO call the next day and say because of the positive node, she suggested chemo even with a low score.  Started chemo (TCx4) 5/16/11 and this Monday will be round 3.  It's really not nearly as bad as I imagined.  Just queasiness and bone ache from Neupogen for a few days afterward.  I held on to my hair until this week; it's down to about 5%, but I'm sure after my 3rd tx, it'll be gone.  I would love to get together with you since we're neighbors, but I have to figure out how to PM, lol!

ifyoucandream: I think you made a good decision to proceed with the chemo anyway despite the Oncotype score. But I do think it's valuable to have the extra information provided by the Oncotype. Your Oncotype score suggests that you have a much lower risk of recurrence than you would expect if you just looked at the tumor grade.

Ifyoucandream: No, the Oncotype DX test and genetic testing are two different things. Oncotype DX tests a sample of the tumor and is a test that helps predict the chance of distant recurrence. Genetic testing is a blood test that checks for the BRCA1 and BRCA2 mutations. A positive result means that you and your relatives may be at increased risk for breast and other cancers. A negative result does not mean that you do not have a genetic cause for your cancer; it just means that you do not have the BRCA1 or BRCA2 mutation. Other mutations are being identified, but there is no other test available yet. The BRCA genes (BRCA1 and BRCA2) are tumor suppressor genes. Mutations in these genes can be inherited from parents. When they are mutated, they no longer suppress abnormal growth, and cancer is more likely to develop.

Propaganda is a very strong word.

If the truth scares you, maybe you should re-consider your position.  Leukemia is listed as one of the rare potential side effects, occuring in about 1% of patients.  Neuropathy occurs much more frequently, but it too has a devastating effect on quality of life. 

The lifetime risk of being diagnosed with breast cancer is 1 in 8, and heading toward 1 in 7.  The 11% risk is darned close to that to begin with. 

The population that receives the biggest boost in survival rates from chemo are pre-menopausal women, and even then it is only a few percentage points.  In most studies of older women, the differences are not large enough to be statistically significant.  The exact numbers vary from study to study, but this is not some miracle cure.  Many scientists believe that the benefit comes from throwing those women into instant menopause, lowering their hormone levels in the process.  There are far less draconian ways to acheive the same result, but chemo has never been tested against those treatments.

I was talking about the all too frequent scare tactics about leukemia

Since when is alerting someone to a potential danger listed by the manufacturer a "scare tactic"?

I believe for some women, especially those who are stage IV and getting symptom relief as the chemo shrinks their tumor(s), the benefits may outweigh the risks.  For someone who is young, and whose cancer is stage 1, the risks may well outweigh the benefits.  Every woman facing this decision has the right to be fully informed of the risks before she makes her choices, and too frequently, we see women on these boards whose lives are changed forever by side effects they were not warned about.

When I was diagnosed, I did NOT want to do chemo. I took all my information to my GP, who has been a wonderful advocate for me over the years. He looked over all my stats and said, "Ruth, you know you have to do chemo. You have ONE SHOT to beat this thing. If even one cancer cell has escaped and is not killed (by chemo), then it will come back and you will be dead." I had the chemo. And more than four years later; so far, so good. No regrets whatever happens because I gave it everything I could....

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That is the big question, and one which, as of now, has no 'for sure' answers, which is why this is such a difficult decision. I think it's like taking out flood insurance; you hope you never need to use it, but if you live on a flood plain, you better have it.

dexxy: in the end it will be your decision. None of us who did chemo have made the decision lightly. You have to balance the known benefit of reducing your risk of recurrence with the possible risks. In deciding what chemo to give you, the oncologist will take into account your age, general state of health and family history. This will help determine which chemo regimen will be most effective while still being well-tolerated. 

I don't think it's useful for posters to start detailing the SEs or risks of chemo to you. It's the onc's and oncology nurses' job to do that, and they will, should you go that route. 

I really don't know what I would do in your situation. You didn't have any node involvment and your tumor was small. On the other hand there's your age and Oncotype score.