Pleomorphic ILC

Me again (talking to myself !)

I rang the doctor and i'm going to do a head scan as well. Happy with that now

Hi Marie-Edith

I'm not familiar with this so are you able give your doctor a call and ask him/her?  What about a PET scan as well ? Try researching on internet ?

Chrissy

Chrissy -

I've been off Aromasin about a week and a half because of the side effects.  Tomorrow (actually, since it's early morning, today) I will be seeing my onc about starting Tamoxifen instead.  But back to Femara. 

My 82 year old mother has been taking it since she finished treatement 2 years ago and hasn't had any issues.  For the first 6 months she noticed more hair than usual falling out but that stopped and she has been left with a full head of hair.  For some reason her onc has not sent her in for a bone density scan so I can't address the bone issues.

I guess my point is that I'm on to estrogen blocker number 2.  I'm not real excited about it but I know if that doesn't work then I still have Femara or Arimidex to try.  Our bodes are so unique we just don't know what will work until we try it.

Marie-Edith - as far as I know no scans are planned in my future except for the MRI/Mammo/US routine every 6 months. My onc said they don't like to expose us to too much radiation yet my DH has to have a CT scan every year since his bowel cancer. I think the risk of recurrence is greater for him as he had a met in the lung which was removed 4 years ago.

Also, you can't get a PET unless you have diagnosed mets and they are scanning you to see if you have others which would preclude any surgery to remove the mets - my DH had 2.

BTW - our daughter lives in Adelaide.

Sue

Marie-Edith - lucky you, I love the Hills. Thanks re DH - he's absolutely fine - very lucky his lung met was in a position to remove easily - they did it with cameras!! I think he has one more CT to go and the onc says he can finish. I worry they don't check on us. I just had a brain MRI (ordered by an ENT). I talked him in to it as he was investigating my tinnitus problem and wanted to do a CT scan. I asked him if it showed brain tumours, so he changed his mind to MRI. It only cost me $7.90 as I've hit both safety nets. All clear BTW, but it gives me some peace of mind seeing my onc hadn't checked my head out at all.

Sue

Chrissy - Can you come down here and see someone else?  You would really love my onc. Just shows you what you've got to put up with in the public system. What a bitch!!!  Why are they suggesting Femara and not Arimidex? You really should try taking something - the SE's are really minimal and I know my onc was really worried about how I would react. He told me to take fish oil, caltrate and glucosamine, so I do. Maybe the fish oil helps with the SE's. Also, why don't you see an onc for each Herceptin tx - that's standard when you're private. I know it's hard for you being stuck up there.

Sue

Marie - Chrissy's problem is that she lives in Hervey Bay - no private hospital there, so she is forced to go to the public hospital for the rest of her herceptin tx's. To see a decent onc she would have to travel to Brisbane. As it was, she moved temporarily to Perth to her sister for her chemo treatments.

Sue

Thanks so much for your replies - been up at Bundaberg doing a little retail therapy and not on the computer until now  

when I first came back from Perth I did see an Onc at the Greenslopes Hospital in Brissy for a couple of months until mid June.  He was the one who suggested having my Herceptin Tx in Hervey Bay to save me the travel etc. not realising that there was no private hospital and just what that would mean.  I also have to pay for and PICK UP my Herceptin from a local Chemist before my treatment and take it with me, because the Public Hospital will not dispense it to me, because my script is from the Private Hospital, Greenslopes, in Brisbane.  Never had to pay for it before when I was private.  But, hows this, the Hospital asks me to be a PRIVATE :PATIENT in the oncology unit, because it can make more money for them.  Well, I said yes, because honestly, I want the best treatment I can possibly get.

Next week when I see the breast surgeon in Brissy, who is also at Greenslopes, I will see if I can also see my old Onc and ask him to 'clarify things for me'.  I will ask about the other drugs, arimidex and aromasin and maybe they may be a better choice.  I'm weakening, and will no doubt give one of then a try, and see what happens.  If I have any bad SE's I will stop.

Chrissy

Hi Suzie

About $35.00 each time.  I believe my health fund use to pay for it when I was at private hospital.  Just did some research on your Onc Dr David Grimes.  He looks like a nice guy -  approachable? and he is interested in studies.  I will be seeing my GP on Tuesday next week, I talk to her about a referral.  I would be able to see him at Wesley, get the train down and then train out to the hospital.  Not hard, just need the time.  Had my radiation at Wesley (stayed int he area also)  so I know it pretty well, as I do the train system.  Would be really great to find someone who takes the time to explain things to me and also, talk about any supplements that I might need while taking Arimidex or Femara.  No one has mentioned anything about this.  I had good bone density now, but no doubt that should be monitored and maybe some supplements recommended (like yours) and then I think I would feel better about taking this medication.  Very scared of loosing my bone quality.  My mother has oesteoporosis, had had it for about 20 years, she is 88 now.

Chrissy

Hello Ladies with PILC,

Just wanted to pop in and say hi on the third anniversary of my diagnosis. It has been a rough road, most recently with anxiety and depression leading up to this day. But, I must say I feel very well today-maybe some type of anniversary reaction. I know this is an important milestone-my onc said most recurrences happen in the first 2 1/2 years. I will see him next week.

Life goes on-in the past 3 years I've seen my son start high school and my daughter start college. We have had losses in our family, but marriages and new homes, too. I have been through 2 jobs, and have an interview for another on Thursday. I have been to Ireland to visit family. I have made loads of new friends, and lost of few who evaporated when the going got rough 3 years ago.

Here's to life,

Catherine 

Woohoo Catherine - congratulations!!!!

Hi all, I've been a lurker on these boards for some time and have only recently posted in the HER2+ thread but I've read through much of this thread and just thought I would share a bit of my story to maybe offer some hope. If it helps even one person then it's worth it I think since this is a fairly small percentage of BC diagnosis.



I don't know how to post my stats in my sig so...I was diagnosed in 2000 at the age of 28 (yes you read that correctly) with Pleomorphic ILC, ER 10% +, PR-, HER2+, grade 3, 2cm tumor, 1 positive node. I tested negative for BRAC 1 & 2, no family history. Rather unusual as I've learned. I was lucky enough to participate in the clinical trial for Herceptin at the time and received the Herceptin arm of the trial(and I was really grateful for that). I had a lumpectomy, AC x 4 then Taxol x 4, one year of Herceptin then radiation. I did take tamoxifen for 2 years until I developed complications and decided to stop.



Anyhoo...I'm 10+ years from diagnosis with no recurrence. I'm not saying it's been an easy road, and there have been many scary points along the way but....I'm still here thriving, surviving, and living life. I've seen many friends in the last 10 years go through the BC battle. When I was diagnosed at 28 I knew nothing about BC! Since then, ironically, two of my close friends have been diagnosed under 40.



I feel it's kind of a crap shoot. Statistics aren't everything. Geez, if I believed what I read at the time I'd have been a goner by now! There are so many advances in the medicine and treatment approaches now that you can't go by those old statistics! Plus, everyone is different. I've seen people with worst diagnosis conquer and continue living their lives.



Who knows what the future holds but I'm still here.... so I'm going with it! My motto is - hope for the best, pray for the best, and expect the best! That all we can do.



So, that's my story and I'm sticking to it! Hope it helps someone out there!

Thanks, dottiesb! I agree with the crapshoot part. There seems to be no rhyme or reason as to who recurs. I have seen women who throw everything at cancer and recur and others who had "only" a MX and are still here over 20 years later. I hope to see you here for another ten!