hello 614! Yes! Totally caught off guard. Complacency was my middle name for years. How'd you get your PLCIS to post in your diagnosis section?

They found and removed one PLCIS w stereo static biopsy and found another w lumpectomy. Was going to publish it but it wasn't allowing me the choice.

I'm glad your daughter's lump was ok

Well said Girl53. I can think of other threads where this should be pointed out. Thanks.

girl and Woody, Very good posts.

Dear Marmie:

I had a hard time trying to figure out how to use the signature line too.  I think that I went into "settings" and was able to write something in the "signature" line.  I remember having to change the icon to the one that looks like an eye so that others could see what I wrote.  I don't really remember how I did it, but I hope this helps.  Good luck.

Dear everyone else:

I like everyone's posts.  They are really helpful.

I am having my next Mammogram, Sonogram, and MRI on Monday, 11/23/15.  I cannot wait.  The tests will give me peace of mind no matter what the outcome.  I currently have one suspicious area (1.8cm linear non-mass enhancement with rapid washin washout kinetics) that was detected in May that could not be biopsied at the time.  I am on a 6 month wait and watch protocol.  I also have a golf ball sized hematoma from my MRI guided biopsy that was performed in May.  This has been a very long 6 months for me.

Good luck to everyone here and Happy Thanksgiving.

Dear Marmie:

You may have to change the icon from the eye to the world icon. I don't remember which way. Good luck.

frustration! My insurance company did not pay for the genetics testing and without a spare $3,000 to pay for it out of pocket , I do not have that test to aid in my decision process. Going this Tuesday for MRI instead to see if anything "lights up".

Without the genetics, doc was not in favor of BMX. His recommendation was lymph node biopsy followed by radiation. I'm not wholly comfortable with that. At the very least - with that right breast having ILC, PLCIS, LCIS, and cell hyperplasia , I want the right breast gone.

I explained to him wanting resolution before the end of the year due to insurance deductible and out - of - pocket expenses being met. He said he understands that but the decisions I have to make are serious ones and should be based on complete information. He said the decisions I make cannot be rushed.

I burst into tears after he left. I went into that appointment with a plan (in my mind) and was left with more waiting and more uncertainty. I naively thought this process would be easy and clear cut!! Hahaaa!

My next appt is Dec 1 to get MRI results. I'm not sure what he means about the cancer lighting up!

It's all so confusing and fills me with panic to get things done quickly but I don't want to be driven by emotions. I need facts. If the MRI is inconclusive , I guess I will have to make a decision based on what I DO know, not what I fear may happen.

Marmie,

My insurance company did not pay at all for the genomic testing. I paid a full 6,000$ for the test. It was worth it for me. Since it showed that i am her2 + even after a FISH done twice which came out negative.

I am ILC, and i have LCIS in my right breast. I had a lumpectomy first which showed positive lymph nodes. So had another surgery sentinel dissection and he explored all the area and what he found was shocking. My original tumor was less than 1 cm and what he found was 23 nodes from which 21 were positive for metastatic cancer. But after the second operation my margin were clear, however i went from stage 1 to stage III . So i did full cycle of chemo ACT followed by radiation which effect my lung capacity by 5% but did not have a big impact really and i am a heavy smoker. Then we discussed mastectomy and the surgeon explained to me that removing my breast will only discrease my chance of local reoccurrence by 10% . So i seeked a second opnion and a third from Germany. The second doctor said to me all that was needed to be removed is removed the operation is not easy i do not advise to remove it . If after 5 years if you are still cancer free then he will considerate. Germany , well , he said they do not perform mastectomy since 20 years unless the whole breast is full of tumors. They discovered that really it did not make much difference if the cancer wants to come back it will, whether you removed it or not.

I was put on femara , and at the end of year three i had a reoccurence , i am now stage IV and have been for the last two years. The genomic intellingent testing confirmed my her2 plus it gave the names of chemos and targeted therapies from which i could benefit .

I am now clear and have been for the past year. I am only on targeted therapy for her2 and tamoxifen . I never regretted not removing my breast , in my case whether i had removed it or not it would have been back.

At the end it is really a personal decision , just make sure you do what you are comfortable with the help of professionals . Seek different opinions on this then make an informed decision.

I hope you find your way, relax so you can think clearly even though i know it is very confusing and scary when dealing with cancer but after a while you will adapt and you will start feeling much better. You will be able to tell your doctor what you need and what makes you comfortable. Keep your hope and faith.

I was diagnosed with PILC, bifocal PLCIS, invasive tubal carcinoma, as well as the benign conditions of ALH, ADH, sclerosing adenosis, PASH, hyperplasias, and many other benign findings.  My doctor recommended the double lumpectomy, radiation, medically. Induced menopause and then arimidex/anstrazole rather than the bmx.

It is a personal decision and you need to do what makes you feel the most comfortable. Get a second opinion and fond a doctor who will honor your wishes.

There is a thread that talks about genomic testing for $299.00. I don't  remember whhich thread but search this site for the info.  

Good luck.

my BS told me today that 50% of women with ILC in one breast will get it in the other one. Can anyone point to the research to support this? I'm a newby and need to make a decision about BCS vs MX, but I may also consider BMX if this is true. Any thoughts or advice?

artist ,

It is a good idea if your doctor or you suspect it. Me upon my liver biopsy they noticed a chage 2+ in her2 this is why they sent it for FISH testing which more accurate than IHC . BUT even then it showed negativity. So i took the sample to another sample to my country and the same things happenned two pathologist saw it and assereted it was full of her2 but again the test showed negative.

When sent to germany they performed a test called CISH which is approved by the FDA but not in standard use yet , pharmaceutical politics . This test confirmed i was positive but still my onc did not believe it she called germany and talked to the guy who performed my test , he told her this women is full of her2 , you had better start her right away on her2 targeted therapy. I was on xeloda at the time which was giving me a partial response , sloan kettering advised to add herceptin. By my onc where i reside refused he said i want to start you on herceptin/perjeta/taxol. So he did and the response thank God was more than anyone expected.

So if you have any doubt or your doctor suspects you may have mutated to her2 it would be a good idea to test again but you need a specimen .

Let me know if you need any info. I do not believe genomic testing cost 299 if it is a genomic intelligent testing and done at a scientific research facily it would be much more and here it is not covered by my insurance . So search before you do it . It has to be a good scientific facility. It has to be send through a medical center.

Wanted to mention that I recently purchased the color kit for $199 (on special during October for breast cancer awareness month). It took two days for the kit to arrive. And the turn around time for results, including mailing it to them, was about 2 1/2 to 3 weeks. My results were negative BTW.

Artist,

It is your right to ask your onc anything specially if you suspect it. I belive the test jojo s referring to is the BRACA testing. The one i did is totally different it studied each and every aspect of my specific cancer and did not perform the hereditary gene testing which is BRACA.

I too prefer you to be doing jewelery and playing Guitar and i hope you will soon.

Artist,

You should ask her anything and she must be able to answer. If you do not feel comfortable with her or you do not feel she is on top of things, please look for another who more qualified. I hope you will get to a place where you can rely on your doctors more than on yourself. Chemos cause all sorts of side effects not the same on everyone. I think she should have taken your complaints more seriously and also checked why your liver enzymes are elevated if she confirms no progression.

You are in my thoughts and prayers, no worries though , if you know your body then you will know how you are. Take care of yourself.

Thanks Woody, she did send me over to a liver specialist and they are going to team up. I live in a small, snowy mountain town and we have 3 oncologists. I still don't know enough to know if she knows enough......I am sure a large part of it is my general anxiety. But will take your advice and consider that if I continue to feel doubt. I have another blood test Monday to see if the numbers went down on the Ibrance break. In order to try and rest and take care of myself we went to Santa Barbara for the 5 day Thanksgiving break from work. Was so looking forward to soaking up some sunshine but alas, it was FREEEZING!! BooHOo! Spent a lot of time in the hot tub instead and ate too much. Did get a great family photo session on the beach though! Thanks Lily for that info, more food for thought.

yikes! Just got a call that surgery is moved up to December 11. More time for recovery before cmas but less time to prepare!!