CALLING ALL STAGE I SISTERS
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I never thought about it being nerves. I'll go with that. Iwas thinking it's been too long (nearly 7 yrs since the partial mx), but I have had recon surgeries last November and the December before that. Thanks for making me feel more normal.
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HI everyone - I am new to your group, just found you yesterday. I met with my onco yesterday for the first time and my head is swimming. I thought he would tell me flat out you need chemo or you don't but what I got was a bunch of stats, a list of side effects and told to think about it. It seems like from what he said my risk of reoccurance is the same if I do tamoxofin or chemo and that there is no added benefit from doing both. I then called someone I know who is a radiology onco who told me the same thing and said that chemo is not going to have any greater effect on my odds. He seemed to advise not to do it becuase of the short and more importantly long term SE. I am overwhelmed and want to make the right decision. I don't want someone to tell me 2 years from now that I've got a brain tumor because I didn't make the right treatment choice. Any advise or suggestions?
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Hi boatergirl - did they do an oncotype test? That will give you some basis. Depending on your score, it will tell you whether chemo would make any difference, or whether hormone therapy is enough and avoid side effects of chemo. Sometimes an onc will make the call based on your pathology alone and not do the oncotype test. The test is not perfect, but does give you more info so you can have a little piece of mind. Women will good pathology sometimes score high on oncotype and therefore do chemo. On the other hand, I've read posts where women had low oncotype scores, no chemo & recurrence. It is definitely overwhelming! The first onc I saw did not see the need for oncotype test - but the 2nd opinion did. I'd rather have at least some kind of analysis rather than someone's guess. (My results were in the low range and no added benefit from chemo.)
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boatergirl - my first thought was the same as janetinvirginia, what was your oncotype. I had the same anxiety-ridden decision to make. I had a stage 1, grade 2 (intermediate) tumor with ended up with an intermediate oncotype. I got 4 different onc opinions in my desperate hope that I would be able to reach a conclusion or actually, that someone would tell me what the heck to do. The first said you really need to do this, the second said you shouldn't do this, I would not have my wife or family do it under these circumstances, the third was 60/40 for doing and the last was 50/50. Ultimately, you already have found the question that will lead you to the right answer for you - can you handle risk and can you handle whatever comes down the road in two years. The fact is, anything could come down the road in two years but, yup, its just the but. I am doing chemo, CMF, as insurance, however I can say that after round two I began to wonder if the benefit was really enough. Not that CMF is so very bad, but just is it worth it. So that is where I am, is it worth it. I will never really know, none of us will.
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boatergrl - When I met with my onc, he looked at my biopsy path report and based on what he saw he decided I did not need chemo - thank goodnes - my husband went through chemo with the same onc twice. I am just doing 30 rads and will look at hormone therapy when I am finished. With our dx's being the same, I would really take a close look at whether chemo would be of any benefit.
Good luck to you
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I don't think anyone can say for sure that the cancer recurred because they did or didn't do chemo. Many people who've gotten chemo still have the cancer recur, and it's a known fact that chemo benefits a very small percentage of patients who take it. That's why it's nice to have the oncotype test - while no guarantee, at least it's another piece to factor into the decision. Doing chemo carries a whole host of risks aside from just the unpleasant immediate side effects, and the notion of hitting the cancer with all they've got seems a bit overkill if you are in a low risk group when you consider the potential long term harm that chemo can cause. But, it's a very personal decision that needs to be weighed carefully taking all risks into careful consideration. Personally, I can't look at chemo as just insurance - if there's strong evidence that one may clearly gain a benefit then I would never say no, but otherwise you are putting yourself at risk for other issues. Luckily my oncotype score was low enough to have a clear answer, BUT...no one ever knows for sure what's enough so you just have to make a decision that you are comfortable enough to live with.
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boatergirl, I have similar stats to you, and my oncotype test was intermediate. I decided that the side effects of chemo were not worth the small possible benefit. I am not too much of a worrier, so I can deal with the 1-2% greater risk. Cancer treatment is progressing, but there still is a lot they don't know, so we end up having to make decisions in those gray areas. It would be nice to have a black and white choice, but that's not the way it is.
I have my radiation simulation today, I hope. It has been postponed twice--once because I didn't have my oncotype results back yet and the other time because the machine broke. I hope today works out--it is almost an hour drive there, so I hate to waste a whole morning. I also hope the doctor can help me with a rash I developed recently on my treated breast. The surgeon has me on antibiotics, but they don't seem to be doing a lot.
Anyway, this is my first post in this particular group, so Hello, everyone! I would rather not be a member of this exclusive club, but it is nice to have a support group.
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boategirl our diag is similar but I am IDC and grade 1. My oncotype score was a 23 which is in the middle of intermedite. My med onc advised against me doing chemo as well and to do radiation and tamoxifen. He felt that the long term SE would be worse on me than the small margin of benefit it would give me. MY BS and Rad Onc also agreed with this. If you feel really good with your doc's listen to them and read everything you can. I was not sure if I was making the right decision but in the end decided to do what the docs recommended. Now I feel good about my decision and will start rads hopefully next week. I have started excersing more and eating better which I know will help my odds and I already feel better.
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I appreciate this discussion today in particular, as I am really on the fence about continuing. It isn't that I am so very uncomfortable, it is that my whole life revolves around chemo and will for four more months. The gain of 0-3% is feeling less worthwhile when you plan your life around chemo - I had all kinds of statistics, played with cancermath and other similar sites and I think I just felt too scared not to do chemo. Last night I did cancermath again, and obviously in a different frame of mind than 8 weeks ago during the decision process. When I look at the number of days I could potentially gain and subtract the number of days it will take to complete chemo, well, it is just not adding up for me. I definitely plan to talk to the onc about it next week.
One other thing, tumor size definitely plays a role. One centimeter or less generally gets a no-go on chemo, all other factors being the same, but a 1.1+ opens the door for discussions,
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Thanks everyone for you input and advice. You are all kind of confirming what my gut is telling me. They had not done the oncotype test yet - cause they have only had to ability to do it for 2 months - now I have to wait another 2 weeks - arrgh! But if it comes back low, which my friend who is a radiology onco thinks it will it really doesn't sound like the little benefit of chemo is worth the risk. There is so much wisdom and support here with all of you! Thank you all for being so willing to share - it really does help me feel like I am not alone in this!
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boatergirl - a resource i didn't mention would be the oncotype dx website - they will take calls and answer questions - they are very helpful
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Hello susantm0
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To All Our New Sisters.
♥ ♥ ♥
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WOW, so many new sisters. Damn this beast!
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I second that emotion, BarbaraA! Much as I like to meet new people, this is not right!
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Can I third that!!!!
BarbaraA Love your avatar - Looks like you were having fun!
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Hi all,
Michelle, a big hug to you and your strength and awesome attitude. I am so happy for no tx for you. You are in my thoughts through the day on Wednesday.
Oakley, I have you in my thoughts and prayers, too, on Wednesday.
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When I see another sister joining the thread I really want to say.
I wish you weren't here. I wish we never met.
Instead of saying WELCOME.
We had so many newly DX women since yesterday.
All I want to say is We're all in this together no matter what.
HUGS are pouring to every one of you from NY.
♥
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boatergrl - chemo targets fast growing cells so the other factor to look at is the Mitotic score component (how fast the cells are dividing) of your Grade score. This will be a 1,2 or 3. 1 means slow growing and 3 is fast growing. My score was a 1 and my onc said there was a 1% positive benefit but a 3% negative benefit from chemo for me because of possible SEs. I am a worrier and chose a bmx when the surgeon recommended lumpectomy, and my tumour size was 2cm so well over that magic <1cm level. I decided against chemo mainly because of the real possibility of permanent damage to my body when there really was little gain but also because my cancer cells were very strongly hormone driven so HT was going to be as effective as chemo as 'insurance' against recurrance, which may be the case for you too.
Sheila - ditto. It is heart wrenching to see so many new ladies but then I am glad they have found this site and will have support and help from everyone here rather than trying to get through this terrible time alone.
Gotta go to tennis - fantastic day here.
edited because some of the post was missing - there now
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good point, Rae, that's where i won the prize for chemo. which is usually not done on MS pts.. y cancer was not only agressive, but dividing rapidly( which i guess is what aggressive means duh..) i ende up when having surgery from one 1cm tumor, to 2 1 cm tumors and a little baby, less than 1cm as the dr. told me. Im sure he gave the measurement. too but that's what i remembered, of course..
i just know that with my poopy luck, i wanted to hit it hard, so we went for the GOLD!! there are days i say i regret doing it, the se's then where awful, the ones today ARE awful.. then, i think back, and i realize i would make the same decision again... so, its all a wash for me.. thats' for me, we all get to decide for ourselves.. hey, it'll be 1 yr from chemo 2 morrow!! we're going to Gildas' club in Ft. lauderdale, and then, out to dinner... yay and im still here....3jays
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I am lying here, tired but I cannot sleep. Because I had a reaction to the contrast last time, I have to take a Steroid 13 hours prior, 7 hours prior (thats 1am) and 1 hour prior to the MRI, plus benedryl and valium an1 hour prior. I won't know if I am coming or going, up or down...tomorrow is gonna be fun!!!
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Michelle, I am PM'ing you.
{{hug}}
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Welcome, Newbies, you're in the right place.
Praying for all the tests being done this week and those waiting for results!
boatergirl--from what you've posted as your DX, hoping the onc appt goes well. We have very similar DX.
o2bhealthy--so glad you won't have to face more treatment. Compared to what you've already been through the thyroid is almost a no-brainer!
Hi onestep!!!
I love how you all can post the nicest pics!
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Michelle, I have a history of reaction to the contrast ans take the steroid regimen before injections now. I don;t have the reactions anymore. It is a hassle to take the meds, bt well worth not haeing the adverse reaction. Benedryl puts me to sleep, but also help prevent the reaction.
Will be thinking of you today, Michelle.
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Those still concerned about bras: check out the other thread on here
Bras 101: The Great Post-Exchange Debate.
I was told by my PS to wear an underwire. The biggest thing about bras after recon is to make sure they are encapsulated and not able to migrate anywhere until the implant has settled into the pocket. It can take months to do this.
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Praying for you, MIchelle!!!
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I am praying, too. Lots of prayers for you, Michelle.
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Hi Michelle - wishing you the best! I had my thyroid right lobe removed when I was 20 (papillary ca) - no other treatment and no problems since (am in my late 50s now!). Just thyroid replacement medicine all these years. Like any surgery, just takes some recovery time but you will do fine!
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((Michelle))
♥
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