STAGE-3C

Vacation - do you really think MOs are that evil?

I think every person in any Industry selling any type of commidity or product has an angle and MO's are no different. I do not trust anyone as I myself am a sales person and although I do not lie or decieve, I can be very convincing and even resort to scare tactics to make my point. All I'm saying is use your best judgement-the Marker tests are designed for a reason and starting July 1st, there is a genomic test available to detect Ovarian, Breast, Pancreatic, Colon, Melanoma Cancer's but I guess opposer's don't want to know about that either.....

Kicks: My Tamoxifen failed after only 3 1/2 months-I had daily bleeding, just like a period, and I had a normal pap smear and pelvic exam before starting the Tamo but when I went to the Gyno/Onc, my Uterine lining was inflamed with a detection of a growing ovarian polyp and a cervical cyst with metaplasia setting in. Plus my eyes were damaged as a result of Tamo-I had perfect vision before starting Tamo and I had deteriorating and blurred vision and as a result, I now am wearing corrective lens. They call it a CYP2D6 Polymorphism and you can also be test for this too-out of pocket, of course, but poor metabolizer's of Tamoxifen will develop Uterine Cancer. I just had my Hysterectomy last month and the Gyno/Onc said I was lucky to have insisted on the surgery as she said my Uterus was a patholoigical mess!!! KICKS-How do you know your NED if you have no markers to guage that synopsis by?? Just curious.....

Yes, exactly!!! I know this, I was asking how "KICK"S" knew about being NED w/o any follow up tumor marker testing.....

3Cbrca--I am so glad to hear your story. I have not read of anyone else having as many positive nodes as me (22/22) and it frankly worries me to no end. Had a lumpectomy, Wondering if I should have had a double Mastectomy. Am getting radiation now, had chemo and will be getting tamoxifin as well as herceptin for 6 more months. It's so good to hear you are doing so well. God Bless and take care!!!

I agree, I have never heard of any oncologist making treatment decisions based solely on TM's. Again, they don't always correspond to what is really going on inside one's body. And it may be that at first they correspond well, but as the cancer mutates, that correspondence changes, perhaps even to the point where one's TM numbers are practically meaningless. If your TM's give them reason to think your lesions may be shrinking quickly or even gone, or if the TM's give them reason to think your current treatment may not be working (i.e. the numbers are trending upward), they will order scans to see what's really going on in there and then base treatment recommendations upon the results of those scans. Just remember, scans emit radioactivity and relying solely on scans cannot detect microscopic activity that a TM may be able to detect first.

Ali, that is fantastic! Congrats!

Cheers Ali (me too)!!

I had 10 nodes removed last October and I don't have lymphedema...and hope I never do get it. There is some magical node removal number (cant remember the number exactly...12?) my BS mentioned that statistically is supposed to give you a greater risk. But, she wasn't all that convinced. Many people have seen a physical therapist and they found it very helpful. Also, I believe there are LE specialists too. Check out the LE section on this site...I believe it gives you info on how to detect and how to prevent.

Grace-The tissue around the breast area could be back up from lymph drainage of the arm, are you manipulating the lymph fluid in your arm upward? It's an easy procedure, you don't need to go to specialized clinics. Watch a Youtube video of "Lymphedema Self Massage" Mild LE is hard to detect so measure your arms on each side and then a few days later, measure again-keep doing this until you get a good idea of what size your arm actually is (with the LE arm, size will vary) this is due to the lymph fluid going in/out of your arm. I sleep at night with a pillow propping my arm upward so my fluid doesn't back up into my lower arm as it can get stuck there and it is hard to manipulate out. If this happens, it feels very hard to touch and is tender.

As far as the scar tissue, that is banding that toughens over time-a PT can work it out with deep massage and heat ultrasound. Mine tightened up and got worse over the months until I couldn't move my arm, I went for a arm/shoulder MRI and found out that I also had tiny tears in my median and radial nerves ffrom the breast surgeon pulling the nodes out-it happens....after taking Celebrex, Gabapentin, PT, Tens unit, heat ultrasound, daily shoulder exercises, I am finally able to lift my arm halfway-it will still take another 9 months to completely heal. 

vactionbound -



A TM test does not diagnose cancer. It measures a substance that is produced by BOTH benign and malignant cells. My Drs say I am NED and have been for 2 1/2 yrs so I will go with what they know -not the ramblings of some one with their own personal agenda (who says as a 'salesman' they will use fear tactics to sell what ever they are selling [in this case TM tests]). I am not one who can be bullied by such tactics. IF in the future, they feel a need to do them - so be it - I will. Just as I will do what scans may be needed in the future. In the past 2 1/2 yrs I have had3 different scans - they were ordered for particular issues at the times and ruled out mets. The only scheduled are an annual mammo on remaining breast and a bone density test (have osteoporosis).



I still don't see how Tamoxifen 'failed' you - you had a relatively common SE but an ER+ recurrance or mets, which it is to prevent, didn't happen while you were on it (at least you didn't say it did).



Remember that we are each unique individuals! Your IDC is not my IBC! There is no 'one size/way' fits or is right for all.

I was challenged as to how I could be NED without a TM test. A TM test does not diagnose Cancer. It shows a substance that is produced by both benign and malignant cells.



I am, thankfully, NED and Stage III after 2 1/2 yrs. I am IBC (Inflammatory Breast Cancer). Because I haven't had a TM Test does not change that at all.

Thanks for your comments about your LE experiences.

I'll start looking for an LE therapist in the chicagoland area.

Off to my 3rd AC chemo today!

Enjoy your day!

Hello, I just wanted to post that I am celebrating seven years this past may.  I promised myself that I would check in at least once a year.  But I am sure like so many other stage 3c ers....life gets in the way.  Hang in there.  I actually have days when I don't even think about cancer!

Naomi...thanks.  Days when I don't think about cancer.  What a luxury to look forward to.  Thanks for the hope.