Calling all TNs

Titan - Regarding whether you should have a hysterectomy after Menopause - I am not exactly sure but I have 3 or 4 small fibroids, and recently my endometrial lining was looking a little thicker than normal on a pelvic scan so my gynocologist did an endometrial biopsy (painful).  You will notice most gyne's will tell you that after menopause the fibroids and everything else will begin to dry out, since estrogen level goes down at menopause.  I was thinking on the same lines, meaning if there is anything which looks even a little abnormal, due to being TN, I would have a total hysterectomy, meaning take the uterus and ovaries both out, just to be safe, although cancer can even come without one having a uterus or ovary. Sorry, this doesn't answer your question directly.

Claire - I was told by my first BS that insurance will now approve an yearly MRI for me.  If one has breast cancer, an insurance company approves the $4K MRI for the woman every year.  I have heard that Christina Applegate (the actress) is working with some group to bring to the attention that all women should have a right to an MRI, not just BC patients, since MRI is the ultimate test which tells all and save lives.  I plan to insist on both mammo and MRI.  I had a mammo in Jan. 2010, and they missed it, I was given a clean bill of breast health.  My Onc. says they missed my cancer on the mammo.  I don't trust a mammo at all, however, you need both a mammo and MRI as you will notice on your reports that they like to "correlate" the findings and compare between the two.

Once something comes up on your MRI or Mammo, then only will they send you for a diagnostic Ultra Sound.

I am meeting with my Oncologist on December 1st to ask him what his plans are for monitoring me for 3 years after treatment.  I want him to tell me exactly, what the plan is.  Every 3 months - what?, Every 6 months - what?  I am terrified of mets and want to make sure I am covered.

Event though everything sounds so great, believe me, it is difficult to cover everything with your doctors.  One can only accomplish so much at each doctor visit. All we can do is try and insist since it is our lives which are at stake, not theirs.

Heidi - lovely picture!  This week (actually most of the fall) has been unbelievably great weather in Toronto - I'm enjoying my walks/jogs and noticing nature sooo much more than ever before.  

Titan:  I had a good conversation with my BS on my check-up last week, inquiring about an ooph. My understanding is that the procedure would be considered when: 1.  your cancer is estrogen-sensitive, and your ovaries are still producing a lot of estrogen (maybe despite tamoxifen) which could feed a recurrence - obviously this scenario doesn't apply to us at all; and 2. if you are BRCA +, which I realize you don't know.  Even if you aren't tested, you may want to talk with a genetic counsellor if you haven't already to set your mind at ease... here in Ontario, you aren't considered even moderate risk for hereditary BC (qualify for testing) unless you have TWO 1st/2nd degree relatives on same side of family with BC less than age 70 or OC any age; OR ONE 1st/2nd degree relative with BC before menopause.  After menopause,  a single relative with BC is considered much more likely to be a completely random/coincidental event (as post menopausal women are at higher risk of BC anyway).  (1st degree relative would be sister, mother, daughter; 2nd degree relative: aunt or grandmother)

My BS also said the linkage between BC and ovarian cancer is only because of the BRCA abnormality.  I take that to mean that outside of the BRCA+ population, it doesn't really exist. As I'm BRCA-  she said my odds of getting ovarian cancer are just like any other woman on the street (very low). I'm not sure if this helps you at all - just thought I'd share...

Hi!

My daughter brought home our yearly X-mas tree ornament.   I am so fortunate that she loves everything about X-mas.   

Heidi - my radiation oncologist discharged me as a patient in August after seeing me for one follow up after radiation ended in April.  He said since I was also being seen by the medical oncologist, I no longer needed to see him.  Both he and the medical onc work out of the same cancer centre and he said it wasn't necessary.  I see my GP and my medical oncologist each every six months.  So I will be seen 3-4 times per year.

I was dx at age 29 with TNBC with Mets in liver and spots on lung, 2/20 lymph nodes tested positive for cancer.  I was allergic to taxol so I ended up on Abraxane 9 doses, AC I think 6 doses, Surgery Double Mastectomy, Abraxane 3 doses, infection chemo stopped had to switch to radiation and then 5 more doses of Abraxane.  My scan after radaition was my first NED in August 09, but just to make sure they gave me more Chemo and in Oct 09 it was still NED.  I see my ONC every 3 months and communicate via email, I see my onc surgeron every 6 months, haven't seen my radiation dr. since my last radaition treatment.  I know that my GYN has been following my case via the computer since everything UNC has every done is on the computer, and my ONC sends her notes about me.

Hi girlfriends. I've missed you all. I'm still on my roller coaster. I went for a 2nd opinion on Friday up in Indy. Wacko wants me to start radiation this week on my lymph area. I explained I wanted chemo first to get a jump start on killing these cancer cells that may be floating inside of me after having 14 positive lymphnodes. She claimed that I have been cured temporarily and she felt that the AC and Taxol ha worked because my tumor was not "that" much bigger at surgery than it was when I was first diagnosed. I explained the amzing decrease in size of it and my lymphs after about 5 Taxol and then the sudden increase in size in just a coupld of weeks. She implied that I had maybe imagined it. My onc had not put in her notes that she couldn't even find or feel my tumor at 5 Taxol. She also told me to stop any and all supplements, herbs etc. there was no scintific evidence and she thought  it could hurt my so-called treatment plan. So needless to say I am seeking a 3rd opinion at Sloan Kettering and have an appt Nov 23. My doc/friend has me scared and says I shouldn't wait for 3rd at SK because I need to start chemo this week. He has not yet found anyone to give it to me. My current so called onc has not returned my phonecalls from last week and her nurse said that onc has not had time to go over my info to determine what her plan is for me. So I am so excited to get a 3rd opinion at SK and they also have integrative docs which is really important to me. So I'd like to take a poll. What is the advise of all of my girlfriends on here which are on the same boat. Scared s***less about mets. 

hydeskate- What does NED mean. I'm assuming it's "In the clear". I am so happy for you and it gives me so much hope. 

Hhfheidi- Just love the doses of laughter you bring. Keep them coming girlfriend. 

Titan- Everything is important. Now you have me so curious about what you wrote.

The best thing that happened to me today hasn't happened yet. I'll keep you posted. LOL 

HI! laurajane,

Doc Bill is still your good luck charm.   You going to SK to get 3rd opinion about PARP or what you should take 1st, chemo or radiation?  Your 1st oncologist may not like you getting 2nd and 3rd opinion, and if you're showing your true picture, it's possible that she or a staff member has been reading your posts.   Cover your butt.

to titan, hahaha, love it, and your off chemo?  been there too. k

ditto that everything is important as well.
Diagnosis: 9/25/2010, IDC, 2cm, Stage IIa, Grade 3, ER-, HER2-

Titan:  I cannot tell you how many times I have done that and I was too tired to even try and repost. LOL!

Laurajane:  I sent you a PM.  My third opinion was a charm!

Hydeskate: So glad that you are NED and came hear to tell your story-thanks so much for sharing.

California thinks it's summer again so I am going outside to enjoy!  Have a great Sunday everyone.

LJ- the onc I saw at Sloan-Kettering gave a time frame for starting chemo after surgery. It was something like 84 days, and had to do with the life cycle of the cell. Ask when you go to Sloan. I'll look for her name in my files and add it back here later.

Diana Lake was her name. If you Google MSK you will get a link to all their physicians' online bios.

Laurajane,

I feel trouble around every corner, and hide behind my cat.

Titan:  Completely understand where you're coming from!  Besides, without a strong family history, the odds are strongly in favor of being  BRCA- .  At least one study showed that only 11% of trip negs are BRCA+ .

MBJ- hmmm... probably if they don't subside in a few days I'd give the doc a call, just for peace of mind.

Thanks Heidi & Tiffany for replying so fast.  No, I usually don't get swollen glands.  I emailed both my Onc and my regular dr. and they said if I am sick I shouldn't be concerned.  I guess I will just keep an eye on it.  Have a great Monday.  It is beautiful in California today.