Trouble making a decision

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  • dexxy
    dexxy Member Posts: 229
    edited June 2011

    so sorry Sandy115, being HER+ sucks.  I know I'm lucky to be able to take tamoxifen.  I'll think good thoughts on your node surgery, when will that be?

  • sandy115
    sandy115 Member Posts: 172
    edited June 2011

    The Dr said in 2 weeks but Im not sure now as I see the onco in 3 weeks they have to make up their mind weather its treatment 1st or surgery I find out Thursday.You know I think I wrote my Her dx  wrong because the Dr did say I would take Tamaxifen after the treatments and because I was Her + and Prog + it was good to have cemo.I didnt get my patholigy report last week @ the last appointment with the BS as I just cried through the whole appointment.I had myself convinced I was just having Radation no more surgery or chemo so I did'nt listen to everything.

  • sgreenarch
    sgreenarch Member Posts: 528
    edited June 2011

    Hi. I was where you are, last summer. Very tough decision. 49 years old and i wanted to do everything possible. Who has breast cancer and doesnt do chemo if they could? However, my oncotype was 17 and i went to the three best oncs at the three main cancer centers in my area. What helped me make my decision was that they all concurred unanimously that chemo wouldnt do enough for me to outweigh the risks. In fact one dr said it would be a 'crime' to give someone in my situation chemo,( and she happens to be a survivor herself.) She also recommended an hour of exercise a day and ive radically altered my diet to be much healthier.

    I recommend getting as many opinions as you need to build a concensus. Impossible to become a BC expert on your own.

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

      First of all, none us can really tell you what to do.  You have to gather your info, discuss it with your onco. weigh the recommendations and decide what you feel is best for you and hopefully you will make the right decision.  I was diagnosed at age 40 way back in 1990. Cancer research has come a long way since then. My tumor was less than a cm and I really was not even classified as a stage.   I went with a modified radical mastectomy and immediate reconstruction on my surgeon's advise since he felt that way we would be sure to get it all.  I had 19 lymph nodes removed, all of which were negative.  The onco I consulted with felt I did not need chemo and there was some discussion of tamoxifen, but at the time they were still doing trials with it and I was told it would not reduce my odds of recurrence that much and since I was ER+PR+ if it did recur, it could then possibly be used as treatment later.  My cancer was a very slow growing one. I was happy I didn't have to do chemo since I had always heard horrible things about side effects and I didn't want to lose my hair. I went for check ups and passed the magic 5 yr number.  I would guess it was maybe a year or so after than I started having pain in my sternum...complained about this to GP who sent me back to onco and PS and both assured me my cancer had been so small that I was worrying about nothing, maybe had pulled a muscle...and the pain did go away....but it would come back about every 6 months...this went on for maybe a year and  1/2....the last time it did not go away and finally I had a bone scan which revealed cancer in my sternum.....CAT showed cancer to be in my left lung as well as a spot in my liver. This was 1998, 8 years after my initial diagnosis and treatment.  I have been Stage lV for 13 years now and have been very very fortunate in that not only am I still here, but I have been living a pretty normal life and am still able to work.   However, once you get to Stage lV there is no going back and you are always going to be on some form of treatment just to keep the cancer under control. Chemo is not fun, but it is doable. Knowing what I know today, if  had to do it all over again, I would do chemo, would then go on tamoxifen as a preventative and would possibly be cancer free today and able to say I HAD breast cancer, way back in 1990. Again, no one can tell you what to do, but I feel that if there is any way to prevent recurrence, that is the way to go. Unfortunately there are no guarantees with anything. Good luck to you. Marybe

  • ma111
    ma111 Member Posts: 1,376
    edited June 2011

    Part of the reason that the survival rate for breast cancer has gone up is they now understand that in people like you, re accurance would be prevented with chemo. It is a personal decision weather or not to do it.

    In advance stage where we die with or with out it is easy to understand not doing chemo, but your survival chance increases a lot with chemo. For my stage they would just prolonging life.

    My advise young stage 2, do the chemo. Also remember that some herbs counter act the effects of the chemo. Tell you onc all the herbs you take. The ones that help clean/clear the liver, prevent the chemo from working and do not help decrease the side effects of chemo.

  • Megadotz
    Megadotz Member Posts: 302
    edited June 2011

    Dexxy,

    Please check with your radiation oncologist about taking any supplements or herbs during radiation. Items as simple as Vitamin C supplements can interfere with the effectiveness of the treatment.  I was told a multivitamin was OK, but nothing else.

    Since you're ER+ follow through on the tamox,  ER+ cells feed on estrogen and at the very least you need to starve out any that are left behind.

    With an intermediate oncotype, you have trade offs to look at.   I've recently seen several folks who went with radiation only have recurrences, so I'm a bit wary of that route right now. 

    Do look through the main portion of the sites and make an informed decision.

    Take care,

    Meg 

  • kittymama
    kittymama Member Posts: 139
    edited June 2011

    Dexxy, one more thing: my onc did tell me that if my oncotype came back in the higher end of the low range or in the intermediate range, that she would recommend chemo.

  • flannelette
    flannelette Member Posts: 984
    edited June 2011

    I would also say go for chemo. IMHO, the hardest part has been the darned arimidex!

    I think you mentioned homeopathic remedies. I think they're perfectly ok as they are not "herbal" - they are pure energetic medicine. I used one at the time of my MX (on consult with a homeopathist) for "cuts, wounds" and I healed in no time - nurses were amazed. Of course, we don't really know if the remedy had any effect, but it made me feel better, like I was more in control. Doing everything I could.

    I've found an intersting thing about chemo chemicals. Many are derived from trees. Like Taxotere.Certain trees emit chemicals - they cannot run from enemies, so must produce their own poisons to survive insect attacks etc. My property is surrounded by black walnuts, which secrete juglone, because they have to.In the book The Global Forest, written by a world-renown expert on trees and  a biologist, it say that if a black walnut ball (lime green, smells very pungent) is held in the crook of a child's arm, that will confer him immunity against childhood leukemia. Iam fascinated by this. the same for the "phytochemicals" in veggies & fruits - their defence system - red, blue etc. since they can't run away. so we use them to good effect in our bodies by eating them. Chemo seems extreme, but put in this context, perhaps not so nasty after all? I too found it quite doable.

    Best of luck

    Arlene

  • dogsandjogs
    dogsandjogs Member Posts: 1,907
    edited June 2011

    I thought chemo was only if nodes were involved. The oncs told me I didn't need it and I thought that was the reason.

  • memory
    memory Member Posts: 106
    edited June 2011

    I wish I could help you. An intermediate score would have been my worst nightmare: a high or low one would make the decision for me, I thought. fortunately, I was a 12, and the onc told me that not only would the chemo been of no benefit, it may have hurt me. But an intermediate score -- well, you're only 43, it's a grade 2. I'd do the chemo.

  • dexxy
    dexxy Member Posts: 229
    edited June 2011

    Hi ladies, thanks for all your input

    just to clarify my homeopathic Dr. work with only cancer patients and also is trained in western medicine.  He has an excellent relationship with well known MO as well.  Who also happens to be on vacation!

    I've already decided I need to see another MO, last night when I talked with my current one, she specifically told me she could not allow me to do the coldcaps, not because they don't have a freezer but because she was worried that if other patients saw me with it they would want it to and it could disturb the community there.  I get it but was still shocked.

  • mdg
    mdg Member Posts: 3,571
    edited June 2011

    I am sorry about your situation....I too am stage one and 45.  This whole BC threw me for a loop as I am a healthy person - fitness professional too so I eat well and exercise daily.  I never would take aspirin for a headache unless it was super bad!  I had to make a decision on chemo as I was in a gray area.  Some med onc's said no chemo and some said chemo.  I was so confused but I had to make a decision.  I guess my philosophy was chemo is poison, but so is BC.  I already had BC in my body and figured I wanted that poison out more than anything.  I also have a 4 year old son and I wanted to do everything I could possible to rid my body of cancer.  I know there is no guarantee but I decided on chemo.  I did TCx4.  It was not that bad.  I exercised 5 days a week through chemo and did not miss a day.  I was back to teaching aerobics 2 weeks post chemo.  My class did not even know I had BC - I never told them and I was able to keep my hair so I never felt it necessary to discuss it publically with my fitness class.  I wish you luck with your decision.  THere is not just one right answer......there is only the right answer for YOU.  You will wade through this and figure out what is best for you.  Best of luck!

  • flannelette
    flannelette Member Posts: 984
    edited June 2011

    srbreastcancersurvivor - I think chemo is chosen depending on your stage. If your tumor is large ( don't know exactly, but there is a specific size) and no nodes, you still get chemo. I had Mx, margins clear, no vascular involvement, no nodes, still had chemo. And glad of it.

    Arlene

  • flannelette
    flannelette Member Posts: 984
    edited June 2011

    I remember my onc saying - metastases are like thistle down blowing in the wind - they are tiny & invisible and could be carried anywhere. And then he said "stage 4 is incurable". short and to the point. I heard him loud & clear.

    Arlene

  • fightn4fam
    fightn4fam Member Posts: 48
    edited June 2011

    dexxy,

    My tumor size was 2.7 cm.  At first they believed it was 1.2cm, then it showed 1.9cm, and by the time they got it out they said it was 2.7cm.  I wondered if it grew that fast, but the BS told me she believed the MRI didn't get a good pic.  It is a grade 3 :(.

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

    The way tumor size was explained to me was: When you have a mamogram you are standing up & your breast hangs(and is squished) one way. When you have an MRI, you are laying on your belly with your breast hanging down. When you have an ultrasound, you are lying on your back & your breast spreads differently. I "had" small breasts & my tumors ended up 1.3 & 1.6cm, smaller than any pre-op measurements. Both were believed to be 2-3cm & I was warned they may be found to be larger at the time of post-op biopsy. Or maybe mine shrunk & would have gone away on their own. Wouldn't that of been great.

  • dexxy
    dexxy Member Posts: 229
    edited June 2011

    Hi Ladies,

    I'm back from my appt with the homeopathic Dr, wow! that was informative, I feel like my brain is spinning.  It was the first time someone who  knows more about cancer sat down and really looked at my test results and gave a few options.  All of which included western meds as well as herbs, supplements etc.  If you've ever heard of the cancer sniffing dogs, guess what this the place who developed them, and did the study.  Super interesting, and for you dog lovers "The Dog Whisper" was just there filming.  Michael Broffman is more knowledgeable than any dr I've met.

    I've got my 2nd opinion scheduled for tomorrow at 11am at UCSF.  I know I'm going to come back crying and stomping my feet so thanks for all of you being my support group :)

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

    Dexxy ~ You originally asked "Is there anyone out there that had a similiar diagnosis and did not do chemo".

    My diagnosis is pretty darn similiar! Right down to age 43 at diagnosis.  One difference is that I had a bilateral mastectomy..thus avoiding radiation (I had many personal reasons for that decision).  So after the mastectomy....my systemic treatment choices were chemo and/or tamoxifen.  My MO wanted to wait for the oncotype score to make a final recommendation.

    My oncotype score came back at 15 and my MO said he thought the chemo would do me more harm than benefit against recurrence in my case.  He thought that Tamoxifen would be the best weapon of choice for me since my tumor was HIGHLY estrogen positive.

    That's my story...so far.  Absolutely no regrets.  Could the cancer metastisize and be back some day? Statistically, my chances are very low....but sure it could.  I could also have done chemo and still have it come back.  As you see there are some ladies on here that "threw everything they had at it" but it still came back.  For me... I felt I would sleep best at night NOT doing chemo and avoiding the possible damage it could do to my healthy tissues....but then again... I had the blessing of the MO as well..so that helped.

    Best of luck to you in your decision making process.  Being in the "gray zone" is probably the hardest place you can be. Big hug to you!

  • DebRox
    DebRox Member Posts: 437
    edited June 2011

    Hi dexxy: your post sounds just like me. Never been on meds my entire life etc. Lived a very clean life, eat well, take vitamins, exercise regularly etc.



    My stats were similar to yours going in. After surgery they changed, my path was upgraded to grade 3, but had 3 consults and they range from grade 2-3. My tumor went from 1.9 to 2.4. Discussed this with the bs and she said there is a margin of error for size. Well that pushed me from stage I to II, which scared me.



    Anyways my oncotype dx score was 21 so I have a 14% chance of recurrence. I met with 3 MOs, all three offered chemo. Two indicated my choice due to low-intermediate score, but one of them said I should do it because of age and I could tolerate chemo, still my choice. This range is the most difficult to fall into.



    I knew I had 3 strikes against me going in, age (just turned 46), pre-meno and grade 3 tumor.



    I reluctantly opted for chemo and have finished 2 of TCx4. I'm also doing cold caps to preserve my hair. I have been active throughout chemo and suffered very few SEs, if really any, other than fatigue. Oddly, The pre chemo steroids are giving me more problems than the actual chemo.



    I do subscribe to the food is my medicine idea and while I ate clean and healthy in the past, have made a much more concerted effort to eat so much more variety and nutrient dense foods. I feel this has also helped alleviate SEs. I met with an integrative oncologist at ucla to double check my nutrition and supplements and I was taking and doing all the right things. She tweaked a few supplements, but I feel so empowered by what I'm doing nutritionally.



    Anyways it is a tough decision and wish you all the best in making the best one for you. We all want to live long healthy lives. It sucks being diagnosed at such a young age, in the prime of life.



  • bevin
    bevin Member Posts: 1,902
    edited June 2011

    HI dexxy, Just wanted to chime in here.  I didnt elect to have chemo. I had a 2cm tumor, stage 2a. 5 lymph nodes removed all negative. I saw 3 Oncos' for opinions since I was young at diagnosis (45).  Two said it was up to me, my Onco DX score was 11, one Oncologist said to have it I was young and there are so many surviors now because of chemo and the new Onco score is new. 

    I honestly now regret not accepting the additional treatment.  I did have radiation and am now on an AI, however, I am also being watched for something in my lungs. It could be something and it could be nothing.  Next scan will likely give more information. Its a bit scary and I don't wish this on anyone. I wish I had asked folks like those here like you did before I elected not to have it.  Its different hearing advice from others who have gone before us.

    Good luck with your decision. I just wanted to let you know I was someone like you and now wish I could turn back time.

  • dexxy
    dexxy Member Posts: 229
    edited June 2011

    Hi Ladies I'm back from my UCSF adventure.  My MO was delightful but as we all knew she couldn't give me any more of a direction than anyone else.  basically is up to me.

    Do I want to do chemo and gain 5% less recurrence, or be happy with the 11% and walk away and never look back.  She said the hardest thing is the regret for most woman who decide to not do the chemo.  They continue to beat themselves up and therefore force a demise

    I'll be doing a lot of thinking this weekend, pro and cons - thank you for being understanding, caring, knowledgeable, BEAUTIFUL WOMAN!

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

    Best of luck with your decision, dexxy...and when you decide, I wish you peace with your decision and strength to move forward in your journey!

  • Claire_in_Seattle
    Claire_in_Seattle Member Posts: 4,570
    edited June 2011

    Hi Dexxy,

    I thought it might help if I framed it a bit differently.  5% means that 1 in 20 women will be cured by chemo whereas they otherwise would not have been cured.

    You have no way of knowing if you are this person.

    So while not likely that you will have a recurrence, it's not "extremely unlikely" either.

    Chemo is not fun, but relatively low risk for an otherwise healthy woman.  Quite a different deal for someone with major health issues.

    I had very different stats, but looked upon the chemo experience as a "major hammering to ensure I was OK going forward".

    I am now stronger and fitter than ever.  Good luck whatever you choose. - Claire

  • Claire_in_Seattle
    Claire_in_Seattle Member Posts: 4,570
    edited June 2011

    Why so "half empty" Clyn???

    Agree on Stage IV, that's where NED applies.

    I am moving forward assuming I am cured.  And that my life will be wonderful henceforward.  I have things to do, places in my career to go, new mountains to climb, both literally and figuratively.

    To do anything else would be robbing myself of the precious time I do have on this earth. 

    Please don't tell me that I will forever have cancer.  Because I don't believe it.  I have a "history of breast cancer".  Very, very different.

    I also have a "history of measles".

  • beacon800
    beacon800 Member Posts: 922
    edited June 2011

    Hey Dexxy,  good on you for going to UCSF for 2nd opinion.  As I understand what you were told, chemo would drop to from an 11% chance to a 5% chance.  That is a 50% improvement in your odds.  I think I would do the chemo.  You are young and that is a bad thing for bc but a good thing for enduring chemo.  I do know many who have done chemo on an "optional" basis to best protect themselves.

    UCSF is really a great breast cancer center, one of the very best,  and they do the cold caps if you want that.  I live on the SF Peninsula and was treated at Stanford.  They are great there too.

  • dexxy
    dexxy Member Posts: 229
    edited June 2011

    beacon800-

    its actually 11% down to 6% or another test said 14% down to 9%

    dpends on what test or program you look at

  • dexxy
    dexxy Member Posts: 229
    edited June 2011

    I just want to be the other 89% damn it! :0

  • Bren-2007
    Bren-2007 Member Posts: 6,241
    edited June 2011

    Dexxy .. the only difference in our diagnoses is our age.  I had just turned 51 at the time I was diagnosed.

    I did not do chemo.  I had a lumpectomy and radiation.

    I wish the best in making your decision.

    Hugs,

    Bren

    PS .. A close friend of my was diagnosed at the same time I was ... again, the diagnoses were the same, except she was 48 at the time.  Chemo was recommended because she was under 50.  She turned down the chemo and had surgery and radiation.

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

    You know something, I think there are too many people eager to nitpick these days and taking things the wrong way.  Nobody is being negative when they say there is NO cure, they are simply stating a fact.  Nowhere is it written that there is a cure for cancer and that is because there is NO cure.  And true many women never do have a recurrence and that is wonderful and I wish everyone could be so fortunate as to never have to deal with cancer ever again.  In my opinion I think being cancer free, NED or even in remission (when you are Stage lV as I am) is a wonderful place to be, but saying you are cured is not an accurate description.  

    And I also think that doing chemo or not doing chemo is an individual choice and there is no right or wrong choice.  But please let's not be turning every single thread on this board into another heated difference of opinions.   We are all entitled to our own views and should not take offense to someone voicing theirs just because we don't agree with the terminology. 

    I normally would not even make a comment on something like this, but another sister just died yesterday....one who was only 42 yrs old.....one who had been on the same treatment I am doing now and it failed to keep her alive.  So am I questioning what is going on with me?....you betcha.  I am not questioning my decision to do chemo, I am questioning if it is working or not. 

    I really want you to be in the other 89% also Dexxy.  You have a tough decision to make, but again it is one you have to make for yourself. 

  • CrazyKitties
    CrazyKitties Member Posts: 180
    edited June 2011

    I have been following coolBreeze on her blog, and I am just sick and pissed off for her. Ann, if you read this, we are on facebook together. I think I sent you some advice on skin and hair. I really admire you and I hope you go into remission for a long time.xoxxo

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