Tough decision

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Bookwrm10
Bookwrm10 Member Posts: 4
edited March 2014 in Breast Cancer #1
I was diagnosed in February 2004 with invasive lobular carcinoma. I've since had a lumpectomy and sentinal node biopsy. The last surgery was 3 weeks ago. The tumor was Stage I, low grade, the margins were clear, and the lymph nodes are negative. The cancer is ER positive. I have seen 2 oncologists regarding treatment and received two different opinions. The first said that I should have radiation followed by tamoxifen. She said she could do chemo on me, but, she didn't feel the benefit (about 3-4% increased survival rate) outweighed the side effects. She also considered me post-menopausal "for her purposes", as I am perimenopausal, but get periods erraticly. The second oncologist said he recommended chemo, and then radiation and tamoxifen. He said the same thing about the added percentage of survival rate, but said that if I didn't take the chemo and it recurred or metastized, I would always wonder if I'd done everything I could to prevent it and possibly kick myself for not doing chemo. He also considered me pre-menopausal. I am very confused. I really am afraid of chemo and its effects, both short term (I handle illness very poorly) and long term. I am especially terrified of being bald, although I've been told this should not be a factor in my reasoning. I was happy with the first opinion, and now I'm terrified of the decision I have to make. I seriously don't know what to do. If I don't take the chemo, am I playing with my life? If that's so, why don't I hear more about women with my stage and cancer circumstances having chemo. I need some information and help. I need to know exactly what chemo is like, so I can decide if I can handle it. I also need to know if I am really playing with my life by not taking it,especially since I have not heard of people with Stage I, lymph node negative, ER positive cancer having chemo. Any input would be helpful. I am supposed to get back to the doctors in a few days with a decision. Thank you.

Comments

  • lynne40
    lynne40 Member Posts: 87
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    Dear Book worm,
    I'm sure everyone will tell you to do your homework, ask both docs for studies that support their opinions too. If need be get a 3rd opinion from a doc not in practice with the other 2. Find the doc you are most comfortable with(listen to your gut feeling!) I know you are scared and just want an answer and to get on with it. Many of us felt that way too, but you are the one who will have to live with your decision. What is right for you maybe not right for someone else. I researched and read until I thought my mind would explode, but in the end it helped me decide and then live with my decisions. I had a tumor that was 1.6 centimeters. Clean margins. I had a centinal node biopsy with no node involvement. I was stage 1 grade 3 tumor, very fast growing It had appeared out of nowhere visible through my skin. I saw 5 different docs. The surgeon I chose just "fit" with me. He listened was younger(43) and also had a PHD in cancer studies. He answered every question, and was respectful of my feelings. He was conscientious about leaving me a very even inconspicuous lumpectomy scar. I was told that because my cancer was hormone - and very fast growing on the chance that the cancer was also growing somewhere not visible, I should do chemo. I was also told to do radiation. In the end I chose chemo but declined radiation because on the chance the cancer did come back the radiated skin could not be used for reconstructio. I am also a type 1 diabetic and I'm very thin. I was told by my cancer surgeon and the plastic surgeon that I would have a hell of a time with a flap procedure, because of healing with the diabetese and the lack of available skin and fat. For me there was alot to consider. I chose not to radiate. My docs even daid maybe"by doing the standard of care, we do more harm then good. It is your decision. You are knowlegable, and motivated by your own needs so we understand" Yes being bald sucks. Allow yourself to feel that way, and realize your feelings will fluctuate throughout this whole process. I am 6 months after chemo. I did well on it, and I too hated being bald, but I looked at it Bald or dead? and for me bald one. We are always here to talk and lean on and pray for each other. Good Luck, make your best decision for YOU and then forge ahead at peace that you are doing the best you can! Hugs,
    Lynne
  • tlmac
    tlmac Member Posts: 272 Member
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    There are no easy decisions where cancer is concerned and, unfortunately, there aren't any guarantees. Some women take all the options and still suffer a reoccurance. Others choose minimal treatments and live full healthy lives. You need to do what you're most comfortable with. For me, the thought of baldness was so upsetting I considered 6 months of CMF instead of AC for 2 in hopes of avoiding it. In the end, I found there wasn't anything I was more afraid of than dying so AC, the more agressive option, was right for me. There are some great wigs out there that can get you through but I agree with Lynne. Don't hesitate to get a 3rd medical opinion to help you sort it out. We'll be praying for you.
  • Bookwrm10
    Bookwrm10 Member Posts: 4
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    lynne40 said:

    Dear Book worm,
    I'm sure everyone will tell you to do your homework, ask both docs for studies that support their opinions too. If need be get a 3rd opinion from a doc not in practice with the other 2. Find the doc you are most comfortable with(listen to your gut feeling!) I know you are scared and just want an answer and to get on with it. Many of us felt that way too, but you are the one who will have to live with your decision. What is right for you maybe not right for someone else. I researched and read until I thought my mind would explode, but in the end it helped me decide and then live with my decisions. I had a tumor that was 1.6 centimeters. Clean margins. I had a centinal node biopsy with no node involvement. I was stage 1 grade 3 tumor, very fast growing It had appeared out of nowhere visible through my skin. I saw 5 different docs. The surgeon I chose just "fit" with me. He listened was younger(43) and also had a PHD in cancer studies. He answered every question, and was respectful of my feelings. He was conscientious about leaving me a very even inconspicuous lumpectomy scar. I was told that because my cancer was hormone - and very fast growing on the chance that the cancer was also growing somewhere not visible, I should do chemo. I was also told to do radiation. In the end I chose chemo but declined radiation because on the chance the cancer did come back the radiated skin could not be used for reconstructio. I am also a type 1 diabetic and I'm very thin. I was told by my cancer surgeon and the plastic surgeon that I would have a hell of a time with a flap procedure, because of healing with the diabetese and the lack of available skin and fat. For me there was alot to consider. I chose not to radiate. My docs even daid maybe"by doing the standard of care, we do more harm then good. It is your decision. You are knowlegable, and motivated by your own needs so we understand" Yes being bald sucks. Allow yourself to feel that way, and realize your feelings will fluctuate throughout this whole process. I am 6 months after chemo. I did well on it, and I too hated being bald, but I looked at it Bald or dead? and for me bald one. We are always here to talk and lean on and pray for each other. Good Luck, make your best decision for YOU and then forge ahead at peace that you are doing the best you can! Hugs,
    Lynne

    Thank you for your advise. Could you tell me what your experience with chemotherapy was?
  • sassysally
    sassysally Member Posts: 150
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    Hi there, well after reading what both doctors have told you I agree with Doctor number 2. Do the radiation, chemo and tamoxifen. My story is a long one, but in short I have had breast cancer three times. The last time I was borderline to do chemo. As I had been there before, I knew what to expect. Still I opted to take the chemo. For one of the very reasons your doctor told you. If i didnt and it came back, I would alway wonder "What if??" You are stronger than you think you are. The side of chemo varies from person to person. What kind of chemo are they talking about. The first time I had chemo, I didnt lose my hair, I didnt get sick, and my periods never stopped. The second and third times felt kind of crappy, lost my hair ( which happened to be in the summer which was terrific as lost all of the hair on my legs as well...NO SHAVING!!) and my son an I got a crew cut for the summer. And no more periods. Would I do chemo again.....Yes I have more lives to think of in this picture then just myself. The unknown is always scarey. Knowledge is power, and this is a great place for it. I hope this helps somewhat. Check out my web page. If I can help any further, send me an email. The address will be on my web page. Hang in there. I know this is all overwhelming.But you will be ok, and you CAN do this. God bless you !!!!!!!!!!!!!
  • jamjar62
    jamjar62 Member Posts: 135
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    Hello! Thought I would give you some of my "thoughts" on chemo. I am 41 years old and my cancer was found on my baseline mammo. I had positive nodes and ductal not lobular cancer. I am also ER positive. Having said all that, I had no choice but to do chemo and radiation. I used to work in an oncology office years ago and I was so afraid that it was going to be horrible. I had my first chemo 2 days after Christmas in 2002. 10 days later my first clump of hair fell out. By 3 days later I had bald patches so I opted to shave my head rather than watch it fall out. At first I was relieved to have it over with but then the reality of having no hair set in and I was so depressed. Like or not, for some of us, our hair is part of what makes us women and I felt very sad and ugly without it. I had a great wig and that helped. Most people never even knew I was wearing a wig, but I knew. The chemo itself was not as bad as I anticipated. I usually got my chemo on Thursdays and started to feel bad on Sunday. I was sick and queasy for about 3 days and mostly ate Cream of Wheat (which I hope never to eat again). I never threw up or got an infection or got mouth sores or any of the other bad things that can happen. I had 4 cycles of AC and then 4 of Taxotere. The AC is the worst because of the nausea and hair loss. I lost my eyelashes, my eyebrows, pubic hair, the whole works from top to bottom. The way I look at it now is kind of how I view childbirth. The misery fades after awhile and you forget how bad it was. You don't want to do it again but you would if you had to. My last chemo was May of 2003. My hair grew back very curly (it was stick straight before) but it takes awhile. I think that was one of the hardest parts for me. I was done with everything yet I still looked like a cancer patient because I had no hair. I quit wearing my wig in September but my hair was still really short. By Christmas, it looked like a hair style and not a chemo cut. I could go into more detail about the actual chemo process if you want but I thought I would start with some general thoughts. I'm not glad I had chemo but if it saves my life or even gives me 10 more years, then it was worth it and I would do it again.

    Blessings,
    Karen
  • Sharon345
    Sharon345 Member Posts: 26
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    My cancer sounds like yours. My surgergy was last year, Feb 2003. You didn't say what size your tumor was. It seems to be a standard that anything over 1.0 centermeters has an option of chemo. Anything under has just radiation if you have a lumpectomy and then 5 yrs of tamoxifen. I must be about your age too. I'm perimenopasal. Mine was 1.2 centermeters. I was also very scaird of the side effects of chemo - not just the baldness. By reading some of the ladies posts on this site you'll see what I'm talking about. I choose to not have the chemo - just the radiation, taxoifen and I also get a Zoladex shot every month for 2 years. The Zoladex prevents my ovaries from producing estrogen (but remember, fat also produces estrogen,this happens more after memopause so the Zolardex doesn't take care of it all) I realize I'm taking a chance because of the size of the tumor. Also,mine was a grade 2, medium growing tumor. I also took this into my decision. If yours was grade 3, fast growing, then you should definently consider chemo. Another thing you should think about is that if the breast cancer comes back later somewhere else, taking chemo then will not cure you like it might if you do it now. I had to weigh all these things and more but still choose to not do chemo because of the grade 2 and it was only a little more than 1.0 centermeters. Just like the other ladies said, you should do all the research you can to come up with your best chose. I worried for a long time but I think I made the best decision for myself.
  • krisrey
    krisrey Member Posts: 194
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    Hi Bookwrm,
    It sure is a tough decision, no doubt about that! You have already gotten lots of great information from all these other women that have posted. I will just give you my thoughts on it as well.
    I have invasive ductal carcinoma with one postive node, 1.6 cm tumor fast growing not picked up by mamogram but self exam. I am ER/PR postive and HER2 positive, I am 42 years old. I was offered chemo and radation. I did question whether chemo was REALLY needed because it seemed to be the standard of care. My doc felt to get all the benefits I really needed the chemo. Like you I was scared out of my mind even thinking about chemo. But, like the other women here, after researching and researching until I thought my mind would also explode I realized that I had no choice but to do the chemo. If this cancer should reoccure I want to know that I did everything I could possibly have done. Also if it reoccured and chemo become an OPTION...I would do it all over again. Like sassy said, I have others to think about..my kids need me and I plan on being around for a long time.
    As far as my experience with chemo..you don't mention what they want to put you on but I had 4 rounds of A/C and 4 rounds of Taxol..every two weeks, it was trip!! After the frist chemo I didn't feel any different for a few days. I even continued on with my running 3-5 miles everyday. During the second treatment I saw my hair falling out, so I shaved my head. That was a relief to get that over and it was not as bad as I thought it would be. Meanwhile I still managed to keep up my running and working out at the gym. I never worn a wig, I wore a bandana or baseball cap. There were a few days that I would feel crudy, little sick, but never threw up. The A/C was definately worse than the Taxol. With the taxol I didn't feel sick as much but it left a gross taste in my mouth, I did also have some aches and pains and sometimes had to crawl upstairs to put my kids to bed. The one thing I will say is that chemo does definately have a cummalitive effect. BY this I mean that it does wear you down. I had to stop my running because my lungs just could not take it. I did still walk everyday and continued to lift at the gym. Thankfully I recovered from the chemo really quickly (physically) with no lasting side effects. My last treatment was 9/24 and my hair started to grow back fast. I was not wearing anything on my head in Decemeber. It is now March and I have had two hair cuts and am going for another one. My hair is great, its curly but somewhat a different color than it use to be.
    Its easy for me to say now that chemo was not that bad, but I know at the time it was hell. But the important thing is that I lived through it and would do it again if I had to (pray to God I don't)!!
    I hope you will find some of this information helpful as well as all the other womens posting. This is a great place to get information and support. Let us know how you make out.
    Kris
  • DiO
    DiO Member Posts: 51
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    I was diagnosed in Dec with stage two lymph node positive CA and am in the middle of chemo--AC followed by T followed by radiation. It is not fun, but necessary for me. I also have a close friend who had lymph node negative cancer 7 years ago and chose to have chemo, but was given a much easier protocol with far fewer side effects--she kept her hair, and worked straight through and is cancer free today. Ask your doctor about which protocol they would use and just what the side effects are likely to be.
  • Bookwrm10
    Bookwrm10 Member Posts: 4
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    Sharon345 said:

    My cancer sounds like yours. My surgergy was last year, Feb 2003. You didn't say what size your tumor was. It seems to be a standard that anything over 1.0 centermeters has an option of chemo. Anything under has just radiation if you have a lumpectomy and then 5 yrs of tamoxifen. I must be about your age too. I'm perimenopasal. Mine was 1.2 centermeters. I was also very scaird of the side effects of chemo - not just the baldness. By reading some of the ladies posts on this site you'll see what I'm talking about. I choose to not have the chemo - just the radiation, taxoifen and I also get a Zoladex shot every month for 2 years. The Zoladex prevents my ovaries from producing estrogen (but remember, fat also produces estrogen,this happens more after memopause so the Zolardex doesn't take care of it all) I realize I'm taking a chance because of the size of the tumor. Also,mine was a grade 2, medium growing tumor. I also took this into my decision. If yours was grade 3, fast growing, then you should definently consider chemo. Another thing you should think about is that if the breast cancer comes back later somewhere else, taking chemo then will not cure you like it might if you do it now. I had to weigh all these things and more but still choose to not do chemo because of the grade 2 and it was only a little more than 1.0 centermeters. Just like the other ladies said, you should do all the research you can to come up with your best chose. I worried for a long time but I think I made the best decision for myself.

    My tumor was 1 centimeter and grade 1. I was told that meant it is slow growing. I don't know if that means any future tumors would return as grade 1. Also, you mentioned that chemo loses effectiveness after the first time. That is something my brother told me, but, I wasn't sure it was true. Using your logic, and considering my tumor is grade 1, maybe I should save the "big guns" for down the road, should I need it. However, that really won't make a difference if it goes to another part of my body, will it? I mean, at that point, isn't the chemo just to give you time, not to save your life. And, if I take the chemo now, maybe I can avoid the metastisis, if there's some little cancer cell now floating in my body looking for a new home.
  • Bookwrm10
    Bookwrm10 Member Posts: 4
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    Hi there, well after reading what both doctors have told you I agree with Doctor number 2. Do the radiation, chemo and tamoxifen. My story is a long one, but in short I have had breast cancer three times. The last time I was borderline to do chemo. As I had been there before, I knew what to expect. Still I opted to take the chemo. For one of the very reasons your doctor told you. If i didnt and it came back, I would alway wonder "What if??" You are stronger than you think you are. The side of chemo varies from person to person. What kind of chemo are they talking about. The first time I had chemo, I didnt lose my hair, I didnt get sick, and my periods never stopped. The second and third times felt kind of crappy, lost my hair ( which happened to be in the summer which was terrific as lost all of the hair on my legs as well...NO SHAVING!!) and my son an I got a crew cut for the summer. And no more periods. Would I do chemo again.....Yes I have more lives to think of in this picture then just myself. The unknown is always scarey. Knowledge is power, and this is a great place for it. I hope this helps somewhat. Check out my web page. If I can help any further, send me an email. The address will be on my web page. Hang in there. I know this is all overwhelming.But you will be ok, and you CAN do this. God bless you !!!!!!!!!!!!!

    The doctor said he would use AC. I asked about CMF and was told it was not as effective.
  • epgnyc
    epgnyc Member Posts: 137
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    Decisions, decisions. Sometimes they seem relatively straight-forward but other times like with yours whether to take chemo or not can be so difficult. I was diagnosed in May of 2002 with a 1.8 mm. tumor, Stage I (no lymph node involvement), Grade 3 (very aggressive), ER/PR negative and HER2/neu negative. I was 55 and post-menopausal at the time. My oncologist at Memorial Sloan-Kettering recommended that I do 6 months of CMF chemo rather than the more aggressive AC regimen. He didn't feel that the more toxic AC was necessary and after doing much research and getting a second opinion, I agreed. I felt very comfortable with my decision and personally am very glad I didn't opt for the AC. I had a really tough time with the CMF as it was - nausea and vomiting, despite all the great meds they have now, low blood counts, etc. My reaction was not typical however. And the good part was that I didn't lose my hair. It thinned but I didn't have to go through the long re-growth process. You've had lots of good advice here, the most important of which was that you need to feel comfortable with whatever decision you make. These decisions are very personal ones and the same one will not be right for every woman. If you are sure about your choice, you'll never be playing the "if only" or "what if" game. Good luck to you, whatever your decision. Ellen
  • Mich1417
    Mich1417 Member Posts: 37 Member
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    Hi! Sounds like we are going through this together! I'm 36, was diagnosed Jan. 30th 2004 with invasive ductal. Had a 5cm tumor, clean edges, grade III, er/pr +, neu/r(whatever)+, 3 lymph nodes involved. I had planned on doing an Ironman triathlon at the end of this year, so I wanted to attack this with everything I had. I had a modified radical mastectomy on the 4th day after my diagnosis! 1 week later I had a hematoma surgery at the incision site. 3 weeks later I started chemo, which was last week. I'm on TAC for 6 cycles once every 3 weeks, 5.5 weeks of radiation after that and Tamoxifan after that. I thought, "give it to me-I'm a tough chick". I felt icky and achey on the night of chemo, and yucky, achey, headache, tiny bit of nausea, on day 3. The anti-nausea drugs these days are awesome! That's been it so far! Each day after that got progressively better. I'm here on day 11 with no mouth sores, no diarrhea, somewhat more tired, but no big whip! I'm still working out, on a scaled down level, but I teach spin and step aerobics. I still am teaching 2 of my classes on the 2 weeks after chemo. I can still do them, but I'm pretty tired(a good tired) after. So far, so good! I'm just thinking positive and taking one day at a time! I'm putting off the Ironman until next year!
  • jeancmici
    jeancmici Member Posts: 665 Member
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    Bookwrm10 said:

    The doctor said he would use AC. I asked about CMF and was told it was not as effective.

    I think you will find many good oncologists who would agree that CMF with no positive nodes would be an effective and sensible choice.

    You have a lot of opinions to sort through here - Good luck with your decision - there is no perfect answer because we cannot know the future with any certainty.

    We were all afraid of chemo but if you take it, you will get thru it just as we all do.

    Warm thoughts, Jean
  • billandpatty
    billandpatty Member Posts: 86
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    We all have to face making decisions about our futures; to have chemo, radiation, lumpectomy, mastectomy, tamoxifen, etc. There are very personal reasons that we each pick our own paths to recovery. I know when I first heard the doctor recommend "chemo", I was so sad and felt so alone. The first thought I had of chemo was losing my hair -- I didn't think I could cope. I really didn't know how I was going to have time to deal with this cancer stuff in my life, I had too many other things to do! When it came to deciding, I went for it. I decided that if I was going to beat this cancer, I was going to give it all I had. So I did 4 treatments of A/C and 7 weeks of radiation. And the baldness? It really wasn't so bad -- in fact, losing the hair on my head didn't bother me as much as losing my eyebrows and eyelashes. Thank goodness eyebrows and eyelashes grow back first and fast. One of the pluses that was mentioned before was NO SHAVING! And menopause? That hasn't been so bad either. I think what's hard is that all these changes in your body are coming all at once and you're trying to cope with everything. Would I do chemo again? Yes, if that's what would give me a chance to see grandchildren and spend time with those that I love. Is it a piece of cake? Well, no, not from my experience, but you can do it -- you don't know what you can accomplish 'til you're pushed to your limits. Be good to yourself. And remember, smell the flowers along the way.
  • AuthorUnknown
    AuthorUnknown Member Posts: 1,537 Member
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    I found a product that I think everyone should take, and I take it too. It's called THE GREATEST VITAMIN IN THE WORLD. I have a website that you can go to to find out some very interesting stuff about cancer, heart disease, diabetes, arthritis, indigestion, weight loss, and why it is proven to be the best in the world. It is made from whole foods, and is the most complete, highest grade, and most absorbable vitamins, minerals(amino acid chelated), enzymes, and probiotics known on the planet ALL IN ONE CHEAP BOTTLE!! It has everything you need to nutritionally support your entire body and it's all for $40 bucks. Some of the ingredients cost more than that for a single ingredient, not to mention that most of what you buy in the store can actually cause cancer, heart disease, and more. Just read the label, if it doesn't say words like carrots, wild yams, and other vegetable words that you know, then they are synthetic and they could be hurting you, and eveen if they're not they not doing you much good either. Please for you and everyone you know, share this website- it's www.dontforgettotakeyourvitamins.com/wiley15427
  • inkblot
    inkblot Member Posts: 698 Member
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    Hi Bookwrm:

    Echoing some of the advice you've already received here, my thoughts are very similar with
    just a few additional points to consider. These decisions are always very difficult and no on can really tell you what to do. Only try to help you find your own best answer.

    It seems (according to the research) that most of us who are Her2/neu positive, with higher grade tumors, stand to potentially benefit most from the A/C chemo regimens. Research demonstrates that Adriamycin particularly targets the Her/2neu. Radiation is the gold standard, as you know, following most lumpectomies. Again, it depends upon your tumor pathology and your doctor's recommendations and reasons for those recommendations.

    Recurrence and/or mets can and do happen, even following chemotherapy. It is unfortunate but there is absolutely no way to determine whether any cancer cells remain in our bodies, following surgery or any other adjuvant treatments. Any remaining cells may go dormant and then become active again years later or never. They can be growing, even during chemo, but not detectable and therefore, due to the time it takes for the cells to become a solid mass, it may be discovered years later, when symptoms present. There is no sure way to know any of this and no sure way to know that chemo, etc. has eradicated cancer completely. It's a gamble every time. That's the nature of the treatments and the best it can offer. No guarantees, ever.

    I'd say that you're fortunate in that your cancer is a slow growing one. That's always a good prognostic indictor. Still, what to do?

    I'd suggest that you do some indepth research.
    www.nci.nih.gov and www.cancer.org , etc. and look at what the standard treatments are for the different pathologies and see where you seem to fit into those scenarios. Also, I'd get at least one additional pathologocial opinion, wherein the pathologist reviews your actual slides. As you research, make notes and print things out for reference when talking with your doctor's. Ask your doctor's to justify their thoughts/recommendation to you. You need to know what they're basing their suggestions on and why.

    In the end only you can decide. Chemo and radiation can have short term side effects in addition to long term side effects and you'll want to become familiar with these possibilities and then carefully consider them and try to balance them against the potential benefits. Chemo drugs are very serious things to have in our bodies. Period. This is why the thought of having chemo scares everyone so. I've yet to meet any woman with bc, whose doctor's bothered with detailed info regarding side effects, so it's absolutely essential that we educate ourselves. Still, if we feel it's our only/best chance to attempt to eradicate our cancer, then we are truly between the proverbial rock and hard spot. It's a taxing and scary decision to have to make. It's one we each must reconcile for ourselves and if we decide to have the chemo, then, at least we go into it well informed.
    It's the best we can do.

    I wish you well during this tense time and know that you'll ultimately get a feeling for what is going to be best for you. Once you make your decision, be confident in your reasons for it and don't look back, or second guess yourself. We ALL take a chance, with or without chemo, so there should be no guilt or self blame no matter what we choose. We base our decisions upon how we feel, together with what we know/learn and that's all any of us can possibly hope to do.

    Do keep us posted and best wishes.

    Love, light and laughter,
    Ink
  • calabogie
    calabogie Member Posts: 3
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    Hi There
    I am about to have my last chemo on Friday, 19th of March. In November I had 6 mild doses of chemo and 25 sessions of radiation. No real side effects from the chemo other than very tired for a few days. The radiation burned me a bit and that was painful to handle it also prevented me from swallowing without pain. When that was all over I had some scans done and they showed that the lymph nodes (2) that were cancerous were gone. It also showed that the tumor in my upper lobe of my lung shrunk to a little more than half its size. I had surgery at the Mayo Clinic on Feb 4, 2004. They said they got everything but wanted me to go back home and have 2 more mega doses of chemo just in case there were any radical cells floating around my body. Well, this chemo kinda knocked me off my pegs. I started with the procrit shots weekly so I wouldn't be so tired. Approximately 2 weeks after my first mega dose of chemo I started noticing my hair falling out. Today I took another shower and the bottom of the tub was full of hair. I can put my hands in my hair and pull out hands full. I sit and cry. My poor husband doesn't know what to do. He just keeps telling me it will be alright. Even my hair dresser said that she had a number of cancer patients whose hair grew back fuller and curly. I know the people around you want to help, and help the do, but they just don't know the feelings we experience. I'm fine one minute and the next I start to cry. I can't help it. I'm at the end of my treatments which is a blessing. I've never prayed so much in my life, but it helped. I've come through this mess appreciating everything and finally realizing the meaning of "Don't sweat the small stuff". Getting the chemo treatments really isn't that bad. They now have all sorts of medication they give you before you get the chemo to help you through it all so the effects won't be as bad. I know that after my next chemo on the 19th of March my hair will all but disappear and I have a big problem with that. But you know what, I got through the worst part of this cancer, I know that I can get over the hair loss as well. I came on line because I was really feeling sorry for myself and needed to express how I felt to someone who was experiencing the same thing. I hope this helped in some small way. Its not easy. but with God's help I can get through this and so will you. Take Care
  • krisrey
    krisrey Member Posts: 194
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    calabogie said:

    Hi There
    I am about to have my last chemo on Friday, 19th of March. In November I had 6 mild doses of chemo and 25 sessions of radiation. No real side effects from the chemo other than very tired for a few days. The radiation burned me a bit and that was painful to handle it also prevented me from swallowing without pain. When that was all over I had some scans done and they showed that the lymph nodes (2) that were cancerous were gone. It also showed that the tumor in my upper lobe of my lung shrunk to a little more than half its size. I had surgery at the Mayo Clinic on Feb 4, 2004. They said they got everything but wanted me to go back home and have 2 more mega doses of chemo just in case there were any radical cells floating around my body. Well, this chemo kinda knocked me off my pegs. I started with the procrit shots weekly so I wouldn't be so tired. Approximately 2 weeks after my first mega dose of chemo I started noticing my hair falling out. Today I took another shower and the bottom of the tub was full of hair. I can put my hands in my hair and pull out hands full. I sit and cry. My poor husband doesn't know what to do. He just keeps telling me it will be alright. Even my hair dresser said that she had a number of cancer patients whose hair grew back fuller and curly. I know the people around you want to help, and help the do, but they just don't know the feelings we experience. I'm fine one minute and the next I start to cry. I can't help it. I'm at the end of my treatments which is a blessing. I've never prayed so much in my life, but it helped. I've come through this mess appreciating everything and finally realizing the meaning of "Don't sweat the small stuff". Getting the chemo treatments really isn't that bad. They now have all sorts of medication they give you before you get the chemo to help you through it all so the effects won't be as bad. I know that after my next chemo on the 19th of March my hair will all but disappear and I have a big problem with that. But you know what, I got through the worst part of this cancer, I know that I can get over the hair loss as well. I came on line because I was really feeling sorry for myself and needed to express how I felt to someone who was experiencing the same thing. I hope this helped in some small way. Its not easy. but with God's help I can get through this and so will you. Take Care

    calabogie,
    I understand the feeling of people wanting to help but they do not really understand. But I am here to assure you that your hair will be back! The bright side of things is that you are on your last chemo and your hair is only now falling out. My hair fell out really fast so I shaved it all off, that was in June and I did not finish my 8 rounds of chemo until the end of september. I got so use to walking around bald or with a hat, but everytime I saw myself in the mirror I got a shock! Anyway, when I say your hair will grow back fast, it really will. It really is the hardest part of chemo..the hair thing. I havent worn a hat since the end of November or the beginning of December, yes it was really short but i didn't care. People that would see me only once or twice a week could not believe how fast it grows. I have had two haircuts and am overdue for a 3rd now. Well ok..more like a trim and shape up..LOL It came in thick and curly, slightly a darker color. Stay positive and strong, you will get through this.