To Chemo OR NOT to Chemo

Angie2U · February 2010

RE said:
HERE GOES
Gabbie this is your decision and we all are holding you cyberly through. I wasn't going to go here but you asked the 1000 dollar question "doesn't anyone not have chemo". I personally know of two ladies who decided to have mastectomies only and forgo chemo. It did come back they went for chemo and it was too late. I also know of one gentleman who went to Mexico for spa type treatments rather than chemo and he is no longer here either. I am sure there are those who choose not to have chemo and survive I just do not know them.

Wishing you better days,

RE

Wishing you the best in your
Wishing you the best in your decision to have chemo or not!

Hugs, Angie

Alexis F · February 2010

Sher43009 said:
Welcome Gabbie, I agree with
Welcome Gabbie, I agree with the others and get another opinion. It will still your mind and give you more info to base your decision on. I'm IDC, ER/PR+ and HER2+ so I had to have chemo even though I have no node envolement. Good luck with making up your mind.
Sher

Wishing you good luck in
Wishing you good luck in whatever you decide! Keep us posted.

Lex♥

Gabbie99 · February 2010

WJGardner_Dec2009 said:
Chemo or Not
Wow, they took all twenty nodes? I had a lumpectomy (Jan 5, 2010)and 14 nodes removed 3 nodes had cancer one being the sentinel. Did they inject you with blue dye prior to surgery? I had my first chemo last week. So far i am doing well. I think the meds they had me take prior to and during chemo helped. They have come a long way with treatment. So were you given the option by your doctor to have chemo or not?

option
Thanks to everyone for the posts - I have pulled up so many clinical studies, (even paid for some) and so far am still leaning towards saying NO to chemo. I have heard from people who had chemo and cancer came back anyway. I had a lumpectomy, (several margins not clear) and sentinal node biopsy, (<.1mm tumor) first and then elected a mastectomy and more lymph node removal. WJ- they took an additional 20 nodes with no more evidence of cancer during the second surgery. I am surprised by your question "So you were given the option by your doctor to have chemo or not?" My oncologist made it clear from the beginning that I am the boss. He can give recommendations for standards of treatment and in the end NO doctor can tell us which will have to deal with cancer again and which of us will not. Of course - if my cancer was aggressive and more lymph nodes contained cancer there would be no doubt that I would go for chemo treatment....but as it is I am just really tired of surgery and want to heal without the hassle of chemo..especially when considering the 2-4% over the 85% chance that I already have that it will not come back. This is the perfect example of why so much more needs to go into research of this disease. They have been so aggressive in finding all of the little tumors early- but they still can't tell you which are going to cause problems and which will not. A lot of women go through lots of needless suffering just in case.

mimivac · February 2010

Gabbie99 said:
option
Thanks to everyone for the posts - I have pulled up so many clinical studies, (even paid for some) and so far am still leaning towards saying NO to chemo. I have heard from people who had chemo and cancer came back anyway. I had a lumpectomy, (several margins not clear) and sentinal node biopsy, (<.1mm tumor) first and then elected a mastectomy and more lymph node removal. WJ- they took an additional 20 nodes with no more evidence of cancer during the second surgery. I am surprised by your question "So you were given the option by your doctor to have chemo or not?" My oncologist made it clear from the beginning that I am the boss. He can give recommendations for standards of treatment and in the end NO doctor can tell us which will have to deal with cancer again and which of us will not. Of course - if my cancer was aggressive and more lymph nodes contained cancer there would be no doubt that I would go for chemo treatment....but as it is I am just really tired of surgery and want to heal without the hassle of chemo..especially when considering the 2-4% over the 85% chance that I already have that it will not come back. This is the perfect example of why so much more needs to go into research of this disease. They have been so aggressive in finding all of the little tumors early- but they still can't tell you which are going to cause problems and which will not. A lot of women go through lots of needless suffering just in case.

chemo is no guarantee
Some people who have chemo have their cancers return. Others do not. You are right to look at studies rather than on anecdotal evidence alone. Have you had the Oncotype test yet? That may make things even more clear. Can I ask where you are getting the 85% no recurrence figure and the 2-4% chemo benefit rate? Is that based on population statistics? Also, consider that while a lot of women might go through needless suffering, a lot of women have had their lives saved by chemotherapy treatment.

Rague · February 2010

Gabbie99 said:
option
Thanks to everyone for the posts - I have pulled up so many clinical studies, (even paid for some) and so far am still leaning towards saying NO to chemo. I have heard from people who had chemo and cancer came back anyway. I had a lumpectomy, (several margins not clear) and sentinal node biopsy, (<.1mm tumor) first and then elected a mastectomy and more lymph node removal. WJ- they took an additional 20 nodes with no more evidence of cancer during the second surgery. I am surprised by your question "So you were given the option by your doctor to have chemo or not?" My oncologist made it clear from the beginning that I am the boss. He can give recommendations for standards of treatment and in the end NO doctor can tell us which will have to deal with cancer again and which of us will not. Of course - if my cancer was aggressive and more lymph nodes contained cancer there would be no doubt that I would go for chemo treatment....but as it is I am just really tired of surgery and want to heal without the hassle of chemo..especially when considering the 2-4% over the 85% chance that I already have that it will not come back. This is the perfect example of why so much more needs to go into research of this disease. They have been so aggressive in finding all of the little tumors early- but they still can't tell you which are going to cause problems and which will not. A lot of women go through lots of needless suffering just in case.

We all have to make our own
We all have to make our own decisions but I could not face my Husband, Son or G-daughter IF I hadn't done EVERYTHING I could to lessen the chance of a reoccurance. In my case, my cancer was/is a very aggressive one with a rather high reoccurance rate. Even if I had less aggressive cancer with a low rate of reoccurance, I would still have taken the most aggressive treatment plan that my Drs. recommended. It's my life - the only one I have - and I will fight for it in every way that is offered/available to me.

Certainly, there is no guarantee of anything in life. It is hard going through treament but it only last for a time. At the beginning it seems like it is so long but it is surprising how fast it goes. Aug 26th, first chemo it seemed like it would never end but now I only have 2 more weeks of rads after 4 A/C each 2 weeks apart, mastectomy, 12 weekly
Taxol and now have finished 3 weeks of rads. Reading % stats is great but it comes down to each individual, your personal stats are either 0% or 100% - you will have a reoccurance or you will not have a reocurance.

Of course your Dr can not force you to have chemo (or any treatment for anything for that matter) nor can they be forced to give you a treament. We go to them for their knowledge and expertise.

Thoughts and prayers!

dctimmons · February 2010

Gabbie99 said:
option
Thanks to everyone for the posts - I have pulled up so many clinical studies, (even paid for some) and so far am still leaning towards saying NO to chemo. I have heard from people who had chemo and cancer came back anyway. I had a lumpectomy, (several margins not clear) and sentinal node biopsy, (<.1mm tumor) first and then elected a mastectomy and more lymph node removal. WJ- they took an additional 20 nodes with no more evidence of cancer during the second surgery. I am surprised by your question "So you were given the option by your doctor to have chemo or not?" My oncologist made it clear from the beginning that I am the boss. He can give recommendations for standards of treatment and in the end NO doctor can tell us which will have to deal with cancer again and which of us will not. Of course - if my cancer was aggressive and more lymph nodes contained cancer there would be no doubt that I would go for chemo treatment....but as it is I am just really tired of surgery and want to heal without the hassle of chemo..especially when considering the 2-4% over the 85% chance that I already have that it will not come back. This is the perfect example of why so much more needs to go into research of this disease. They have been so aggressive in finding all of the little tumors early- but they still can't tell you which are going to cause problems and which will not. A lot of women go through lots of needless suffering just in case.

You're right - it's your choice
and you're fortunate that you DO have a decision to make.

I so relate to your situation, having just had two surgeries (lumpectomory plus axillary node on Jan 25, then re-excision to get all margins clean on Feb 12. It's tiring, everything hurts and you just want it all to STOP!

However, unlike you, 4 of the 8 nodes removed were cancerous. I went into surgery, expecting - worst case - to be a Stage I and woke up a Stage IIIA, simply because of those darn lymph nodes.

I start chemo Feb 26, which is NOT AT ALL according to my plans. I should be flying cross-country to be at my sister's wedding in AZ this weekend. I cried many tears about that because it's so unfair to have to miss her wedding. But cancer's not fair and I want to live, which means I'll do ANYTHING to increase my odds of survival, and I'll do it with no delays.

One last thought: I know chemo's not fun and that there will be miserable moments for me in the weeks ahead, but no one dies from chemo.

Best of luck to you!

sunny_girl · February 2010

I chose not to take chemo
Hi Gabbie,

I chose not to have chemo and I certainly support your decision either way. I was diagnosed with IDC 3/08, one day after my 42nd birthday. I had lumpectomy with reexcision for a nearly 4cm cancer, ultimately with clear margins. I had micro-mets to the sentinal node, and no other nodes removed. Despite the "standard of care" recommending chemo (based on size), I chose not to have it. My canver was Grade 1 (Ki-67 was <1%), so my cancer was very slow growing. Chemo works much better on aggressive cancer. My Onco-Type score was 12 (8% risk of recurrence w/tamoxifen) - and if I read the chart correctly, I'd have a statistically higher chance of recurrence with chemo than without. My more controvertial decision was to not take Tamoxifen either. From my research, it appears that ~2/3 of women with breast cancer are cured by the surgery alone. The other treatments are done just in case you aren't one of them. The risks from chemo and Tamoxifen outweighed the benefits in my opinion for me (not necessarily for others). I may very well not be cured, and time will tell, but I don't believe chemo or tamoxifen would have made me healthier, and I won't regret my informed decisions.

That being said, I have a dear friend who was recently diagnosed with UPSC, a rare and very aggressive form of endometrial cancer (possibly associated with Tamoxifen). After reseaching her cancer, I plainly told her I thought she had no option but to take chemo, and I would take it too if I had UPSC. She had her 4th treatment yesterday.

Best of luck to you.

sparky72156 · February 2010

dctimmons said:
You're right - it's your choice
and you're fortunate that you DO have a decision to make.

I so relate to your situation, having just had two surgeries (lumpectomory plus axillary node on Jan 25, then re-excision to get all margins clean on Feb 12. It's tiring, everything hurts and you just want it all to STOP!

However, unlike you, 4 of the 8 nodes removed were cancerous. I went into surgery, expecting - worst case - to be a Stage I and woke up a Stage IIIA, simply because of those darn lymph nodes.

I start chemo Feb 26, which is NOT AT ALL according to my plans. I should be flying cross-country to be at my sister's wedding in AZ this weekend. I cried many tears about that because it's so unfair to have to miss her wedding. But cancer's not fair and I want to live, which means I'll do ANYTHING to increase my odds of survival, and I'll do it with no delays.

One last thought: I know chemo's not fun and that there will be miserable moments for me in the weeks ahead, but no one dies from chemo.

Best of luck to you!

Actually, people CAN and DO
Actually, people CAN and DO die from the effects of chemo.

Gabbie99 · February 2010

sunny_girl said:
I chose not to take chemo
Hi Gabbie,

I chose not to have chemo and I certainly support your decision either way. I was diagnosed with IDC 3/08, one day after my 42nd birthday. I had lumpectomy with reexcision for a nearly 4cm cancer, ultimately with clear margins. I had micro-mets to the sentinal node, and no other nodes removed. Despite the "standard of care" recommending chemo (based on size), I chose not to have it. My canver was Grade 1 (Ki-67 was <1%), so my cancer was very slow growing. Chemo works much better on aggressive cancer. My Onco-Type score was 12 (8% risk of recurrence w/tamoxifen) - and if I read the chart correctly, I'd have a statistically higher chance of recurrence with chemo than without. My more controvertial decision was to not take Tamoxifen either. From my research, it appears that ~2/3 of women with breast cancer are cured by the surgery alone. The other treatments are done just in case you aren't one of them. The risks from chemo and Tamoxifen outweighed the benefits in my opinion for me (not necessarily for others). I may very well not be cured, and time will tell, but I don't believe chemo or tamoxifen would have made me healthier, and I won't regret my informed decisions.

That being said, I have a dear friend who was recently diagnosed with UPSC, a rare and very aggressive form of endometrial cancer (possibly associated with Tamoxifen). After reseaching her cancer, I plainly told her I thought she had no option but to take chemo, and I would take it too if I had UPSC. She had her 4th treatment yesterday.

Best of luck to you.

thanks so much sunny_girl
Your post made gave me a real boost today. Really had made the decision not to do chemotherapy treatment and just wanted to hear from one person that made the same choice with a similar diagnosis. I too do not feel that I will regret my decision- no matter what. I have so much more knowledge from doing the research and am confident that my decision is informed and intelligent. I am still leaning towards the Tamoxifen and also personally know someone that developed a uterine problem when taking the drug. Fortunately for her they discovered the problem and it was relieved when she stopped Tomoxifen. Thanks for taking the time to post here. You are my positive thought for the day.

DebbyM · February 2010

Gabbie99 said:
thanks so much sunny_girl
Your post made gave me a real boost today. Really had made the decision not to do chemotherapy treatment and just wanted to hear from one person that made the same choice with a similar diagnosis. I too do not feel that I will regret my decision- no matter what. I have so much more knowledge from doing the research and am confident that my decision is informed and intelligent. I am still leaning towards the Tamoxifen and also personally know someone that developed a uterine problem when taking the drug. Fortunately for her they discovered the problem and it was relieved when she stopped Tomoxifen. Thanks for taking the time to post here. You are my positive thought for the day.

Glad you made your decision.
Glad you made your decision. This site is so helpful in so many ways. Good luck!

Debby

sunny_girl · February 2010

Gabbie99 said:
thanks so much sunny_girl
Your post made gave me a real boost today. Really had made the decision not to do chemotherapy treatment and just wanted to hear from one person that made the same choice with a similar diagnosis. I too do not feel that I will regret my decision- no matter what. I have so much more knowledge from doing the research and am confident that my decision is informed and intelligent. I am still leaning towards the Tamoxifen and also personally know someone that developed a uterine problem when taking the drug. Fortunately for her they discovered the problem and it was relieved when she stopped Tomoxifen. Thanks for taking the time to post here. You are my positive thought for the day.

I'm glad you feel better
Hi Gabbie,

I'm glad my story helped you feel better about your decision. It is hard enough to get a cancer diagnosis, but then having to immediately make such important decisions is daunting. You have to become an expert on something you previously knew nothing about. I'm a researcher by profession, so I went into overdrive reading everything I could find -- but even so it was a tough decision. I had second opinions for my pathology and a second oncologist consult. But ultimately you have to listen to your inner voice. If you did your research, understand your cancer, talked to your doctors, and you feel good about your decision, then it is absolutely the right thing for you to do.

Best luck with everything.

Megan M · February 2010

sunny_girl said:
I'm glad you feel better
Hi Gabbie,

I'm glad my story helped you feel better about your decision. It is hard enough to get a cancer diagnosis, but then having to immediately make such important decisions is daunting. You have to become an expert on something you previously knew nothing about. I'm a researcher by profession, so I went into overdrive reading everything I could find -- but even so it was a tough decision. I had second opinions for my pathology and a second oncologist consult. But ultimately you have to listen to your inner voice. If you did your research, understand your cancer, talked to your doctors, and you feel good about your decision, then it is absolutely the right thing for you to do.

Best luck with everything.

Good luck to you Gabbie! I
Good luck to you Gabbie! I am sure that you feel better to finally make your decision.

Megan

susie09 · March 2010

sunny_girl said:
I'm glad you feel better
Hi Gabbie,

I'm glad my story helped you feel better about your decision. It is hard enough to get a cancer diagnosis, but then having to immediately make such important decisions is daunting. You have to become an expert on something you previously knew nothing about. I'm a researcher by profession, so I went into overdrive reading everything I could find -- but even so it was a tough decision. I had second opinions for my pathology and a second oncologist consult. But ultimately you have to listen to your inner voice. If you did your research, understand your cancer, talked to your doctors, and you feel good about your decision, then it is absolutely the right thing for you to do.

Best luck with everything.

Glad that the posts made you
Glad that the posts made you feel better. The women here can do that! Good luck to you!

Eil4186 · March 2010

My lymphnodes were clear,
My lymphnodes were clear, but my tumor was invasive and about 1.5cm. Even though cancer cells are not present in the nodes, there is still the possibility that some could have made it to a blood vessel. I had 8 rounds of chemotherapy, rads, and am now on tamoxifen.

I feel comforted knowing that we did everything possible to prevent a recurrence in the future. You must do what is comfortable for you. If you truly trust your docs, then I would go with thier recommdation. Good luck, and please keep us updated.

Gabbie99 · March 2010

Eil4186 said:
My lymphnodes were clear,
My lymphnodes were clear, but my tumor was invasive and about 1.5cm. Even though cancer cells are not present in the nodes, there is still the possibility that some could have made it to a blood vessel. I had 8 rounds of chemotherapy, rads, and am now on tamoxifen.

I feel comforted knowing that we did everything possible to prevent a recurrence in the future. You must do what is comfortable for you. If you truly trust your docs, then I would go with thier recommdation. Good luck, and please keep us updated.

second opinion
I have decided to not decide until after receiving a second opinion. didn't realize how hard this was weighing on me until I set up a second opinion appointment. Going to University of Wisconsin Carbone Cancer Center on March 19th and feel like a weight has been lifted. Of course, in the end I will still have to make the decision- but I will feel more informed.

Balentine · March 2010

to do chemo or not
Dear Gabbie,
Did you ask your doctor for percentages? They should have told you that by doing the chemo it would give you a certain percentage of recurrence compared to not taking the chemo. I also asks my surgeon and oncologist their advice and opinion. By doing chemo it is giving me an extra 9% chance that the cancer will not reoccur and from everyone I have talked to in the support networks and doctors, they said no question...that I should do it. My age is also a factor...I am 49 so longevity is a factor. If I were 60 or 70 I may have chosen not to do it. With the chemo and tamoxifen I will have a 92% success rate. I have Invasive ductal carcinoma 2.2cm lump, had mastectomy 1/19. I start my chemo on 3/15 for 4 treatments. Taxotere and cytoxan. In the end....as everyone has said...it is your decision but I felt like you did...that if I don't do it and in 5-10 years it returns how would I feel?? Pray about it. I know you will make the right decision

Lorrie

Rague · March 2010

Balentine said:
to do chemo or not
Dear Gabbie,
Did you ask your doctor for percentages? They should have told you that by doing the chemo it would give you a certain percentage of recurrence compared to not taking the chemo. I also asks my surgeon and oncologist their advice and opinion. By doing chemo it is giving me an extra 9% chance that the cancer will not reoccur and from everyone I have talked to in the support networks and doctors, they said no question...that I should do it. My age is also a factor...I am 49 so longevity is a factor. If I were 60 or 70 I may have chosen not to do it. With the chemo and tamoxifen I will have a 92% success rate. I have Invasive ductal carcinoma 2.2cm lump, had mastectomy 1/19. I start my chemo on 3/15 for 4 treatments. Taxotere and cytoxan. In the end....as everyone has said...it is your decision but I felt like you did...that if I don't do it and in 5-10 years it returns how would I feel?? Pray about it. I know you will make the right decision
Lorrie

I was 63 yrs, 1 month and 13
I was 63 yrs, 1 month and 13 days young when I was diagnosed and never was there a thought of not doing all I could do with help of modern medicine. As I have/had IBC the odds of it coming back are rather high. If 'it' comes back in a year, 5 years or 10 years, as long as I am at least relatively healthy otherwise, I will fight as hard as I have fought/am fighting now. If I take after 1 Grandmother and 3 Great Grandmothers I have another healthy and active 30+ years - so I intend to live every one of those years that I can and remain active as they did - if it takes fighting and the miracles of modern medicine - I'll do whatever it takes.

To me it's not a matter of the % dealing with the populace - for me it's either 0% or 100% - I will either have a reoccurance or I won't - I won't have a 25% of it back or a 75% back - it either doesn't come back or it does for me so it'a 0% or 100%.

But, of course, we all have to make our own decisions.

Angie2U · March 2010

Gabbie99 said:
second opinion
I have decided to not decide until after receiving a second opinion. didn't realize how hard this was weighing on me until I set up a second opinion appointment. Going to University of Wisconsin Carbone Cancer Center on March 19th and feel like a weight has been lifted. Of course, in the end I will still have to make the decision- but I will feel more informed.

Glad you are getting a 2nd
Glad you are getting a 2nd opinion Gabbie. Good luck and let us know what the oncologist says.

Youcandothis · March 2010

Gabbie99 said:
option
Thanks to everyone for the posts - I have pulled up so many clinical studies, (even paid for some) and so far am still leaning towards saying NO to chemo. I have heard from people who had chemo and cancer came back anyway. I had a lumpectomy, (several margins not clear) and sentinal node biopsy, (<.1mm tumor) first and then elected a mastectomy and more lymph node removal. WJ- they took an additional 20 nodes with no more evidence of cancer during the second surgery. I am surprised by your question "So you were given the option by your doctor to have chemo or not?" My oncologist made it clear from the beginning that I am the boss. He can give recommendations for standards of treatment and in the end NO doctor can tell us which will have to deal with cancer again and which of us will not. Of course - if my cancer was aggressive and more lymph nodes contained cancer there would be no doubt that I would go for chemo treatment....but as it is I am just really tired of surgery and want to heal without the hassle of chemo..especially when considering the 2-4% over the 85% chance that I already have that it will not come back. This is the perfect example of why so much more needs to go into research of this disease. They have been so aggressive in finding all of the little tumors early- but they still can't tell you which are going to cause problems and which will not. A lot of women go through lots of needless suffering just in case.

Chemo
I'm 66, dx 18 mo ago, had lumpectomy, 14 nodes removed, micro rumors in 2 sentinals but nothing further thank the Lord. Clear margins, est+. Did chemo/radiation and now on arimidex. Always was active, continued workouts thru all treatment, think it helped a lot. Would get reaction 2 days after treatment but do ok in between. Used acupuncture 2x/wk. For me radiation was worse than chemo the fatigue was overpowering. I'll be going back to competing in triathlons this summer, 2 years after dx. I want every day I can get, every chance I can get. It's definitely a personal decision, but there's a lot of support out there. It's too important an issue to let fear be the decider. Good luck!

waffle8 · March 2010

Balentine said:
to do chemo or not
Dear Gabbie,
Did you ask your doctor for percentages? They should have told you that by doing the chemo it would give you a certain percentage of recurrence compared to not taking the chemo. I also asks my surgeon and oncologist their advice and opinion. By doing chemo it is giving me an extra 9% chance that the cancer will not reoccur and from everyone I have talked to in the support networks and doctors, they said no question...that I should do it. My age is also a factor...I am 49 so longevity is a factor. If I were 60 or 70 I may have chosen not to do it. With the chemo and tamoxifen I will have a 92% success rate. I have Invasive ductal carcinoma 2.2cm lump, had mastectomy 1/19. I start my chemo on 3/15 for 4 treatments. Taxotere and cytoxan. In the end....as everyone has said...it is your decision but I felt like you did...that if I don't do it and in 5-10 years it returns how would I feel?? Pray about it. I know you will make the right decision
Lorrie

chemo or not
I am in the process of trying to decide about my treatment...My doctor told me because I am in the "grey" area that those percentages were not available..... She did tell me that if I chose to have chemo it would be same type and length as yours....My head is spinning from reading all these blogs..It is so over whelming....Hope you are feeling well after your first treament....

To Chemo OR NOT to Chemo

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