Chemo or No Chemo Truly Cant Decide

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jhalvors
jhalvors Member Posts: 3
edited June 2014 in Stage I Breast Cancer

My father was DX with breast canncer 8 years ago. Even though we have no other family history of breast cancer in my family I wanted to be proactive as it is rare for men to have breast cancer. Had my baseline mammo when I was 37 and was normal and was told not to come back till I turned 40. I turned 40 early this year and went for my second mammo in March 2010. I received a call back for additional pictures of the Rt breast. Second set of films showed microcalcifications (80% chance of being nothing) and a subsequent BX showed (I was in the crappy 20%) 8 cm of DCIS in the Rt breast. Scary but 100% treatable and not life threatening. Had a lumpectomy in April 2010, and my world took a turn for the worst. Pathology showed 0.4mm of invasive grade 2, ER/PR +, HER - cancer with angiolymphatic invasion was reported present on path. Had genetic testing and was BRCA 1 normal BRCA 2 was "suspected deleterious", which meant although not 100% positive it should be treated as positive. In light of this I opted for a double mastecomy in early June just to be on the safe side and the pathology from this surgery showed to have no additional new invasive cancer since the April lumpectomy and the nodes were clean and negative. Had OncoDX test done and result was 21, which put me in the low end of the intermediate group (gray zone). Radiation was ruled out since double MX took care of the margins. Primary Oncologist is recommeding 4 cycles of T/C due to the angiolymphatic invasion found on the path report in April. She said if that had not been present she would not recommend chemo as the tumor was so small. However, got 2nd opinon from a Oncologist at Stanford, and they said they could recommend chemo but would not push (as my primary onoclogist seems to be doing) and they seem to be making this determination based upon tumor size even though angiolymphatic invasion was noted. Stanford also suggested Tamoxifan & Zoladex might be a good way for me to go instead of chemo, but my primary oncologist never suggested this. But of course Stanford said there is no right or wrong choice and it is ultimately my decision. That is what I am having a problem with. I dont have any children and was hoping to try this year (hence the check-up at my b-day) when all this was discovered. A fertility DR stated I have a 100% chance of going into early menopause if I do chemo, which is of course a major concern for me. If I already had kids the decision of chemo would already have been made. However, the reality is I dont and would still like to. So now what do I do. Tamoxifan is a given as both Oncology Drs seem to agree that the majority of reduction of reoccurance (7%) will be from the hormone therapy. Meanwhile chemo would only offer and additional 3%. I would be interested in knowing if any women are in a similar situation as mine. I really and truely do not know how to decide. It seems if I do what my primary onocolgist wants I will have to give up my dream of a child that is biologically mine, but if I dont  do chemo and distant reoccurance occurs down the line how do I reconcile that I didnt do all that I could when I had the chance. Is anyone going through this as well?

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  • flash
    flash Member Posts: 1,685
    edited July 2010

    I am so sorry you are having to deal with such a tumultuous decision.  Personally, I'm not sure how I would react but it will need to be what is right for you.  I already have kids so my decision for chemo  was easy.  Questions you need to ask yourself:  would it make a difference to you if you had biological kids or adopted kids.  If it came back, would your possible kids still have a stable life and the kind of life you would like them to lead?  they are hard questions but hey really are part of your decision and only you can decide what's really important. 

    I will remind you that statistics are only statistics.  You could be the one that doesn't get a recurrence.  Also remember that the statistics are constantly improving. Just in the 3 years I've been here, it's already changed dramatically.

    I hope you find an answer to your dilemma.  I would also check on the under 40 discussion forum.  You have a better chance of seeing if anyone else has been in your predicament. good luck, i hope it turns out well for you.

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  • gfbaker
    gfbaker Member Posts: 173
    edited July 2010

    What a tough decision you have to make. I already had my kids so that was easy. A couple of things to consider/debate. Chemo usually does put you in early meno, but you can come out of it, as I did after a year. And I don't think you can take tamox while you are pregnant, so you would have to go without further treatment until you get pregnant and have your baby.

    I had my kids close together, and when my 2nd was 10 months old, I was diagnosed. I am convinced that having 2 kids close together (19 months apart) was what made my cancer go crazy - I'm er/pr+ too.

    Some women who find out that they have cancer & pregnant can do chemo after the 1st trimester. I don't know if this is something you can consider too. I would find an onc/gyn and discuss all your options so you can make the best decision for yourself.

    Good luck!

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  • jhalvors
    jhalvors Member Posts: 3
    edited July 2010

    Thanks for the tip. Message boards are new to me, so I re-posted under the 40s section as you suggested. Thank you for your reply as well as it is much appreciated and taken to heart.

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  • Mare-Willi
    Mare-Willi Member Posts: 10
    edited July 2010

    God bless you, you have a big decision to make. Of course it is *your* decision but I think it is helpful to hear a variety of feedback when trying to make a decision. Here's mine: my percentage was a lot higher than a measly 3 % so I went for the chemo (T/Cx4) after a mastectomy in Oct 08.

    I will NEVER go through chemo again.  I did most of my real research after the chemo, unfortunately.  Oncologists focus on relative numbers rather than absolute numbers so you are dealing with skewed statistics. Also, they are the only docs who actually make a profit off the the "drugs" they prescribe. But they're not really drugs; they are poison. Literally.

    Anyway, certainly be prepared for early menopause (which is wonderful in my opinion. I had not had a period in 7 years due to a uterine ablation a long time ago- it was losing the PMS that I really like). You also may have to deal with side effects like major cognitive difficulties, debilitating fatigue that can last a very long time, and a whole lot of other problems that make hair loss seem like a picnic in the park. 

    If I had not had my kids already there is no WAY I would undergo chemo. Not just for the fertility, either. Even if you adopt, you need to be able to raise the children. I really feel that the chemo trashed my immune system and I now spend a lot of time building UP my immune system instead. This includes a lot less drinking ( I used to enjoy one glass of wine a day but now it's about one a month), no meat, much less sugar, regular exercise, better sleep habits, and getting rid of a dead-end relationship. I am working on getting a new job with less stress as stress is carcinogenic. So I feel I taking positive steps to keep healthy. Chemo is nothing but negativity from my perspective. Read up on it. Good luck. Try to remember that you will be stronger for having gotten through this. 

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  • gillyone
    gillyone Member Posts: 1,727
    edited July 2010

    I'm really responding to Mare-Willi's post. Just to let you know not everyone feels as she does about chemo. There are MANY of us on the boards who have no regrets about having chemo despite the side effects. I, for one, would do it again if I needed to. I can't help you with the decision as to whether you should have chemo in your situation, but if you do decide to go ahead, please know that everyone reacts differently. You may have many SEs to deal with or very few, but most people would agree (I think) that chemo is doable.

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  • gillyone
    gillyone Member Posts: 1,727
    edited July 2010

    Just realised this is a stage I, II thread. Apologies if I have butted in where I shouldn't.

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  • ruthbru
    ruthbru Member Posts: 57,235
    edited July 2010

    I also wanted to say that not everyone has a terrible chemo experience; it is not fun, but doable. I worked throughout (only missing infusion days), and did everything else that I wanted or needed to do also. Just a (sad) thought about kids......one should not get pregnant on tamoxifin, and if you take it for the prescribed 5 years.....you will be pretty much out of the biological child phase of life even without chemo. I guess I would do the chemo and give myself the best chance of being around in 5 years. (and I chose to do chemo myself because if it came back and I hadn't......I don't think I would be able to handle that). Best of luck with these hard, hard decisions. Ruth

    edited to note that I was IIA instead of IA, so having chemo was an easier 'yes' answer for me.....

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  • Mare-Willi
    Mare-Willi Member Posts: 10
    edited July 2010

    I totally agree with the others that not everyone has a dramatically bad experience. I apologize if I got a little bit heated in my earlier post.

    My real message is to do your research, not just listen to oncologists, who, as I said, are profiting from chemo and who also generally know nothing about alternative medicine.

     Secondly, it's not just the SEs that you notice (nausea, fatigue, mouth sores, constipation, etc.) that you should be aware of but the long term negative effect chemo has on your entire immune system. Your research will give you plenty to consider. I learned a lot from "Healing Cancer from the Inside Out," which would be a good starting point for you (by Mike Anderson, I think?).

    I do wish you the best and I know that you'll feel better once you actually make the decision and move forward with whatever you decide. I'm going to keep you in my prayers; I'm sure others are, too.

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  • Susie123
    Susie123 Member Posts: 804
    edited July 2010

    I'm so sorry you're dealing with this. The cancer treatment alone is a huge decision, but couple that with fertility issues and it becomes almost an impossible decision. I didn't have kids until mid life, not by choice, I just couldn't get pregnant. We had been married for 13 years when I gave birth to our oldest son, after going through the fertility tests and treatments. I know how hard it is, wanting kids, but not being able to have them. I honestly don't know how I would handle that if it had overlapped my BC. You have a really hard decision that only you and your husband can make. Please know that you will be in my thoughts and prayers. I'm so sorry. This is one of those moments in life that just stinks.

    ((( HUGS )))

    Susie

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  • in_cognito
    in_cognito Member Posts: 429
    edited July 2010

    It really is a tough decision to make and one that you have plenty of time to still think about.  I think we all look at numbers/statistics/percentages differently.  For me, the 3% benefit of chemo was a huge number.  I had a 1% chance of getting BC at my age to begin with so all numbers are out the door for me.  If I were single with no kids I may have possibly opted out of chemo, but would have probably spent a lot of time and research on it. 

    In all honestly, BC is such a crapshoot.  No one knows how the decisions we make today will impact our outcome in 5-10 years.  If you had a recurrance 5-10 years from now, would you regret that you did not do chemo?  I think that is the main question to ask yourself. 

    Lots of people do great on chemotherapy.  A lot of times, people that have the nasty side effects are the ones that seek comfort in finding out more information online or on discussion boards - so hearing about bad side effects seem like the norm.  Lots of people will tell you that chemo sucks, but is doable.

    You can also visit the YSC message boards - I think there is a category about pregnancy after BC.  You might find some help there.   

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  • makingway
    makingway Member Posts: 799
    edited July 2010

    jhalvors-I have to agree with Mare-Willi about the whole chemo route. It is an 'industry' in which many are profiting tremendous amounts of money-oncologists, radiologists, laboratories, hospitals and most of all, the Pharmaceuatical Industry. We're all scared of the diagnosis of cancer, and the death sentence attached to it. You do realize that most of these deaths occured AFTER these people had done chemo. It doesn't give much credence to chemo being so great afterall... What the medical industry would have you believe is that chemo, radiation and hormone blockers are the only way not to die. It's not, there are alternatives out there and people are using them. Unfortunately the medical establishment discounts the effectiveness of anything they have no control over. I hope you get a chance to read my post before it gets deleted, because the posts are monitored here-by the medical establishment. The book Mare-Willi is refrring to is by Bill Henderson. I've loaned it to someone, but I think the title is 'Healing Cancer Gently'.

    I was recommended chemo and radiation, as well as the hormone blockers. I've declined them after much consideration. After many hours of reading, none of them appeared to be as safe or as effective to warrant their use. But, I'm not just doing nothing. I've changed my lifestyle in many ways. If I have a recurrence at least I know I didn't die because chemo ruined my immune system. We all die, eventually. Send me a private message if you'd like links to some of the articles I've reviewed.

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  • Poppalicious
    Poppalicious Member Posts: 24
    edited July 2010

    jhalvors - I am sorry to hear about your situation, it's tough!  I too was recently in a similar one - am married, focused on trying to get pregnant for the first time this year and was given the option of chemo as my profile fell into a treatment gray area. 

    It took us FOREVER to decide, and in the end I opted for zoladex and chemo (have had 1 cycle out of 4, and so far it has been fine but it is still early days yet - have my next one tomorrow and looking forward to it as will mean I am almost halfway there, yay!)

    What I have learnt from this experience is that [1] unfortunately no one can tell you what to do (even though that is what we want at the time!), [2] that no choice is right or wrong - you're doing the best with what information you have at the time (especially considering the scientific advances made all the time in this area) and hindsight is always 20/20, [3] that you'll have doubts regardless of the path chosen so it's important to firmly believe in your final decision (i.e. don't feel like you need to justify it to friends and family), and [4] that I am one hell of a lucky girl to be with a guy like my husband!

    For me, having a heart-to-heart with my husband on our options (looking pros and cons) and weighing these up against possible realistic future scenerios (e.g. what if...) helped; along with getting second and third opinions on treatment options to put things into perspective vs. what was personally important to me/us (I am happy to discuss more, PM me if interested.)

    Hope this helps, just remember you have a hugely personal decision to make and that there is no right or wrong. 

    Wishing you all the best, and may you have a future filled with much love and children! 

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  • zoegr
    zoegr Member Posts: 113
    edited July 2010

    I'm in the same age with you. I have already one child but i would like to have a chance to have another one. Now it seems very difficult since i have to be on Tamoxifen for 5 years. I don't even know if i have any eggs left after chemo.

    What you could do is to have some eggs frozen. Ask your doctor about this option.

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  • ruthbru
    ruthbru Member Posts: 57,235
    edited July 2010

    Zoe, that is a great, great idea to check in to!

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  • Shrek4
    Shrek4 Member Posts: 1,822
    edited July 2010

    I am a IIb - with one lymph node involvement and no vascular invasion. I went through the same hard to take decision tiem you are going through. Especially knowing that a very strong positive ER/PR (mine is 98/95) doesnt' have any real benefit from chemo, only from the anti-estrogen therapy. But I also read many studies that show that distant recurrences (metastasis) usually are NOT ER/PR +. So I decided to go with it. I am done with 3 tx and have one treatment left. It was a hard road. But I am not sorry I did it. I consider it just one more precaution I took for this not to come back.

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  • Mare-Willi
    Mare-Willi Member Posts: 10
    edited July 2010

    jhalvors, you may have already made your decision by now but I am just checking in once more to reply to a couple of makingway's comments.

    makingway, the book I was referring to is not the one you mentioned, the one I read that set me on my path to supporting rather than destroying my immune system is in fact "Healing Cancer from the Inside Out" and I double-checked - the author is Mike Anderson. He is a medical researcher and the book is packed with footnotes referencing various studies. He is not some far-out alternative type but rather someone who has carefully researched the history of cancer treatments. It is a huge eye-opener.

    Just search the title of the book and you can see videos on YouTube that will give you a taste. I personally could not follow the vegan diet he preaches but have made a  lot of positive changes that I CAN live with. 

    And one other thing that really struck a chord with me makingway, was your comment that "we all die eventually." Although this is not what jhalvors wants to hear right now, it exactly this truth that has helped me to keep things in perspective.

    Each of us is born with no guarantee of a long and healthy life. This knowledge is what should make each of us redouble our efforts to use what God-given time we are granted on this earth to live in such a manner that when we are at the end of our life we can honestly say we have LIVED. This belief is how I can now forge ahead with optimism and and love- a major turnaround from one year ago when I felt so sick and depressed I honestly assumed it was just a matter of time before the cancer recurred - and I really didn't care too much about it. 

    Though I am no longer with my long-term boyfriend and do not yet have my energy back (making taking care of my house + working full time an ongoing challenge), I am truly happy to be alive. And no matter whether the cancer recurs  in the future I can say I am living my life NOW. When you think about it, NOW is all we have. I am grateful for my many blessings, including having a forum to obtain and offer support to fellow BC victims.  God bless you.

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  • cookiegal
    cookiegal Member Posts: 3,296
    edited July 2010

    I had the toughest time deciding...I was an oncotype 22. Ultimately I tried to live with each decision, and I decided not to do the chemo. It's not for the faint of heart, sometimes I feel like I decided to go through life without a safety net, but I had a deep feeling chemo was not the right choice for me. Even if I have a metastisis, I will not regret my choice...at 2-4% off of a 14% DR rate, there is a significant chance I would have had the recurrance anyway.

    Still, chemo is the right choice for many, good luck no matter what you decide.

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