Newly diagnosed with Breast Cancer

[noiretextatique]

Invasive ductal carcinoma. so far i've had a lumpectomy and no lymph nodes were taken. i see the surgeon for a follow-up on the 13th, and i believe the results of the pathology tests.

i know radiation will be a part of the treatment plan, but not sure about chemo yet. i am dreading the chemo.

i've told my friends and coworkers, but i haven't told my mother yet. my little sister died from inflammatory breast cancer last year ,just two month after being diagnosed. i will tell mom after i know what treatments are recommended.

wish me luck with pathology report. the scenario i am hoping for is to be estrogen and progesterone positive, stage 1. so far, so good.

[mwdem]

1. Good luck, and keep us posted.

I'm so sorry to hear about your sister. I had stage II invasive lobular, diagnosed almost 2 years ago. My lymph nodes were clear, and I had a mastectomy, followed by chemo - 4 sessions every 3 weeks. It wasn't as bad as I thought it would be, but no picnic, for sure! Since I was estrogen positive, I'm taking Arimedex for at least 5 years (I'm 1 1/2 years into it). A great and informative website is http://www.breastcancer.org/. Please let us know how your report turns out.


:hug:

[noiretextatique]

2. thanks, mwdem

i signed up with breastcancer.org a few days ago...a great resource.
:toast: to your continued good health. i will post on Thursday.

[mwdem]

3. Thanks! Looking forward to your post!

Keeping fingers crossed.

[Imalittleteapot]

4. Best wishes.

I finished dose dense AC+T in late April. I was terrified by chemo but they've made so many advances in chemo treatment that it wasn't as bad as I had imagined. I never vomited and was rarely nauseated. Appetite changes, fatigue, sleepless nights and depression did a number on me. With the help of Lexapro and a sleep aid I made it through.

Good luck!

[noiretextatique]

8. thank you

i have been reading about you, and i am happy you are doing well.
thanks for the encouragement...i appreciate it greatly.

[pecwae]

5. All the very best wishes and vibes for you.

I dreaded the chemo myself. Like others have said there have been great advances made to prevent a lot of the side effects normally associated with it.

Keep us updated on the path report and your treatment. We're here for you and I'm very open to PM...been the route a few times.

:hug:

[noiretextatique]

9. thanks so much

i will definitely be posting here, PMing and doing whatever will help me through this.

[Tracer]

6. Yes, please don't worry about the chemotherapy!

So many advances in chemo have occurred since the last time I had chemo!

I'm now on chemo for recurrent cancer (Carboplatin and Gemzar) and let me emphasize that I've HAD NO SIDE EFFECTS AT ALL!

And dang, I've still got my hair!

[noiretextatique]

10. thanks, Tracer

i've been reading about you also. i am working on letting go of the fear, if for no other reason than the law of attraction. what you focus on is what you attract. if i have a better chance of survival with chemo, then i will do it, in spite of the fear, just like the many times in my life where i felt fear, and did what i had to do anyway.
thank you!!!!!

[Redbear]

7. Best of luck, noiretblu.

I'll be praying for you.

[noiretextatique]

11. likewise, Redbear

everyone in the this forum in now on my prayer list.

[Democrat 4 Ever]

12. Sorry to hear the news and wish you only the best.

I was diagnosed last July, had a double mastectomy, negative lymph nodes and had my third of four chemo treatments last week. I am scheduled for my fourth and last treatment on Jan. 2.

Chemo isn't fun but is something you can get through with a good oncologist, closely monitored prescriptions, listening to your body on what it can and can't do during the treatment time and a family that cheers you on. I can't report that I haven't had problems with the chemo but that was more my fault that anything. I had a bad reaction to the anti-nausea medicine in the second round and ended up back at the hospital after several days of being sick. Moral of the story - there are medicines to help immediately with the nausea (I kept saying that it would get better, that this is just what happens, etc. yadda, yadda, yadda. By the time I realized I was in trouble I had to have IVs and a change of scripts to handle the problem.) so don't hesitate to get help immediately if the drugs aren't working.

I'll keep good thoughts for you here in Kentucky and have my fingers crossed that you recover quickly.

[noiretextatique]

14. that's the plan

a quick recovery. i've been reading about you in this support group too, and i am glad you are doing ok. i've learned a lot from what i've been reading here, i won't hestitate to use the information.
:hug: Democrat 4 Ever Thanks!

[Irishonly]

13. Best of Luck

I am always relieved to say my chemo was equivalent to the dark ages when I had it 7 years ago. In total I was in chemo for close to a year. Chemo isn't fun but with support we all get through it. Does your cancer treatment center have a breast buddy program? My breast buddies understood everything I was experiencing. My group has experienced great joy and incredible sadness but my life has truly been touched by all of these remarkable women.

I don't get to this board nearly as often as I should. My daughter (17) was diagnosed with mono so I have been more focused on her lately. She's also a senior and it's crazy.

I am so sorry to hear about your sister. Cancer is insidious and knows no boundaries.

[noiretextatique]

15. i'm not that far along in the process yet

and honestly, i have been trying to focus on other things (like diet and exercise) instead of cancer.
after i get the pathology report things will change. i have some great resources: 4 friends who are breast cancer surviviors, and i will take advantage of other resources as needed.
thanks for the condolences.
take care of your daughter...and thanks for responding.

[Irishonly]

16. You Do Have Breast Buddies

That's just the term we use out here. Breast Buddies or friends are sometimes the medicine you need. Best of luck in the rest of your treatment whatever it may be. I will do my best to get to the board more.

[noiretextatique]

17. i am fortunate to be in oakland, ca

very near the place with one of highest breast cancer rates in the country, marin county. i am also fortunate to have insurance.

my hospital has a dedicated breast health center, and the other hospital i'm considering is one of top ten comprehensive cancer centers in the usa, uc san francisco.

there is a non-profit cancer center here for women that offers a lot of great services, including support groups. and, if i go on disability, i may even qualify for a really great place that offers free complimentary treatments to women with cancer...acupuntuncture, reiki, etc.

also, medical marijuana is legal in ca, and there is a cannabis club here that also offers free complimentary services to its members. my doctor would not give a prescription, but there are some doctors who will give me a prescription...for a fee, of course.

all in all...i feel fortunate to be right where i am right now.

[ulysses]

18. karen.

:hug:

Strength to you.

[noiretextatique]

20. hey ulysses

:loveya: thanks, my friend.

[JohnnyLib2]

19. Wishing you the best of outcomes.

I'll be watching for updates, too.

:hug:

[noiretextatique]

21. thanks, JohnnyLib2

i'm posting the update now.

[noiretextatique]

22. update: pathology results

2.2 cm tumor, with clear margins
estrogen and progesterone positive
Her2neu negative
clear lymph nodes
Stage 2 invasive ductal carcinoma

[ulysses]

23. ok, could be worse.

Have they said any more about treatment?

[noiretextatique]

24. i will see an oncologist next

from what i've read, standard treatment is radiation and/or chemo. plus tamoxifen for 5 years.

[JohnnyLib2]

27. That's what my wife had -- 20+ years ago.

Positive thoughts from our house.

[noiretextatique]

29. thanks!!!

for the good news about your wife. sending positive vibes back to you!

[flamingyouth]

25. Holding you in my thoughts.

2x bladder cancer survivor here. :grouphug:

[noiretextatique]

26. thanks, flamingyouth

:hug: i appreciate it!

[LiberalinNC]

28. Sending you good vibes!!

I'm a 14 year breast cancer survivor, there is life after diagnosis!!! :hug:

[noiretextatique]

30. thank you

i've been talking with a few breast cancer survivors and you all give me hope :hug:

[Forkboy]

31. I'm so sorry to hear this.

:(

You have my very best wishes, and whatever good vibes I have I'll send your way. I'm not using them anyways, so you can have them.

:hug:

[noiretextatique]

32. thanks, forkboy

and since i have a lot of good vibes coming my way, i'll send some your way :loveya:
it's been a scary month, but the fear is starting to subside as i get more information. knowledge is power...knowledge + action is empowering.

[noiretextatique]

33. I may be a MammoSite candidate

I see the radiology oncologist on Friday. I read up on him on the internet and I was impressed. I still want a second opinon, but so far my medical team is working for me. I want to fire my primary care doctor though...she way to scattered for my comfort.

Wish me luck.

[Contrary1]

34. Hi Sweetie...

Just wanted to let you know that I am flapping my wings here for you. I am a 10 year breast cancer (I won't dignify it with caps) survivor. Make sure you get copies of all lab reports, etc. It will help you to help others down the road.

I had two mastectomies, the second by choice. That ended up being a good move, given the pathology reports. I did not go through radiology, but I did have 4 chemo treatments of Adriamycin/Cytoxin. I took Tamoxifin for 4 years, 364 days. I flushed that final pill down the toilet. :) (I didn't earn my nickname for nothin')

You are right when you say that knowledge is power, but sometimes one simple sentence that you read will knock you to your knees. Please remember that you are an individual, you are your very own statistic. When you read something that you think may apply to your cancer, dismiss it. You were **not** a part of that study.

It sounds like you are doing it your way, which is the best advice I could give you. If there is anything I can help explain to you, please do not hesitate to contact me. That goes for anyone else out there going through this. I will help you through this any way I can.

I belong to an online support group that was of great comfort to me when I was first diagnosed. PM me if you would like the info.

Hang in there. You will make it through this.
Hugs. :pals:

[noiretextatique]

35. thanks, Contrary1

my main frustration now is that everything is closed, yet the MammoSite folks are pushing me to start treatment during the first week of January. I have yet to see a medical oncologist, nor do I have a comprehensive treatment plan, but the radiation folks are still pushing the MammoSite option.
But, I am not making any decisions until I see at least one medical oncologist. Thanks for the encouragement and info. I will PM you after I see the oncologist and know what's ahead for me.
Have a wonderful New Year!! :hug:

[flamingyouth]

37. Just chiming in here....

Good choice in deferring your decision until you see an oncologist. I was so happy I was able to sit down and talk to my oncologist (for 90 minutes, no less! I had so many questions) so I could sort out my options.

It sucks that the holidays put things on hold for a few days, but it's good to get as much input as you can, IMO. :hug:

[noiretextatique]

39. the problem is that i may miss the chance for the MammoSite

unless i see an oncologist pronto and everyone seems to be on vacation :argh: the waiting sucks!!! but hopefully i can see one on wednesday and still have the MammoSite option. i am confused as to why i was referred to the radiology folks without consulting with a medical oncologist first, but they said they had to get me in quick to make sure i qualified for it.
i have to do some more research on MammoSite, but if i can have radiation in 5 days instead of 8 weeks, i will do it. as long as the oncologist agrees that it is a good option for me. thanks, flamingyouth...this forum is a godsend for me. :hug:

[flamingyouth]

40. Oh, yeah, that does suck.

Oy. Well, hopefully you can get in on the 2nd and sort things out. I'm holding good thoughts!

Keep us posted and keep talking - we're all here for you, dear. :hug:

[Auntie Bush]

36. I'm sorry to hear that Noiretblu... it must be scary!

I just have a feeling you're going to be fine. Sending many prayers your way.

[noiretextatique]

38. thank you...i appreciate your confidence

and that of others, because mine is shaky right now.
it's really scary, but less so with time. Have a Happy New Year :hi:

[midlife_mo_Jo]

41. Wishing you all the best

I just finished treatment this December.

For your peace of mind, you might want to consider asking your surgeon if you could have your lymph nodes biopsied I had three sentinental nodes checked - all negative. That gave me great peace of mind. That peace of mind was VERY important to me.

[noiretextatique]

44. three sentinel nodes biopsied...all negative

thank goodness. i am glad you are finished with treatment, and i hope you are doing well :hug:

[Contrary1]

42. Need an update here! What have you found out?

I'm here, if you need me.
A fellow breast cancer survivor. :pals:

[noiretextatique]

43. update

i finally met with a medical oncologist last week, and she referred me to another radiologist. it seems my inexperienced surgeon didn't have the common sense to refer me to a medical oncologist after my surgery.

instead he sent me to a brachytherapy center which tried to sell me on mammosite, and i do mean SELL.
they rushed an appointment with me just before Xmas to determine if i qualified for mammosite, then LIED to me and told me i did.

a friend of mine was very suspicious, so she emailed my pathology report to her oncologist, and that oncologist told me i should definitely get a second opinion before doing mammosite.

so...i had to wait until after the holdays to get my surgeon to refer me to a medical oncologist. anyway, i finally saw the oncologist, and she got me an appointment with another radiologist the next day. the radiologist convinced me that mammosite was not for me, so i fired the other folks and hired her.

in the interim, the brachytherapy people, and my surgeon were both pressuring me to get the mammosite, even while i was telling them i would not do anything without a second opinion.

so, here i am, almost six weeks after surgery, and my oncotype dx test was just ordered. i am getting measured for beam radiation on tuesday. if the test indicates i need chemo, i have to do that first, then i will do radiation. if the test indicates that chemo will not benefit me, i will start radiation. the test takes two weeks, so i should know something by the 25th.

if i had a more experienced surgeon, and if i had been more proactive, i would be further along than i am now. but, at least i have a good team now.

that's it...i will keep you posted.

[Democrat 4 Ever]

45. I've got my fingers crossed for you. My Oncotype Dx test

came back that I had an 8% chance of a recurrence of cancer thus chemo not really needed. Unfortunately my result had gotten lost and I didn't find that out until the day after I started chemo. I took three rounds of chemo and then my oncologist and I decided I didn't need that last round. So as of January 2nd, 2008 I am officially through with chemo and cancer. I'm taking Femara for the next five to ten years (Oncologist first said five years but my the time I finished chemo the "powers to be" now recommend ten years - I'm thinking the drug company is the one recommending the ten year regime. It costs $321.00 a month in my neck of the woods.)

Hope you get as good of news and it won't take five weeks to get your Oncotype test results.

[noiretextatique]

46. my oncologist said it would take two weeks

so hopefully the results will be back next week. i am claiming a low score too. thanks for your crossed fingers, and i am sorry you didn't get your results before undergoing chemo. that truly sucks.

my new tasks: i have to find a new surgeon and another primary care doctor. my surgeon's inexperience with oncology protocol cost me a month of waiting unnecessarily. i am having a pet scan tomorrow, but i should have and could have had it a month ago. i have a follow-up with him next month, and the way i feel now, i would likely knock him upside his head. so i will find another surgeon to avoid that possibility :7

as for my primary care doctor, she blurted the initial pathology reports to me over the phone: invasive ductal carcinoma. i saw her in december for a pap smear, and she sent the results in a letter. i had to ask her several times for the results of my blood tests, and she glossed over the results and casually mentioned my bad cholestoral is a little high. i am not sure what her problem is, but i don't feel comfortable with her...at all.

at least my oncologist and radiologist are on top of things.

[Auntie Bush]

47. I will say a prayer for you and send you healing energy.

The best of luck ever. It's a scary thing to be going through. The anticipation is half the battle. Once you're settled in to a therapy
and you feel in control of the situation...you'll feel better. It's the not knowing that makes one so anxious.

My husband went through radiation last year and he was really up tight about it till he actually got started. Then he went through it with flying colors and went directly to work afterwards...no problem. However, a lot depends on where you're radiated and if they know what they are doing.

[noiretextatique]

48. i am thankful to be at a great hospital

with a dedicated breast center. my radiologist is great and i have one of the best oncologists in the area.
the waiting is hard...and you are right, once i know what i am facing, it will be a lot easier to deal with.
the waiting just sucks, especially since i have been waiting so long.
i'll check in on your thread...i am holding your husband and you up with positive thoughts :hug:

[noiretextatique]

49. another update...sort of

i have been waiting two weeks for the oncotype dx results. i called the oncologist today and the insurance authorization just came a few days ago. so...it will be another two weeks before i have the results. what a screw-up this has been!!!!!!!!

i called today to file a complaint against the surgeon and the brachytherapy center. i asked the surgeon about the oncotype dx test when he gave me my pathology results on Dec. 13th. i should have demanded to see an oncologist then, but i thought he knew what he was doing. the brachytherapy doctor flat out lied to me about mammosite. both of them were so determined to do mammosite, but other things should have been happening. then, i had to wait because of the holidays to see an oncologist. now things are finally on track, still...even more waiting. :argh: i am so sick of waiting :argh:

[noiretextatique]

50. i start radiation tomorrow

the radiologist says it won't make a difference if i do chemo first, so i will start radiation tomorrow.

[mwdem]

51. Good luck, noiretblu.

I hope this goes well for you. Keep us posted.

[JohnnyLib2]

52. Best wishes for the treatments.

[karmaqueen]

53. every good thought coming your way

Good Luck, God Bless, Good vibes, You are on your way now!

[noiretextatique]

54. update: oncotype dx

my doctor's assistant called and told me my oncotype dx test is "ok." so, i am now waiting (as i have been for 6 hours) for her to fax the test results to me so i can see what she means by "ok." :argh: apparently they are busy, so it take hours to send a fax :eyes:
in the interim, i'll assume "ok" means i don't have to do chemo :woohoo:

[noiretextatique]

55. oncotype dx score is 16

which puts me at the higher end of the low risk category. this score means that i have a 10% risk of distant recurrence in 10 years, with 5 years of tamoxifen. i think this pretty much rules out chemo :woohoo: but i will know for sure when i talk to my oncologist next week.

[karmaqueen]

56. It sounds like good news to me!

I don't understand all the medical stuff but I am so happy that it seems like you will around for a long time, GREAT NEWS! Over the last few years so many of my friends have found out they have BC and I am happy to say that they too have been given good news. It is wonderful that it seems that there is progress with the detection & treatment. You will always be in my thoughts and prayers.

[noiretextatique]

57. no chemo!!!!!!!

:woohoo: my oncologist confirmed it today. she said chemo would not help me enough to warrant the risks. :woohoo:
i am almost done with radiation (only five more zaps to go), and then i will think about tamoxifen. i amy do a clinical trial which might require me to go through menopause (depending on which leg i get assigend to), but i have to get more information on it before i make that decision.

my oncologist feels that aromatase inhibitors might work better than tamoxifen, but i'd have to either have my ovaries removed, or take and injection to shut them down to take an aromatase inhibitor since i am pre-menpausal.

i am so relieved about the chemo, because i absolutely did not want to do it.

[Tracer]

58. Good for you!

Chemo is no picnic (as I ought to know, since I'm back on it)

[karmaqueen]

60. Tracer, hope & pray you get good news soon too.

I will keep you in my thoughts and prayers that the chemo knocks it all out of you for good.

[Forkboy]

62. Sorry Tracer.

My thoughts will be with you.

[karmaqueen]

59. I am so happy for you!

I check all the time to see if there is any news, you have been in my thoughts and prayers. May you continue to get good news.

[Forkboy]

61. That's great news!

I remember my mother going through chemo. She handled it well but it didn't look fun. Glad you're being spared that part at least.

:hug:

[Uben]

63. Wowser, no chemo!

That's great! My wife had stage 2B invasive ductile breast cancer. She elected to have a radical double mastectomy and reconstruction. She elected to opt out of both chemo and radiation treatments, against the will of her doctor. The cancer did not go systemic, and her margins were clean after lymph node dissection.

She did take Tamoxifen and Femara for a few months, but it was so hard on her, she stopped that, too. Afterall, if she had a re-occurrence, they would just give her the same drugs for it.

That was five years ago! We celebrated her anniversary this month! Of course, you're never cured of cancer till you die of something else, but that five year mark has been a goal we have been waiting for!

Here's wishing you all the best wishes in the world, and I hope we can celebrate your five-year anniversary right here on DU!

Regards,

Uben

[noiretextatique]

64. thanks, everyone

i am all done with radiation, and about to start tamoxifen tomorrow. i have been leery about taking it, but even the naturopath i saw recommended it.

i want to thank you all for your support and best wishes. it really meant a lot to me while i was waiting...and waiting for test results, etc.
:loveya:

[ulysses]

65. keep us looped, Karen.

:hug:

[Forkboy]

66. Very glad to hear things are going along ok.

My mother was leery about the Tamoxifen too, but she took it anyways, with no ill effects that I know of.

Please keep us updated as you go along. :hug:

[OzarkDem]

67. Glad things are going so well!

Sorry I haven't checked in here in a while, but glad to hear you've gotten through this so well.

[noiretextatique]

68. tamoxifen is not as bad as i thought

i've been on it for a month now, and just had my first blood test. everything is normal, and the only side effects so far have been hot flashes, which really aren't too bad.
thanks ulysses, forkboy, and ozarkdem...and everyone else. i really know what it means to be grateful after getting through this experience relatively unscathed.

[ulysses]

69. glad to hear that!

:thumbsup:

Hey, are you still writing?

[noiretextatique]

70. not so much these days

but i imagaine i will release a flood of stuff when i start again.

[emilyg]

78. I was on Tamoxifen - you're so right

about the hot flashes. Thinking of you.

[Robyn66]

71. I have the same cancer!

Good luck with your test results! I am dreading the chemo too. I have to have a fine needle aspiration of a lymphnode, but I am so glad yours are fine.
Take care,
Robyn

[madmax]

72. Wishing you luck and strength

:hug:

[noiretextatique]

73. thanks, madmax

:hug: same to you. this morning i got the results of my genetic test for BRCA 1 & 2 gene mutations.
the result was: NO MUTATION! :woohoo: last year during the holdays i was so despondent i could barely get out of bed. this year i have a lot to celebrate. i am cancer-free and turning 50 on the 24th :woohoo:

blessings to all my friend here who helped me get thru this year :loveya:

[auntAgonist]

74. Congratulations noiretblu! Cancer FREE!!! Merry Christmas.

Enjoy all of your milestones and celebrations.



:hug:

this is wonderful news.

aA
kesha

[Longhorn]

75. That's fantastic!

I'm so happy for you! Happy Birthday! You have so much to celebrate! :hug: :bounce:

[latebloomer]

77. What a difference a year makes!

Continued health to you in 2009!!

[mwdem]

79. Just checked in and saw this.

Congratulations! That's the best news you could have gotten! Hope you had a great birthday...50 isn't so bad now, is it?:bounce:

[noiretextatique]

80. nope...50 isn't so bad

i'm glad to be alive and in relatively good health :hi:

[Tracer]

76. Excellent!

Congratulations to you!!!!!!!!!

[noiretextatique]

81. hey Tracer...how are you?

i haven't seen an update on your situation :hug:

[Tracer]

82. Doing just fine, thanks.

Am having no problems whatsoever (knock on wood). Have another CT scan scheduled for some time in July and hope it will go well.

In the meantime, I've got a vacation planned a few weeks from now --- am heading off to Xpu-ha, Mexico for a week of lazing on the beach!



P.S. I liked your old name. It was very pretty.

[noiretextatique]

83. yes it was...but it was a downer

so i wanted something more upbeat. :woohoo: i am so glad you are doing well. have a great vacation!