Chemo - since I have a choice, why would I?

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  • Beeb75
    Beeb75 Member Posts: 325
    edited July 2011

    Also, question for PLJ -- when your onc said that the Adjuvant Online stats were inflated, did he mean they are too optimistic? Or too pessimistic?

  • PLJ
    PLJ Member Posts: 373
    edited July 2011

    Everybody's situation is a little bit different. So, yes, we would vary in our choices.

    Chemo is scary. There are risks associated with it, as well as risks associated with hormone therapy. Age, overall health, family history and pathology all play a part in deciding one's course. Liver function is *very* important going in. Cytoxan carries a 1/1000 chance of causing a secondary cancer, as per my onc. I was given different information regarding fatality risk but was told that age and underlying conditions significantly influence potential for fatality.

    Surgery itself carried big risks but I had to do that and am just fine. (Although I was sure something would go wrong and worried that I would be in the minority with the worst outcome.)

  • PLJ
    PLJ Member Posts: 373
    edited July 2011

    Beeb75,

    He meant they were too optimistic. I wouldn't worry about it too much though. Every MO has a different opinion.

    Cheers,

    PLJ

  • Beeb75
    Beeb75 Member Posts: 325
    edited July 2011

    That's interesting. I would think the opposite because Adjuvant doesn't even take into consideration Her2 status and the benefits from Herceptin. 

  • Beeb75
    Beeb75 Member Posts: 325
    edited July 2011

    Actually, I think your onc might have meant the opposite...that Adjuvant Online is too pessimistic. I looked at some of the technical reports from Cancermath. One of them looks at Adjuvant and says "Indeed, we found that Adjuvant!Online tends to over-predict patient risk ."

    Adjuvant's numbers are much more pessimistic than Cancermath, but cancermath seems to have been developed by smart people (Harvard types) so hopefully, they know what they are talking about. 

  • PLJ
    PLJ Member Posts: 373
    edited March 2012
  • Haljen
    Haljen Member Posts: 45
    edited July 2011

    My husband is 36 years old and was diagnosed in february after having symptoms for about a year. He has a full right mastectomy on april 13, it was stage 1, grade 3 with an Oncotype of 12. His onc left it up to him as well! Due to the fact of his age and length of time he had symptoms without being treated he opted FOR the chemo. He is on his 3rd of 4 Taxotere/Cytoxen cocktails. He is going by the mentality of doing everything he possibly can to prevent reoccurrence. He will also be taking tomaxifen for 5 years after chemo. He has not had any neuropathy side effects. These drugs effect everyone differently.

  • Shelly1953
    Shelly1953 Member Posts: 35
    edited July 2011

    I know it's a hard decision, but I must agree that you need to do anything and everything to fight this awful disease.  On that note, I was on Taxotere, Carboplatin and Herceptin (x 6) and fought neuropathy by freezing small plastic bottle (8 oz water) and holding them off and on in my hands and different bottles rolling off and on with my feet.  I started after the 2nd treatment when my hands were tingling.  By using the frozen bottles I didn't and still don't have any problems with feet or hands.  In fact the nurses kept my bottles to help other patients.

    Good Luck with your decision.

  • GiGiL
    GiGiL Member Posts: 928
    edited July 2011

    BobbiMarie, my oncotype dx score came up on the high end of moderate risk.  I found my head spinning with statistics.  I did a ton of research online.  My estrogen and progesterone receptors were high.  I opted out of chemo after much thought and prayer.  The improvement in survival stats didn't seem worth the risks of chemo.  My MO told me that there were no wrong decisions in my case, and she would support me in whatever I decided to do.  I decided to go with radiation and hormone blocking therapy.  If my decision turns out to be in error in the future, I will not blame myself or anyone else.  I did my best to make the decision that was right for me.  Most physicians are worried about not doing the most they could do to prevent further problems.  Many cancer patients also want to err on the side of being too cautious.  Each person must make the decision that feels right to her.  if I remember correctly, your stats showed Progesterone negative receptors.  I would research that, and the effectiveness of drugs like Tamoxifen in that case.  That might help you decide which way to go.  Good luck.  It is not easy.  One would think there would be more firm answers, but alas until the TAILORx results come out, it is a bit of a crapshoot.

  • DebRox
    DebRox Member Posts: 437
    edited July 2011

    This decision is very difficult for women in the gray area and we are looking for our doctors to help make a decision. I fell in the low/intermediate range of 21, was stage 1 until final path and tumor just over 2 cm bumped me to stage 2.



    No Onc would tell me what to do, but all 3 I consulted with offered chemo.  My absolute benefit was 3-5% with chemo and that did not seem great to me either, but I would hate to be that 3-5/100 that would have benefited and found out too late.



    One Onc stated that I am young, have an agressive cancer - grade 3 and premeno.  She stated that due to my age, I would be able to tolerate chemo very well.  She said that she did not care what the Oncotype Dx stated (we didnt have it available when I consulted with her) based on those factors she would recommend chemo, but she would support my decision either way. 



    I wish to live with no regrets.  I could not imagine how I would feel or how my husband or kids would feel if the cancer returned and I did not throw everything at it while I was young and healthy.



    With that said, there are no guarantees either.  I now know my body as the ability to develop cancerous tumors which scares me.  I chose the conservative approach and went with chemo. But I do feel that chemo is giving me a clean slate or fresh start.  If cells did somehow manage to get out of my breast and are lurking in my body, chemo will eradicate them and I start all over. 



    As for neuropathy, I have now finished 3 cycles of TC and have not experienced any at all. I did follow advise of many women here, take l glutamine and b6 to help prevent and in addition I ice my fingers and toes during taxotere infusion. I also walk daily and keep active during treatment. For that matter, most of my SEs have been minimal.



    Wishing you the best with your decision. 

  • judyfams
    judyfams Member Posts: 148
    edited July 2011

    I too had an onco score of 20 and did 6 rounds of chemo. Cytoxan/Taxotere every 3 weeks.  I decided to do chemo because I know I would never forgive myself if I didn't and the cancer metastasized.  Also I knew that if bc metastasizes it does so in the bones, brain, liver and lungs.  That decided it for me - I didn't want to chance that.

    I know you are worried about neuropathy, but I read somewhere that if you wrap your hands and feet with ice packs that cuts down on the neuropathy since the chemo does not penetrate cells that are cold.  That is the theory behind the cold caps women wear to avoid hair loss. See if you can arrange to have your feet and hands wrapped in ice packs, or if there is a freezer in the chemo area, maybe you can freeze a few pair of gloves and socks and bring them with you and change them as each one thaws out.

    Judy

  • GiGiL
    GiGiL Member Posts: 928
    edited July 2011

    Premenopausal with young children would be a big factor in deciding to do the chemo.  That would have made me lean toward it too.

  • GiGiL
    GiGiL Member Posts: 928
    edited July 2011

    There are no statistics that I know of that also factor in diet and lifestyle changes and how much that improves one's odds in regard to developing a new tumor at some point.  Anyone know of a resource that would factor in diet, weight loss and improved exercise, as well as stress reduction?

  • DebRox
    DebRox Member Posts: 437
    edited July 2011

    GiGil: I don't know of any studies per se, but a great book to read is Anti-Cancer, A New Way of Life, written by a Dr. David Shervan schreiber, who went through cancer and a relapse. inspirational read and many tips on making changes for the mind, body and spirit.

  • lago
    lago Member Posts: 17,186
    edited July 2011

    Just a comment on neuropathy. I had 6 rounds of taxotere/carboplatin every three weeks. I did get some neuropathy in my left foot. After my 2nd round I though I also had some pins & needles in my fingers. My onc said if it got worse she would reduce my does. I started taking *Acetyl-L-Carnitine after that. (Check with your onc before taking this). Never got it in my  fingers again. My heel seemed to resolved after each treatment too until I got to the 5th round then it stayed. I'm 6 months past chemo and my heel still is a little numb especially on humid days. It really doesn't  bother me. I was told in time it will resolve. To be honest if I only did 4 treatments chemo would have been much much easier.

    *Check out the 3rd to last paragraph: linky  

    BTW I thought cancer math was pretty close to the numbers my onc gave me although cancer math claims their stats are not reliable for tumors above 5cm or more than 10 positive nodes.

  • coraleliz
    coraleliz Member Posts: 1,523
    edited July 2011

    GiGil, I would also like to see the studies. My guess is if there is, it maybe quite small . So, if I got BC despite a good diet, never been overweight & have exercised regularly(always).  Should I even believe it pertains to me? That is if any strong studies exist. I did have my 1st child over 30, that increased my risk of getting BC by 0.1%. No family history......... Still exercising, eating right, etc....

    Sometimes it's hard to believe it's anything I can do anything about. The "crapshoot" I see mentioned from time to time.

  • GiGiL
    GiGiL Member Posts: 928
    edited July 2011

    I will definitely look for that book.  Thanks.  Since my diagnosis, I have done a ton of research and reading. I haven't found the book by Dr. Shervan, however.  

  • PLJ
    PLJ Member Posts: 373
    edited July 2011

    GigiL,

    The Anti-Cancer book helped me to be able to sleep at night after my dx. It contains numerous references and I also bought Dr. Beliveau's books on foods that fight cancer.

    As for stats on diet, exercise, lifestyle to reduce recurrence, someone told me their MO said to reduce whatever recurrence % you have left after all treatments by about 40%. That seems high to me but who knows? My MO told me that exercising 45 min./day, 5-6 days/week will also reduce chance for recurrence but didn't give a %. I have tweaked my diet, exercise religiously and also have a Naturopathic Onc. who is going to work with the MO for an integrative approach.

    HTH,

    PLJ

  • kira1234
    kira1234 Member Posts: 3,091
    edited July 2011

    PLJ I seem to recall diet and exercise brings about a 20% decrease. There is an excellent thread called natural girls that talks about nutrition. I've found these ladies very helpfull to me.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2011

    BobbiMarie, u mentioned TAC in one of your posts. IMO, that would be killing a fly with a baseball bat in your case. I was administered TAC, it is a brutal protocol, and I feel i was overtreated. Good luck to you, it can,t be an easy decision to make when sitting on the fence.

  • Suze35
    Suze35 Member Posts: 1,045
    edited July 2011

    There has been one (maybe two) studies done on diet and exercise - here is a link to a summary of the WINS study:

    http://www.cancer.gov/newscenter/pressreleases/2006/winsbreaststudy

    ER/PR+ women showed a 20% overall reduction in recurrence when they lowered their fat intake and upped exercise.  So if you have let's say a 20% chance of recurrence, diet and exercise can theoretically lower that to 16%.  The benefit is more obvious for triple negative breast cancers, with recurrence rates dropping by as much as 40+%.  More studies need to be done obviously.

    For the OP - do you have any other information about your cancer?  What is the proliferation rate (Ki-67)?  How big is the tumor actually?  I know it says 1cm in your stats, but is it closer to 2 cm?  Size also plays a role in possible recurrence.  How much of it was DCIS?  Did they identify lymphovascular invasion (different from positive lymph nodes).  It is Grade 3, and those cancers are at greater risk for metastisizing.  They also tend to respond better to chemo.  A bit of a quandry.  I would agree that age and overall health should also be taken into consideration.

    Would your doctors be willing to offer Taxol rather than Taxotere? It has a decreased incidence of neuropathy, although the chance is still there.  Taxol can be given weekly as well to deal with this.

    In the end, this is a decision you have to be comfortable with, as well as your family.  Do they have any opinions?  I hate it when doctors don't give you their clear opinions, it is frustrating.

    Good luck with your decision!

  • lago
    lago Member Posts: 17,186
    edited July 2011

    Chicago Magazine "Breakthroughs in Women's Health" January 2011 issue

    Short of resorting to such drastic measures, all women can reduce the risk of getting breast cancer by drinking less alcohol and losing weight. "Patients want to know what they can do," says Cobleigh. "It used to be you could say, ‘There really isn't anything.' Now you can say, ‘If you control your weight after a diagnosis of breast cancer, you'll be less likely to die.'"

    Source link
    _____________________________________________

    Barbe I totally get what you are saying. I sometimes wonder what would have happened if they found my tumor 4 years ago (1 year after I had that suspicious Mammo followed by an US that everyone said was nothing). I might not have been treated as aggressively. Not sure if Herceptin was standard for stage I back then.I might  actually have a better shot at NED/cure being more advanced.

  • BobbiMarie
    BobbiMarie Member Posts: 60
    edited July 2011

    PLJ - where did you come out on your OncoType?

  • BobbiMarie
    BobbiMarie Member Posts: 60
    edited July 2011

    Is the icing standard protocol or is this something I'll need to tell them about?

  • kira1234
    kira1234 Member Posts: 3,091
    edited July 2011

    BobbiMarie, The icing is something you need to tell them about. Some places know about it others don't.

  • BobbiMarie
    BobbiMarie Member Posts: 60
    edited July 2011

    Re the discussion on diet, the Onc did tell me that estrogen is generated by body fat as well as the adrenal gland.  Even though I had a total hysterectomy in 2002, my body is still generating estrogen and my cancer is fed by estrogen.  However, since the progesteron was negative, the drugs like Tamoxefen won't be as effective.  I will still be doing them for the ER+.  That said, they gave me a book as part of their service.  In it they list a High Fat diet as not increasing risk but conributes to obesity which is associated with increased risk.  Olive Oil may have protective effects but further research is needed.  Fruits and vegetables have a limited effect on breast cancer.  VItamin A reduces risk modestly.  Soy products are unknown as studies show contradictory results.  Folate or folic acid decreases risk, especially in women who drink alcohol.  Fish and fish oils reduce breast cancer development in animals but no strong effect has been shown in humans.  Flaxseed is unknown as to its effects on breast cancer and alcohol increases risk.  The book is "Mayo Clinic - Guide to Women's Cancers". 

    The two women in my family that don't drink have breast cancer, the one that drinks like a fish and smokes does not. I am guessing her body is fighting all of these other things and hasn't given any energy to any cancer cells.  I was on HRT - my other sister with breast cancer was not but she never had children and I did.  My 'drinks like a fish sister' without breast cancer has been on HRT for 20+ years.  I was only on it for 9.  As has been stated in many of these, it is a crapshoot.  I gave up figuring out why I got it - I'll blame it on the HRTs can easily let that go.  But even though the info above doesn't tell me that diet and exercise is going to do anything for me, it can't hurt to improve my eating habits and reduce stress and the chemicals that I may ingest.  I already eat a low fat diet (heart disease runs rampant in my family) and exercise 1 hour a day during the week and 1-2 hours each weekend day....I got a dog a year ago and she lives for our long walks. 

  • BobbiMarie
    BobbiMarie Member Posts: 60
    edited July 2011

    Suze35 - the tumor was 1.1 cm so just over the 'limit' and then the OncoType is in the middle and then I'm PR- (even though ER+) with a Grade 3.  All of those make Chemo a suggestion. 

     I don't think I know the proliferation rate.  There was not any angiolymphatic space invasion identified.  Associated DCIS is present, cribriform and solid patterns, intermediate grade with focal comedonecrosis, non-extensive.  The original diagnostic biopsy did not have any DCIS so assume that means that the majority of the tumor was IDC.  The 1.1 cm is at its longest point.  When they did the biopsy I had the US tech and the Mammo tech each tell me the measurements.  One said 12 mm, one said 1 cm but each told me that it was not 'round' and was slightly longer at one point.  I was able to see the images for both as they were doing them - not that that did me any good other than give me something to stare at.

  • BobbiMarie
    BobbiMarie Member Posts: 60
    edited July 2011

    I think my family thinks I am making a big deal about nothing since my brother-in-law and my niece have both been through chemo in the last 2 years.  My niece is on major pain meds due to neuropathy and my brother-in-law had developed lymphadenitis and was quite ill.  My son wants me to do whatever I need to to be well.  I'm single, live in my own house and can't find the energy to keep it up these days.  I have a foster pup for a dog rescue group right now, have a dog that I adopted that was sick and is now showing signs of neurological issues that she needs to see a specialist for, I live 44 miles from work so medication that has any sedative type effects is out of the question as I have to be able to drive (I can't even take cold tablets as I am out for 24 hours), I am hypersensitive to most medication and have to take children's dosages and for the last 7 years have been getting tested for auto-immune disorders such as Lupus due to obscure swelling, skin flushing, etc.  My bloodwork is perfect - maybe it was the cancer all along.  However, since I don't know that, I'm scared to death of what chemo will do to me.

  • BobbiMarie
    BobbiMarie Member Posts: 60
    edited July 2011

    Luan, both Onc's that I saw suggested TC - Taxotere/Cytoxan.  One said 4 treatments and the nurse practioner at the 2nd one also said 4 treatments (3 weeks apart) but when the Onc came in, he said he would recommend 6 ....the Grade 3 is why. 

  • kira1234
    kira1234 Member Posts: 3,091
    edited July 2011

    BobbieMarie, Knowing more now I would agree with the Dr's on chemo. I do have a question are the 6 treatments weekly?

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