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Jul 1, 2007 12:28 PM shrink wrote:
I have ER+ (95%), PR- and Her-. The doctor seemed to this this was hopefull.We are 133,172 members in 73 forums discussing 105,240 topics.
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Er+ (100%); PR -; and Her -. From the little bit of info I've found, this is only found in about 10% of all bc.
She is 29 years old and was nursing when found 2.3 cm lump; 1/6 nodes positive. Finished 4 x T/C and 35 rads. Getting ready to start tamoxifen.
I am trying to find out if this puts her in a higher risk for recurrance.
I appreciate anyone else's experience with this.
Kim Log in to post a reply
All Topics → Forum: Hormonal Therapy - Before, During and After → Topic: Anyone Only ER + Worried....
Topic: Anyone Only ER + Worried....
Forum: Hormonal Therapy - Before, During and After — Risks and benefits, side effects, and costs of anti-estrogen medications.
Posted on: Jul 1, 2007 11:31 AM
KSB2006 wrote:
I have never posted before and need to relieve some of my worries about my daughter's path report. Seems she isEr+ (100%); PR -; and Her -. From the little bit of info I've found, this is only found in about 10% of all bc.
She is 29 years old and was nursing when found 2.3 cm lump; 1/6 nodes positive. Finished 4 x T/C and 35 rads. Getting ready to start tamoxifen.
I am trying to find out if this puts her in a higher risk for recurrance.
I appreciate anyone else's experience with this.
Kim Log in to post a reply
Posts 1 - 25 (25 total)
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Jul 1, 2007 12:39 PM KSB2006 wrote:
Shrink, thanks for the reply. I hope your dr. is correct, actually we should always have hope.
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I was dx in 2003 with ER+ invasive and DCIS. PR nor HER2 tests done then. I went privately last year to ascertain HER2 status, thankfully negative My Onc said PR+ and HER2- is the best prognosis. Hope your daughter does well - so sad, when she is very young.
Jul 1, 2007 01:57 PM dizzybuff38 wrote:
Hi Kim,I was dx in 2003 with ER+ invasive and DCIS. PR nor HER2 tests done then. I went privately last year to ascertain HER2 status, thankfully negative My Onc said PR+ and HER2- is the best prognosis. Hope your daughter does well - so sad, when she is very young.
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Jul 1, 2007 02:52 PM sunshinegirl wrote:
I am ER+(50%), PR-, Her- and I asked my doctor if it makes any difference, He said no, it happens sometimes, but he was not concern. I heard Arimidex (hormone treatment) works well with ER+ PR-.
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Jul 1, 2007 05:51 PM L8895 wrote:
I think arimidex is only for post-menopausal women. Tamoxifen is for pre-menopausal women. So sad - 29 and nursing her baby. I pray the outcome is good for her.
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Jul 2, 2007 04:41 AM ake wrote:
i'm 30 and was diagnosed at 28....er+,pr-, her-. my onc. didn't even mention being concerned about that. both my onc. and radiation onc. feel that er+ is a good thing...regardless of the pr status. and i've been on tamoxifen for a year and a half and feeling great.
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Jul 2, 2007 06:14 AM joanne_elizabeth wrote:
ER + is good in that it responds to hormone therapy. ER- does not. The down side is ER+ responds to chemo much less than ER-
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newday, I think that it's tamoxifen/with or without OS in premen; hormone + woman.
L8895, thanks for responding and prayers. Glad to see her2nu -! I pray you stay well.
Having ER+;PR- or ER-;PR+ isn't as common, but having the overexpression of Her2nu gene seems to indicate a poorer prognosis and is usually in post menopausal woman.
Ake, so glad you are doing well! It just seems so unfair that such young woman are getting this disease! Did you do the CYP2D6 genotype test? I have been reading a post about this on the discussions board and had already been looking into in. Suppose to tell how well you can actually metabolize Tamoxifen.
joanne, from what I've read that is the thinking, but the PR- is an indicator of some sort of cross-talk that can also indicate a more aggressive gene at work. That's why my concern about the test to be sure she can metabolize the tamoxifen.
Thank you for replying to my post.
Kim
Jul 2, 2007 08:45 AM KSB2006 wrote:
Thanks, liz. I appreciate the kind thoughts. I am not sure if er-; pr+; is necessarily better. I am still trying to dissect the info. I wish I understood some of the studies that I've come across, may as well be in greek!newday, I think that it's tamoxifen/with or without OS in premen; hormone + woman.
L8895, thanks for responding and prayers. Glad to see her2nu -! I pray you stay well.
Having ER+;PR- or ER-;PR+ isn't as common, but having the overexpression of Her2nu gene seems to indicate a poorer prognosis and is usually in post menopausal woman.
Ake, so glad you are doing well! It just seems so unfair that such young woman are getting this disease! Did you do the CYP2D6 genotype test? I have been reading a post about this on the discussions board and had already been looking into in. Suppose to tell how well you can actually metabolize Tamoxifen.
joanne, from what I've read that is the thinking, but the PR- is an indicator of some sort of cross-talk that can also indicate a more aggressive gene at work. That's why my concern about the test to be sure she can metabolize the tamoxifen.
Thank you for replying to my post.
Kim
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er+ is a good thing. i think er-pr+ is a bit more uncommon. but if you can take tamoxifen, who cares
Jul 2, 2007 03:10 PM ake wrote:
my onc. doesn't feel that the studies are enough yet to determine if the CYP2D6 test is reliable enough. my period is beyong weird...off and on and I have hot flashes, so something is working er+ is a good thing. i think er-pr+ is a bit more uncommon. but if you can take tamoxifen, who cares
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er+ pr- her-.
Read about hormonal and this type from this site.
tamox not always best option for this combo.
I had ovaries removed after masts, chemo and rads and take an aromatase inhibitor.
29 is young for oopherectomy and she is earlier stage than mine... I was stage2/3 (depending on which chart)
all the best.
Michelle
Jul 2, 2007 04:13 PM Carmelle wrote:
i was 38 and had discovered lump when I was 36/37 and nursing.er+ pr- her-.
Read about hormonal and this type from this site.
tamox not always best option for this combo.
I had ovaries removed after masts, chemo and rads and take an aromatase inhibitor.
29 is young for oopherectomy and she is earlier stage than mine... I was stage2/3 (depending on which chart)
all the best.
Michelle
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Yes, the ER-; PR+ is even more rare, I believe the breastcancer.org says around 5% where as the ER+; PR- is around 10%.
Michelle, I've also read somewhere that having just the ER+ may indicate you really need to do Ovarian Surpression along with Tamoxifen for younger women like my daughter. Although her oncologist thinks this is to drastic for a 29 year old to basically put her in menopause.
I believe the Soft trials and another one, can't remember is looking at this and will be coming out with their results in the next year or two. I wish they would give some indication as to what they are seeing. Stay well and thank you for your input.
Kim
Jul 3, 2007 05:50 AM KSB2006 wrote:
ake, I've also heard that it's a very good sign to have the hot flashes. John's Hopkins website says that they (hot flashes)may diminish after continued use of Tamoxifen, which is okay.Yes, the ER-; PR+ is even more rare, I believe the breastcancer.org says around 5% where as the ER+; PR- is around 10%.
Michelle, I've also read somewhere that having just the ER+ may indicate you really need to do Ovarian Surpression along with Tamoxifen for younger women like my daughter. Although her oncologist thinks this is to drastic for a 29 year old to basically put her in menopause.
I believe the Soft trials and another one, can't remember is looking at this and will be coming out with their results in the next year or two. I wish they would give some indication as to what they are seeing. Stay well and thank you for your input.
Kim
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He is doing a number of tests now; one being bloods to see how much Vit D ; one that actually tells about estrogen metabolism; and a few others he is working on.
He also suggested Vit C in IV form.
He feels that a diet change is really crucial in ER+ woman and gave some recommendations of that as well.
Interesting visit.
Kim
Jul 3, 2007 05:55 AM KSB2006 wrote:
Well we met with a Intragrated Medicine Dr. yesterday who looked over her case and gave a number of suggestions.He is doing a number of tests now; one being bloods to see how much Vit D ; one that actually tells about estrogen metabolism; and a few others he is working on.
He also suggested Vit C in IV form.
He feels that a diet change is really crucial in ER+ woman and gave some recommendations of that as well.
Interesting visit.
Kim
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I had my ovaries removed and take arimidex now for four years.
Michelle
Jul 3, 2007 07:22 AM Carmelle wrote:
Kim,I had my ovaries removed and take arimidex now for four years.
Michelle
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Jul 3, 2007 02:32 PM LizM wrote:
Hi Kim, would you mind sharing some of the diet recommendations for ER ++ bc. I am a firm believer in diet and exercise after treatment. I have read a lot of books on the topic but they are always coming up with new foods/supplements that are good for ER postiive bc. Also, as far as the ER pos/PR neg issue. There is some good information on this site about it. Just type in hormone therapy on the search buttom. There is some thought that being both ER/PR ++ may be better as it means a possible better reponse to hormone treatment; however, I'm not sure if any of that has been proven in studies. There is also some thought that ER ++ and PR neg may be more aggressive and may respond better to Arimidex than to Tamoxifen but again I am not sure if any of that has been proven in studies. However, being ER positive is a good prognostic factor.
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Take Care,
Kim
PS see you're in MD too. Dr we saw is in Annapolis.
Jul 4, 2007 09:14 AM KSB2006 wrote:
Hi Liz! I typed a long reply to you last night and by the time I posted it, it must have timed out! All of my post was lost! I will try to sit down again in a day or so - stepping out. Didn't want you to think I wasn't going to answer your question.Take Care,
Kim
PS see you're in MD too. Dr we saw is in Annapolis.
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I was diagnosed at age 30 in 2003 with IDC, 8mm IDC, ER+100%/PR-, HER2-, Grade 1..so I was stage 1. I did chemo (CMFx8) and then tamoxifen + lupron shots monthly to suppress my ovaries. I recently found out that after 4.5 years, the cancer has returned to my rib.
I was unsure whether to respond because I by no means want to scare you or make you or your daughter think that she isn't going to beat this. The odds of my cancer returning were very very slim. I have done a pretty good amount of research and obviously have the experience of all the drugs she may be facing so I thought you might benefit from that. (I'm feeling a bit like the boogeyman lately...not jumping into posts because of my bone mets).
Anyway, a few things to consider. There is some early evidence that ER+/PR- might not have as good of result with tamoxifen as an aromatase inhibitor (Femara or Arimidex). From most accounts, the AIs are superior drugs though late stage trials have not completed yet so tamoxifen remains the standard for us young ones...and it will probably stay that way because there aren't enough of us youngsters to do a separate study on. I would get a couple of opinions about the tamoxifen vs. AI. If tamoxifen is the way you go, talk about switching a couple of years in which is also a common occurrence nowadays.
Also, I just want to make sure you are clear that doing the monthly or tri-monthly ovarian suppression will not cause permanent menopause. It is just temporary and does not harm the ovaries at all. Some oncologists acutally use the shots to protect the ovaries during chemo. I was planning on having kids after the shots and was told i would get my period one cycle later.
Being ER+ is a positive whether the PR+ is there or not so that is good news. Just make sure you delve deeper into the doctors reasoning and get multiple opinions (i got four!). Unfortunately there is little to no research to those under 40. There is another website called youngsurvival.org with message boards and other info specifically for young women affected by breast cancer. If you go to the general msg. board there are alot of women who have opinons about tamoxifen vs. AIs + ovarian suppression.
Sorry for the long post. It's great your daughter has you. I lost my mom to bc when I was 23 and wish I had her to do this research and take care of me (even though I'm a very grown up 35:-). You're lucky to have each other :-)
Tess
Jul 4, 2007 12:52 PM JerseyGemini wrote:
Hi KimI was diagnosed at age 30 in 2003 with IDC, 8mm IDC, ER+100%/PR-, HER2-, Grade 1..so I was stage 1. I did chemo (CMFx8) and then tamoxifen + lupron shots monthly to suppress my ovaries. I recently found out that after 4.5 years, the cancer has returned to my rib.
I was unsure whether to respond because I by no means want to scare you or make you or your daughter think that she isn't going to beat this. The odds of my cancer returning were very very slim. I have done a pretty good amount of research and obviously have the experience of all the drugs she may be facing so I thought you might benefit from that. (I'm feeling a bit like the boogeyman lately...not jumping into posts because of my bone mets).
Anyway, a few things to consider. There is some early evidence that ER+/PR- might not have as good of result with tamoxifen as an aromatase inhibitor (Femara or Arimidex). From most accounts, the AIs are superior drugs though late stage trials have not completed yet so tamoxifen remains the standard for us young ones...and it will probably stay that way because there aren't enough of us youngsters to do a separate study on. I would get a couple of opinions about the tamoxifen vs. AI. If tamoxifen is the way you go, talk about switching a couple of years in which is also a common occurrence nowadays.
Also, I just want to make sure you are clear that doing the monthly or tri-monthly ovarian suppression will not cause permanent menopause. It is just temporary and does not harm the ovaries at all. Some oncologists acutally use the shots to protect the ovaries during chemo. I was planning on having kids after the shots and was told i would get my period one cycle later.
Being ER+ is a positive whether the PR+ is there or not so that is good news. Just make sure you delve deeper into the doctors reasoning and get multiple opinions (i got four!). Unfortunately there is little to no research to those under 40. There is another website called youngsurvival.org with message boards and other info specifically for young women affected by breast cancer. If you go to the general msg. board there are alot of women who have opinons about tamoxifen vs. AIs + ovarian suppression.
Sorry for the long post. It's great your daughter has you. I lost my mom to bc when I was 23 and wish I had her to do this research and take care of me (even though I'm a very grown up 35:-). You're lucky to have each other :-)
Tess
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Jul 5, 2007 05:23 AM ake wrote:
tess....can i ask you how you found out the cancer was in your rib?
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I was on tamoxifen and monthly lupron when I recurred. I was cleaning out my mom's old room, and throwing big bags of books, etc. into a 6 ft. high dumpster (i'm 5 feet tall). Three days later my ribs were killing me on the right (bc) side. Went to chiropractor for all of february and march thinking it was torn cartilage (had x-ray from both chiro and onc. which showed nothing). Everyone kept saying it takes really long for ribs to heal. So 8-9 weeks later my ribs weren't really hurting anymore. I had a regular surgeon appt. and mentioned i had hurt my ribs and he sent me for a bone scan saying it was probably nothing but ribs heal funny..maybe I would need a nerve block or something..
Bone scan showed one spot, CT showed same spot...did tumor markers and PET scan and tumor markers were super super low but PET scan showed same spot. I then had bone biopsy which confirmed it was bc mets...one spot. By the time all the tests started I had zero pain so I don't know if the injury caused dormant cells to perk up or the cancer made the injury more inflamed than it would have...there seems to have to be a connection to the injury, i just can't figure it out.
I've now had oopherectomy, switched to Femara, and on Zometa monthly. My tumor was ER+100%/PR- but now is ER+ 82%/PR+92%...go figure. Anyway, tamoxifen seemed to have turned on me, they say sometimes the tumor figures out tamoxifen and actually uses it to grow...both the Sloan onc. and my onc said that. In hindsight I probably would've switched after 3 years to an AI. It stinks there is no research for young women...our hormones are much different even with ovarian suppression.
Tess
Jul 5, 2007 09:29 AM JerseyGemini wrote:
Hi Ake --I was on tamoxifen and monthly lupron when I recurred. I was cleaning out my mom's old room, and throwing big bags of books, etc. into a 6 ft. high dumpster (i'm 5 feet tall). Three days later my ribs were killing me on the right (bc) side. Went to chiropractor for all of february and march thinking it was torn cartilage (had x-ray from both chiro and onc. which showed nothing). Everyone kept saying it takes really long for ribs to heal. So 8-9 weeks later my ribs weren't really hurting anymore. I had a regular surgeon appt. and mentioned i had hurt my ribs and he sent me for a bone scan saying it was probably nothing but ribs heal funny..maybe I would need a nerve block or something..
Bone scan showed one spot, CT showed same spot...did tumor markers and PET scan and tumor markers were super super low but PET scan showed same spot. I then had bone biopsy which confirmed it was bc mets...one spot. By the time all the tests started I had zero pain so I don't know if the injury caused dormant cells to perk up or the cancer made the injury more inflamed than it would have...there seems to have to be a connection to the injury, i just can't figure it out.
I've now had oopherectomy, switched to Femara, and on Zometa monthly. My tumor was ER+100%/PR- but now is ER+ 82%/PR+92%...go figure. Anyway, tamoxifen seemed to have turned on me, they say sometimes the tumor figures out tamoxifen and actually uses it to grow...both the Sloan onc. and my onc said that. In hindsight I probably would've switched after 3 years to an AI. It stinks there is no research for young women...our hormones are much different even with ovarian suppression.
Tess
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Kim
Jul 6, 2007 05:22 PM KSB2006 wrote:
Michelle, I am glad that is working for you. I know we will be revisiting this decision, but for now I just hate it!Kim
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Appreciate the inpute about ER+;PR-. Evidencewatch has a number of studies listed that also support the use of AI vs. Tam. in the subset of women.
To help us make this decision he's ordered the CYD26 test; thinking is if she comes back as a poor metabolizer we would then have to rethink this. He also ordered a Vit D; something on the fatty deposits (maybe on the liver?); A test to determine her PCB exposures. He said there is indication that there is a link between this pesticide and the ER+ BC cases.
1. Premium water filter (not Brita which she has).
2. NO SOY!
3. NO DAIRY
Wants her on pretty much vegan diet. Can occassionally have meat/fish only organic.
Wants her to add Chlorella; DIM .
Possibly Vit C IV
She takes:
Mataki Mushrooms (New Chapter)
Selenium
Cinnamon
Ginger
Flax seeds (ground daily)
Indole 3-Carbinol with flax legans
Enzymatic Therapy Protective Breast Support (has some of the DIM and Carbinols)
*We purchase all our suppliments on iherb.com as we've found them to be the cheapest.
**Dr. recommended she read, 'The China Study' avail on Amazon.
Also, we found the 'Dietitian's Cancer Story' avail on Amazon.
Sorry this is so long, but hope it has something new to offer you.
Take care,
Kim
Jul 6, 2007 05:38 PM KSB2006 wrote:
Liz, I hope this isn't to long since you probably know most of what I am going to say.Appreciate the inpute about ER+;PR-. Evidencewatch has a number of studies listed that also support the use of AI vs. Tam. in the subset of women.
To help us make this decision he's ordered the CYD26 test; thinking is if she comes back as a poor metabolizer we would then have to rethink this. He also ordered a Vit D; something on the fatty deposits (maybe on the liver?); A test to determine her PCB exposures. He said there is indication that there is a link between this pesticide and the ER+ BC cases.
1. Premium water filter (not Brita which she has).
2. NO SOY!
3. NO DAIRY
Wants her on pretty much vegan diet. Can occassionally have meat/fish only organic.
Wants her to add Chlorella; DIM .
Possibly Vit C IV
She takes:
Mataki Mushrooms (New Chapter)
Selenium
Cinnamon
Ginger
Flax seeds (ground daily)
Indole 3-Carbinol with flax legans
Enzymatic Therapy Protective Breast Support (has some of the DIM and Carbinols)
*We purchase all our suppliments on iherb.com as we've found them to be the cheapest.
**Dr. recommended she read, 'The China Study' avail on Amazon.
Also, we found the 'Dietitian's Cancer Story' avail on Amazon.
Sorry this is so long, but hope it has something new to offer you.
Take care,
Kim
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Jul 16, 2007 12:09 PM JerseyGemini wrote:
Hi Kim -- I didn't get anything :-( Maybe it didn't go through?
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I don't get on here as often as I'd like with a 2 year old grandson who comes here often. Okay, I love it, though exhausted.
I have questions - maybe to many, so only answer what you feel you'd like to share with me.
I am sorry you have had mets to a rib. Sounds like it is small and hopefully they can totally control or starve it off. Will you do chemo this time around? Maybe that's not standard, I am not sure.
It's so weird how they can change what fuels them. Maybe the PR+ will respond better to the hormonal treatment? I assume you are still Her2 negative?
Were you doing any CAM after your initial diagnosis? If so, can you share what? Have you added anything new as far as a CAM this time around?
Did you have vascular invasion in 2003?
Were you offered the OcotypeDX test? Have you had the BRAC testing?
You said you got four opinions!! Wow. Any differing opinions? We got three. The final from Dana Farber and is pretty much what she decided on, although not much different than the two others. They said she could choose the T/C instead of ACT/ or A/C + T. She did go with T/C and lots of rads. They also recommended the SOFT or TEXT trials which so far she has not wanted to do.
I am really sorry to hear about your mom. My husbands only sister was 33 (in 1989 @dx) and fought for 5 very hard years. So, my daughter is ready to do the BRAC tests. It was a hard decision for her, but I think that every piece of the puzzle can help to make the best decisions possible with such an unpredictable monster! I want to stack the cards against it!
Okay, I've gone on and on.
My thoughts have gone to you many times over the last week since reading your experience.
Hugs,
Kim
Jul 18, 2007 12:22 PM KSB2006 wrote:
Hi Tess, Sorry you didn't get the pm - I decided to just post and not try again I don't get on here as often as I'd like with a 2 year old grandson who comes here often. Okay, I love it, though exhausted.I have questions - maybe to many, so only answer what you feel you'd like to share with me.
I am sorry you have had mets to a rib. Sounds like it is small and hopefully they can totally control or starve it off. Will you do chemo this time around? Maybe that's not standard, I am not sure.
It's so weird how they can change what fuels them. Maybe the PR+ will respond better to the hormonal treatment? I assume you are still Her2 negative?
Were you doing any CAM after your initial diagnosis? If so, can you share what? Have you added anything new as far as a CAM this time around?
Did you have vascular invasion in 2003?
Were you offered the OcotypeDX test? Have you had the BRAC testing?
You said you got four opinions!! Wow. Any differing opinions? We got three. The final from Dana Farber and is pretty much what she decided on, although not much different than the two others. They said she could choose the T/C instead of ACT/ or A/C + T. She did go with T/C and lots of rads. They also recommended the SOFT or TEXT trials which so far she has not wanted to do.
I am really sorry to hear about your mom. My husbands only sister was 33 (in 1989 @dx) and fought for 5 very hard years. So, my daughter is ready to do the BRAC tests. It was a hard decision for her, but I think that every piece of the puzzle can help to make the best decisions possible with such an unpredictable monster! I want to stack the cards against it!
Okay, I've gone on and on.
My thoughts have gone to you many times over the last week since reading your experience.
Hugs,
Kim
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Cchemo this time around? - No chemo at this point...all opinions said no, save the chemo for when/if it gets more serious. I'm not super at ease with that.
Maybe the PR+ will respond better to the hormonal treatment? I assume you are still Her2 negative? -- I hope the PR+ will help..I don't know if I am still HER2- b/c they couldn't test my biopsy sample. if another lesion that is easy to get to comes, I'll have another biopsy but they don't think this early into mets it would change.
CAM question -- I did acupunture all through chemo first time around and loved it...had tons of energy and little nausea all through chemo. Since then unfortunately no CAM. I just thought I was actively fighting with the tamox+lupron. I am going to a renowned CAM oncologist on 7/31 and expec a long list of supplements from him. I do take melatonin, Vit. D3 and C. I switched to organic dairy, fruits/veggies and drastically cut refined sugars/flours and artifical sweetners. I never ate much meat but now eat even less. Am going back to acupunture also.
Did you have vascular invasion in 2003? -- Yes, slight vascular invasion was detected...that's another reason I chose to be treated as if my nodes were positive.
Were you offered the OcotypeDX test? wasn't used back then...again, didn't matter as I was so agressive anyway.
Have you had the BRAC testing? -- Not at this point. I had a bilateral mastectomy anyway and now no ovaries. I have a 32 year old sister who is not as aggressive as me (she wouldn't consider preventative surgery at that point) so I didn't want to freak her out unneccesarily. She is watched very closely. At this poin, i'm going to test b/c maybe i can talk her into surgery if it's positive. I know that is drastic but i don't think I can bear her to go through this too. I also think it might be helpful for future treatments as they are getting more customized.
Any differing opinions? -- My onc., Sloan Kettering, Cancer Institute of NJ, all agreed. A local onc (my mom's who knows the family well) said he would do radiation. My onc and I agreed that if my 3 month scan shows that it's working, I'm radiating. I also have name of an onc. at NYU who is supposedly more agressive with limited metatstatic disease that I might go see. It's exhausting.
I wish I went to Dana Farber instead of Sloan...I wasn't that impressed at Sloan and my onc. said Dana Farber is known to be more aggressive. Sounds like your daughter is getting excellent care both medically and family.
I appreciate your thoughts and positive support. Not a day goes by that I don't wish I still had my mom here to help me through this. I know I would feel so much better as she was very positive and we were extremely close. It's nice to know a mom is pulling for me, even if it's not mine :-)
Tess
Jul 19, 2007 06:19 AM JerseyGemini wrote:
Hi Kim -- Lots o' questions...i'll try to keep the answers short & sweet:Cchemo this time around? - No chemo at this point...all opinions said no, save the chemo for when/if it gets more serious. I'm not super at ease with that.
Maybe the PR+ will respond better to the hormonal treatment? I assume you are still Her2 negative? -- I hope the PR+ will help..I don't know if I am still HER2- b/c they couldn't test my biopsy sample. if another lesion that is easy to get to comes, I'll have another biopsy but they don't think this early into mets it would change.
CAM question -- I did acupunture all through chemo first time around and loved it...had tons of energy and little nausea all through chemo. Since then unfortunately no CAM. I just thought I was actively fighting with the tamox+lupron. I am going to a renowned CAM oncologist on 7/31 and expec a long list of supplements from him. I do take melatonin, Vit. D3 and C. I switched to organic dairy, fruits/veggies and drastically cut refined sugars/flours and artifical sweetners. I never ate much meat but now eat even less. Am going back to acupunture also.
Did you have vascular invasion in 2003? -- Yes, slight vascular invasion was detected...that's another reason I chose to be treated as if my nodes were positive.
Were you offered the OcotypeDX test? wasn't used back then...again, didn't matter as I was so agressive anyway.
Have you had the BRAC testing? -- Not at this point. I had a bilateral mastectomy anyway and now no ovaries. I have a 32 year old sister who is not as aggressive as me (she wouldn't consider preventative surgery at that point) so I didn't want to freak her out unneccesarily. She is watched very closely. At this poin, i'm going to test b/c maybe i can talk her into surgery if it's positive. I know that is drastic but i don't think I can bear her to go through this too. I also think it might be helpful for future treatments as they are getting more customized.
Any differing opinions? -- My onc., Sloan Kettering, Cancer Institute of NJ, all agreed. A local onc (my mom's who knows the family well) said he would do radiation. My onc and I agreed that if my 3 month scan shows that it's working, I'm radiating. I also have name of an onc. at NYU who is supposedly more agressive with limited metatstatic disease that I might go see. It's exhausting.
I wish I went to Dana Farber instead of Sloan...I wasn't that impressed at Sloan and my onc. said Dana Farber is known to be more aggressive. Sounds like your daughter is getting excellent care both medically and family.
I appreciate your thoughts and positive support. Not a day goes by that I don't wish I still had my mom here to help me through this. I know I would feel so much better as she was very positive and we were extremely close. It's nice to know a mom is pulling for me, even if it's not mine :-)
Tess
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I can tell you that we were impressed with the consult with Dana Farber. I would contribute part of my feeling to the fact that they classified her tumor grade down from the original II/III to a firm II. Maybe that seems desperate, but somehow I drew comfort from that. They also gave her the %s for improving her odds, by adding which treatment options. They read all the studies I had found about the NCCNs recommendations for less chemo for ER+ women; the study regarding tamoxifen on PR- women etc. They reviewed and really listened to our concerns.
You have done it all according to the recommendations, and more! I think that in the end you have to have peace with your choices. If you do have some reservations now about your next step, maybe it would be worth it to go see the dr. at NYU ?
They wouldnt do the Ocotype test for my daughter since she had a positive node. I was a bit angry at first that they refused her, since I had read a number of woman who were also node positive who got it! All of course only had a micrometastasis or a few cells found, but so was hers. Later, however I read that if you have a high Ocotype score then they would probably recommend a taxane, which of course she had done. So, I finally put that to rest in my mind!
Wow, a renowned CAM Oncologist! Sounds fascinating! Suggestion take the bottles of any CAMs youre taking with you, not just the list. He may want to see what additives/fillers etc. are in there. Some brands are also better than others and some it really doesnt matter. Ive found that iherbs.com carries just about everything imaginable and their prices are really the best Ive found. So far Ive placed three large orders with them and couldnt be happier.
I am sending you my warm and positive thoughts! I hope you get them
I will pm you my email address if you want to contact me!
Kim
Jul 20, 2007 05:43 PM KSB2006 wrote:
Hi Tess,I can tell you that we were impressed with the consult with Dana Farber. I would contribute part of my feeling to the fact that they classified her tumor grade down from the original II/III to a firm II. Maybe that seems desperate, but somehow I drew comfort from that. They also gave her the %s for improving her odds, by adding which treatment options. They read all the studies I had found about the NCCNs recommendations for less chemo for ER+ women; the study regarding tamoxifen on PR- women etc. They reviewed and really listened to our concerns.
You have done it all according to the recommendations, and more! I think that in the end you have to have peace with your choices. If you do have some reservations now about your next step, maybe it would be worth it to go see the dr. at NYU ?
They wouldnt do the Ocotype test for my daughter since she had a positive node. I was a bit angry at first that they refused her, since I had read a number of woman who were also node positive who got it! All of course only had a micrometastasis or a few cells found, but so was hers. Later, however I read that if you have a high Ocotype score then they would probably recommend a taxane, which of course she had done. So, I finally put that to rest in my mind!
Wow, a renowned CAM Oncologist! Sounds fascinating! Suggestion take the bottles of any CAMs youre taking with you, not just the list. He may want to see what additives/fillers etc. are in there. Some brands are also better than others and some it really doesnt matter. Ive found that iherbs.com carries just about everything imaginable and their prices are really the best Ive found. So far Ive placed three large orders with them and couldnt be happier.
I am sending you my warm and positive thoughts! I hope you get them
I will pm you my email address if you want to contact me!
Kim