Chemo or No Chemo?

Hope I am not breaching etiquette by posting on this thread

I was stage IIIC at diagnosis. Took all treatments offered. Had 5 years of excellent quality life. Unfortunately I am now stage IV. I have absolutely no regrets about taking chemo. At least I know I did everything I could. Back on treatment, still good quality of life, hopefully for a bunch of years left.

But I was 20 years younger than you at the time, with wee kids at home. So that obviously affects

priorities.



I guess a question to help you may be - whichever choice you make, if you had a recurrence, how would you feel?

If you took chemo, then recurred, would you feel glad you did everything you could, or regret that you had to go thru treatment and still recurred?

And if you didn't take chemo, and recurred - would you feel at peace with your past decisions, or wonder if it could have been prevented?



Hope you find the info you need to make a decision that is true to yourself, and not based on fear.

You could always try chemo, dose dense, that means taxol once a week for 12 weeks . much easier to handle. the A/C is the tough one, but there are only 4 of them...................They will always give you breaks in between if you are  not able to do it.............................praying for you, it's a hard decision................. you know back in the day my husbands grandma had BC she had a radical mast.

no chemo,  or rads back then,  I am not sure about her node situation, this was like 65 years ago. she got BC at 39, and died of old age at 91..............................

Kathy, just last weekend I was on a panel for a women's service club, whose topic was about women's health issues ('women's' cancers in particular).....I thought you might want to hear the take of one of my fellow panelists, who is in treatment with a  IIIA diagnosis. She is throwing everything at the cancer and said, "When people tell me they are so sorry that I have to go through such grueling treatments, I tell them that I am thrilled to have a CHANCE to BEAT this diease". Another perspective to consider.

Kathy, have you thought about what you will do if you don't do chemo?  I have been thinking about this for the past few days.  If you pass on traditional chemo, I would recommend talking to the onc about the following:  Your MX then rads and then adding metformin with your AI.  There is a trial for metformin, but I am not sure you would be eligable without doing chemo first.  Most oncs won't RX it because the data is too preliminary so they say, but from reading the studies myself and peoples responses on here, I think it would be worht seeing if your onc or PCP could put you on it.  It does have some GI side effects from what I heard, but it might be worth trying out. Good luck! 

Again, for me, at 98% ER pos and 8% PR positive, had measurable shrinking of my lymphnodes after 12 weekly taxol.  I did taxol first and now am on FAC.  I always ask for the same Radiologist during my ultrasounds and she was sooo pleased with the results of just the taxol.  I had my primary tumor removed before chemo.  I had residual disease left in lymphnodes that weren't part of the 12 that were removed.  Do you have a reference article for the taxol and ER positive.  T-FAC is the primary chemo for MDAnderson, the number 1 cancer center in the country.  I don't remember Sloan ketterings (#2) but I am pretty sure they use taxanes also.  Good luck at your appts and thanks for keeping us updated.

Kathy you are getting lots of good advice here and I will add my two cents also.  I do understand the fear of chemo and feeling like why would anyone let "poison" into their body.  I believed all the horror stories I had heard and was so fearful right before starting my first chemo in 2000 that I sat in the waiting room in tears.  A patient there who noticed my distress walked over and handed me a beautiful crochet angel.  She told me someone had given it to her at her first chemo and she wanted to pass it on to me.  That wonderful gesture made me think about all the women who had gone on before me who successfully completed treatments and were living a wonderful, full and active life.

I made it through my first chemo which was Adriamycin/Cytoxin (AC) and was amazed that the things I had feared so much, never came true. After 4 rounds of AC and then 4 rounds of Taxol over an 8 month period, I never got nauseated or threw up,  I never ended up in a hospital, I continued to work both at home and for my job.  Yes I lost my hair, and yes there were a few days every cycle where I felt fatigued and "icky".  Somedays I had a sore mouth, some days I had diarrhea, but for every discomfort there was a medication to lessen the symptoms or it resolved on its own.  Right before starting chemo, I thought spending 6-9 months in treatments seemed like an eternity, but those months went so much faster than I would have ever imagined!  Now I realize that the time we spend in treatment is an investment in our future.  6 months, 9 months, a year spent in treatment are well worth the return of many years of a cancer free future.

Strange as it may seem to you now, I say this even though I have had cancer twice.  My first cancer, a Stage II IDC never returned after the AC/Taxol chemo and 7 weeks radiation.  I am a 12 year survivor of that IDC cancer.  I am now a 6.5 year survivor of a Stage IIIC ILC with 23/23 positive nodes.  This was a new primary cancer in the other breast and unrelated to the first diagnosis.  5% of women with breast cancer may have a new primary cancer sometime in their life so I guess I am a member of an exclusive club.

I again had chemo for this second diagnosis, this time Taxotere and Xeloda chemo since you can't do the AC/T twice.  I had 6 rounds of chemo over a 6 month period.  Both my cancers were strongly ER positive 98% and 94%.  The second time around for me was even easier than the first as far as chemo SE's were concerned.  The use of pre-meds, anti-nausea meds as so many others have mentioned truly work wonders at keeping patients functional with very little discomfort during treatment.

Did chemo ruin my immune system?  Well the truth is that chemo does temporarily lower our immune systems ability to protect us from disease.  A patient does need to avoid exposure to illness and be proactive during the treatment period to eat well, sleep well and conserve their energy whenever possible.  But even before I ever had my first cancer I had already had a serious case of mono in 1992, 3 episodes of viral meningitis from 1995 to 1998 and a kidney stone in 1999.  Now after going through 2 separate BC diagnosis and a total of 14 months chemo and ongoing hormonal medications, my body has returned to good health.  I am active, strong, staying busy taking up new hobbies, loving my family and enjoying life in general.  I also have not had a cold, the flu or any illness for over the last 3 years so I guess my immune system has fully recovered!

SO in spite of some of the things you have read elsewhere or been told, I at least am someone who has had their strongly ER positive cancers successfully treated with both the AC and Taxol/Taxotere chemos.  My immune system is back to protecting me and keeping me strong.  I am living an extremely fullfilling life and have every hope of a long and healthy one.  I am afraid that would not be the case, however,  if I had not aggressively treated my cancers with the current best treatment modalities available.

There is no reason you cannot combine certain alternative therapies along with the tried and tested gold standards also if you want.  You will find many oncologists open to the idea if you keep them aware of what you are taking so they can be sure there are no unsafe interactions. You say quality of life is more important to you than long term survival, but why not have BOTH?  You are 62 which is way too young to be settling for less. Leave the bucket list and 5 good years left for when you truly have no viable alternatives.

I know that at this early stage in your diagnosis it is so normal to be focused only on the possibility of dying.  We all do it, especially when we have a less favorable diagnosis with large tumors or many positive nodes.  I hear it in your posts when you wonder which is the worse way to die, from chemo or metastasis.  Getting a cancer diagnosis can very rapidly push us into a dark place ruled by fear.  It is normal and understandable, but we have to make a decision that if our life is worth anything at all, it is worth fighting for the best chance we can get at a full and long life.

Sorry my two cents are so long, but I will make 2 more comments.  Remember that you will always be more likely to hear the negative stories from the small percentage of cases that did not turn out well than you will the vast majority of successfully treated patients who have left cancer behind to go on and live their lives.  Do not let that mislead you into believing an inaccurate representation of the true effectiveness of the current standards of treatment.

And second, remember that none of us ever have a guarantee we will be alive tomorrow.  Life is fleeting and fragile for each of us, but when you look for God's will don't overlook God's ability to also work through and guide the physicians who are recommending your treatment plan to you. 

I truly wish the best for your treatment choices and outcomes.  Getting a second opinion is a great idea. Just know that you have lots of women here who have taken this path ahead of you and are willing to help anyway they can.  We will hold you up during those times of panic and dread and help you see that there is still a light at the end of the tunnel. Yes Kathy, your cancer is serious but it is fully TREATABLE!  Look at the ladies here who are living proof of that fact.  If I seem insistent it is only because I feel you need to BELIEVE that there is still a whole lot of life out there for you! 

Kathy - I'm glad you find the calculator helpful.  As for the Alternative Treatments forum, I don't hang out much there.  There are lots of quacks in this world selling snake oil, and I have a lot more faith in modern medicine.  That said, there are certainly some alternatives or "complementary" treatments/lifestyles/whatever that can accompany standard treatments and make you feel like you're doing good things for your body.  Eating healthy, exercising...all good stuff.  But when people start talking about coffee enemas and crazy stuff like that, my brain turns off. 

The reality is that if you look hard enough, you may find someone who has survived your advanced stage of cancer without standard treatment.  There are always a few "miracles" or "lucky ones" in this world.  But statistically, there are far more survivors who have accepted standard treatment and then gone on to live long lives and died of something other than breast cancer. 

Regarding quality of life, I have to say that dying of complications from breast cancer can be slow and painful.  Bone mets, liver mets, brain mets... statistically, you are more likely to suffer from any or all of these than to have lasting side effects from chemo. 

I am your age.  I was first diagnosed with breast cancer in June 2010.  Every oncologist urged me to do the chemo.  I was scared, just as you are, that the side effects would kill me.  I am diabetic and everything I read suggested that diabetics don't do well with chemo.  I had horrible morning sickness and still have motion sickness.  I was sure I'd do nothing but puke.  So I passed on it.  But by March 2011, the cancer was back, it was in my axillary nodes and my intermammary nodes.  I did the chemo because I really had no choice.  I do believe it saved my life.  I took every pill to counteract side effects.  At one point I was taking about 10 a day and I felt like a chemical waste dump.  But you know what, by October I was in full remission.  I have no long-lasting side effects.  I have grandchildren who seem to always have some bug.  I NEVER caught a single thing they exposed me to.  I didn't get neuropathy from the Taxol because I took the supplements that are being clinically trialed to prevent it.  I didn't lose a toenail or fingernail.  I didn't have excessive pain, or excessive fatigue.  I never puked once from chemo - the anti-nausea drugs are incredibly effective.  I did my best to eat as healthy as possible, I took a pre-natal vitamin to help keep my iron levels close to normal.  And today, I am 6 months post-chemo and I have a full head of healthy-looking curly hair. 

You might want to check out my blog to see what going through chemo was like, for me.  Maybe it will help you.  www.mch-breastcancer.blogspot.com

It's normal to be frightened.  Just don't be frightened to death.

Hugs,

Michelle

We are each unique!



I knew from the day I was DX'd that I would do everything offerd to me to fight with. If I hadn't and had a reoccurance I could not have faced my Hubby, Son or Granddaughter if I hadn't done everything possible.



I was 63 when DX'd IBC ER+/PR-, HER2-. I was DX'd 1 week after finding the enlarged node under arm and 17 days after DX started A/C to try to shrink and get margins. It worked and 2 weeks after last A/C had a mod. rad. mast. followed 3 later with 12 weekly Taxol. A week after last Tatarted 25 rad and started Femara. All of us do not have the luxury of time.

You mentioned God. My faith took me through a lot and played a part in my determination to do all that could be done. I do know that I will go when it is the time my Heavenly Father call me home. BUT until that time, I am here to learn what I need to return and my Drs were given to me and given the knowledge/talent to do all that they can for me. As I said - I'm IBC and I am 2+ yrs out of TX and still riding NED which is great. I can do anything I want - I'm very active. There are some minor inconviences that have developed but I'm still here and kicking.


Like I said - we're all different and our cancers are different.

I would do chemo AGAIN if I had to. I was 49 during treatment. I am so glad there is strong medicine to kill cancer. I know it shrunk my tumor. And I believe it killed any stray cancer cells that might have gotten beyone my lymph nodes. I'm two years past chemo now and feeling very healthy. Chemo is unpleasant, but doable.I did mine over 6 months and it took another 6 months until I felt pretty much back to normal again. But I enjoyed life the whole time I was in treatment. I did fun things with friends and watched movies I loved. I believe I will enjoy life a lot longer since I did chemo, rads, surgery. My hair grew back quickly. I plan to live another 30 years happy and healthy. I hope you have many happy decades in your future!   

Well put Linda!!!!  You really are an insperation to all of us, and your words were so beautifully said.

I really was personally blessed by your post. Hi to sherri, Miss you.

Love to all my siter's, stay strong, this is a disiease we do not have to die from. I know women in stage IV living long lives.........My prayers are with us all who are faced with these hard decisions..... The problem is,  there is always new info coming out, what works better on certian cancers. We need to throw  the book at it I say, personal opinion, but I was only 41 when dx, and this does make a difference, for sure............That I understand, but still 12 nodes is alot, I had ten, one node was over 2cm!!!!  I felt I had no choice, funny I did not even think about it. I went to battle, but, my kids were 4 and 8 at the time. I believe that can also take part in your treatment plans. I still agree with Linda Lou, at the end of the day only God knows if we will have tommorow...........................Blessings to you my sister, make the choice that brings you peace.

There really is so much hope, and life after cancer teatment............I promise.

Steph

Well - before TX I was osteopenia and was for close to 1 1/2 yrs after TX but now am osteoporosis. Did the TX make it worse - maybe but I have a strong family HX of it so who knows. So on Fosamax.



I have had arthritis in my upper back for many years but never a problem. About 1 1/2 yrs out of Tx, I started having more pain but Etodolac keeps it totally under control (unless I do to much). Perhaps TX had something to do with that - don't know it might have gotten worse in that time anyway.



Thyroid has decided it doesn't like working as good as it could. A synthroid a day takes care of that. Again something that might have happened anyway. When I was a bit over a year old my tonsilis were taken out and as was common way back then - my throat was radiated to keep tonsis from growing back (wrong y they grew back and I still have them). So because of the radiation to that area att such a young age, my thyroid has always been checked. So what caused it to decide it doesn't like working good - don't know. - could be the old radiation or the new.



I developed cataracts thhis past fall. Had surgery in Feb for them. Could TX have been involved/contributed sure but I've spent a lot of time outside and have very light green eyes - so who knows.



About 3 mths ago found out I'm hypoglycemic. Diet is managing it.



This is one all my Dr agree is Chemo caused - gall stones. I've never had any problems with them. Scan did not show them before A/C. Had another CAT the day of last Taxol and it showed gall bladder sludge (yes sludge is a medical term). About a year later I had another scan for something else and the sludge had turned to stones. I would not know I had them except for the scans.



Think that's it . As you can see - all are easily handlable. I can do anything I want - not as much as I did as a lot younger but still doable if I want to. Any/All of these things could have happen even without TX (well maybe not the gall stones). I know without TX I would not be here today. My Heavenly Father has other plans for me as HE gave me the Drs and ability to stay here til HE decides it's time for me to go home. I believe this with all my being. That said I know that not everyone will. That is how it should - we are each unique and tha is what makes us who we are. You asked - so I replied. You and only you can know what you believe is right for you just as only I can know what I believe is right for me.

Take care!