Pleomorphic ILC

Marie-Edith

Hi everyone,

I've recently finished treatment, chemo & rads and my doctor gave me some CT scans to do. I have chest, abdomen, and bone. I am wondering if he should have given me a head scan as well ? I had supraclavicular lymph nodes involved ?  The scans are tomorow.

Thank you  

Marie-Edith

Me again (talking to myself !)

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

Gitane

Hi Marie-Edith,  I think scans of the head are more common if you are Her2+ or triple negative.  However, if you want them, I think asking your oncologist would not be out of line.  Will the chest scans cover the supraclavicular region?  Are your scans PET/CT or CT?  I will be with you in spirit tomorrow and in the days ahead as you wait for the results.  Find some really good distractions!!!     Lots of hugs, G.

I just saw the update.  Good for you!!! 

ChrissyG-Australia

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

ChrissyG-Australia

Hi Everyone

Is there anyone out there taking the oestrogen blockers - Femara in particular - that can tell me something good about it.  My doctor is still trying to persuade me to take it (saw my doc this morning) but I am too scared to take it.  I live alone so its up to me to support myself (going back to work in a couple of weeks) and I want some quality of life.  5 years on this drug sounds just too horrendous ?

Chrissy

Gitane

Hi Chrissy,  I have been taking Femara since the beginning of 2006.  At the beginning it was difficult.  I hurt all over, I was tired, I was depressed (I already had hot flashes, so that wasn't new).  My body has also aged very quickly.  Some of that was undoubtedly because I had just finished 6 rounds of AC, 5 surgeries, other personal losses, and ending a long working career.  But I am here, alive and very functional almost 6 years after my diagnosis.  At the time I started taking Femara I did not think that was possible.  I also thought Femara wouldn't work for me because I am PgR negative.  However,  I am here.  Whether it's Femara or not I don't know.  I may still relapse, who knows.  I'm very glad I stuck it out and took it.  I never have stopped, even for a short while.  At my last follow up my doctor told me he thought I should continue taking it, so that's what I am doing.  In my opinion, it's a matter of knowing what to expect from the drug and learning to take the steps necessary to give yourself the best possible QOL.  When I started taking it I had no idea that what I was experiencing was because of my treatments and this drug.  That made it a lot harder than it needed to be, I think.

ChrissyG-Australia

Thanks for that Gitane.

You have stated some of my fears. 

Aging - bone problems - menopause - again !! These are only a few. Hair Loss or thinning and the bone problems being Oesteoporosis.

What effect does Femara have after 5 years ?  Does it still 'work" ?

Chrissy G

AnacortesGirl

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

Hello,

Thank you for the information everyone

Gitane : They were CT scans. I hope the chest scan would have covered the supraclivicular. My last one did i think but i will get in touch with the doctor for confirmation.  You have been through so much Gitane, i'm glad you are doing well  I asked the ER+ 20 % again to my BS who gave me a different response than my onc. At biopsy i was ER+ 80 %, because a biopsy only takes a small amount of tissue. My BS says that even though i am 20% ER+ the tamoxifen will act on these cells, and he says that cells interact with each other, so if one is programmed to die, it can also have a ripple effect. Well i hope anyway It is a nice story

How often do you ladies get checked out with scans ? Never or once a year/6 months ?

I am happy with the results. We can't see anything so i'm very grateful for the chemo i did    The bone scan reveals some degenerative bone disease. I beleive this is osteoroposis ?

Chrissy G-Australia : Hi i am from Adelaide !! I really don't know what scans are best CT/PET ? i am kind of lost !! Hope you feel well and good luck with your return to work

XOXO

suzieq60

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

Hi Susieq58

Thanks for the info. I am very sorry to hear about your husband. I understand about the scans. It's not the routine then unless there is something wrong or at high risk. It's very cold here in Adelaide, even worse i live in the hills !!  But it's so pretty

Take care

suzieq60

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

ChrissyG-Australia

Hi girls

need to talk to someone.  Seen my New Oncologist today.  She was rather 'intimidating' and I dont usually intimidate easily !!  She talked to me about taking Femara and virtually told me that I only have a 65% chance of staying alive or non-recurrence, if I dont take it (ten year stats) 
She brought  some chart up on internet, put my data into it, and then got these answers.  I was shocked.  My last Onc told me I had 80% chance, even without the Femara ??? She then proceeded to tell me that everything I have read about side effects is exaggerated or not true ??? She wouldnt listen to what I had to say, only what she said was correct, and said to me "I have another patient waiting and I need to go, so I will be direct.  If you decide not to take the Femara I will not see you as often - only every couple of months or so.  If you take the Femara I will see you every month.  Talk to my Registrar (assistant) and give him your decision now."  Wow, talk about 'my way or the highway' and then she left the room.  The Registrar sat down and said "so you will start taking it ?"  I looked at him and disolved into tears.  Hadnt felt so bad for a long time.  I said 'No' I go back to work in two weeks, where I am supposed to manage a department within a Govt Organisation.  I dont even know if I am up to this, let alone start this drug at the same time ?  I told him I would go to work for a few weeks, see how I cope with this, and then give him an answer at my next appointment, which is going to be in August. (He decided not to make me wait 2 months)  I'm thinking I will have to stop working if this drug has the 'imaginary' side effects that I have been reading about.  Also I live in a two storey town house, so the stairs may become a very big challenge.  I have no husband or partner in my life, so this adds to the difficulty of choices.

Chrissy G

suzieq60

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

suzieq60

You could probably get in to see my onc when you come down to see the new surgeon. He goes to the Wesley and Chermside and Nth West Private and Greenslopes.

Sue

Gitane

Hi ChrissyG,  You are having such a hard time with this.  I wish you were being guided by a more compassionate oncologist who could at least help you with the decision making.  Have you considered giving Femara a try just to see what the SE's are for you?  It may turn out that you are O.K. with it and can take it while working and living alone.  

Marie-Edith

Hi Susieq58,

That's great news for your husband and for yourself ! I gather a MRI then is better than a CT scan. You're absolutely right to ask for the best. I will keep it in mind for next time.

Hi ChrissyG-Australia,

I feel so sorry for you. Your onc. seems like a bully and it's certainly not nice to be treated that way especially us who beleive everything we are told. I suggest changing doctors and could you take a friend with you ?  research as much info as you can RE the meds and side effects. I think it's important that you are happy with any decision you make. Good luck  

XOXO

suzieq60

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

Marie-Edith

Hi Suzie,

Yes i understand now !! It's difficult i guess. Brisbane would be good of course. Aren't there any other big towns closer to Harvey Bay. I did all my treatment (except surgery) in the public hospital and it was fine, i was not treated badly ! I hope Chrissy gets her problem solved soon

Take care

ChrissyG-Australia

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

suzieq60

Chrissy - how much do you have to pay for the herceptin - it should be free!!!

ChrissyG-Australia

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

suzieq60

Chrissy - He is really fantastic!!!! You wouldn't be disappointed.

Sounds like you are paying the NHS price, so that's good. It actually costs $75,000 for the year.

Sue

cathmg

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 

Gitane

Hi Cathrine,

I'm so happy that you came here to share this with us.  I remember very well my 3 year milestone, like a tiny bit of weight was taken away.  Anxiety and depression go with the endocrine treatments.  Some of it we just can't control, but knowing why it's happening helps some.  So many good things happening in your life.  Your onc will surely tell you that this is good news. Breast cancer is such scary stuff,  I'm glad we can find hope and strength together.  May this anniversary reaction carry you forward for many, many years.  Giant hugs,  G. 

suzieq60

Woohoo Catherine - congratulations!!!!

Marie-Edith

Hello Catherine,

Thank you for sharing your story, it's great news. I've just finished treatment and i'm sure there will be many anxious times ahead for me two  

dottiesb

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!

Racy

Thanks for sharing your story dottiesb and cogratulations on reaching 10 years. I really like your motto :-) .

sueinfl

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!