LCIS

upcreek:

Did you join the Cancer society in Canada? It's a kind of "peer's support" for BC women.  I was told by them that very few ladies got ILC even,  so I guess there are very rare LCIS women in Canada. 

Hi fellow Canadians

I am still finding my way around these boards.  I didn't even know there was a separate area for Canadians only. 

Anyway, I was recently diagnosed with LCIS and multifocal ALH.  I would be curious to know how many others in Canada that there are.  When I asked my oncologists if he has other LCIS patients, he said he has lots.

Right now I will be having a breast mri, which we don't even have at our centre, so I will have to travel almost 1000 KM in Timmins to have one.  He said this will be the quickest, I assume over places in southern Ontario.  I am from Thunder Bay. The oncologist is also sending me for gene testing. He has reason to believe that there could be something else there now.

Take Care

Cathy

Mary--I'm not Canadian (upstate NY),  but I have LCIS and will be thinking of you tomorrow and praying they find nothing more going on  in there. Let us know how it goes.

anne

upcreek:  There is an "ILC forum" on this site,  and there are some women there in US got pleomorphic ILC  (not LCIS),  and some of them are very knowlegable.   Nash is definitely a very knowlegable lady there, you can ask her about this subtype of ILC.

Hi

 I am in B.C. I was diagnosed with Lobular and Ductal CI. I had two resections ans was advised to have Bi Lateral mastectomies. I did this Jan, 2007 with immediate breast reconstruction (implants)

It is never an easy road and I hae to say I have ben frustrated many times trying to communicate with Drs. when problems come up.

Sometimes I feel that because I had my breasts removed  there is no further treatment and just a pat on the head and off you go. I am on my own as far as what I consider to be complications from my surgeries.

 I am currently having problems with lymphedema and the advice I have gotten here is not all that helpful. I even called my cancer centre and they said " we only deal with chemo and radiation". Not much compassion or concern at all. I have bugged my GP for the last 2 years with problems with my chest arms and back. I feel like a hypocondriac (sp) I believe I have trunctal lymphdema and no one here has even heard of it here. As far as specialist go there are none.

I will be travelling to see a new plastic surgeon in a larger city. I sure hope he will have some answers for me

Sorry I sound so  bitter I just get angry and frustrated.when I am in pain and I have no control or anywhrere to go for answers where i live

D

Hi upcreek,

No, I had no node removal I aked my Dr and he said no I posted and Binney replied to some of my posts. I did not think it was possilbe to have lymphedema when I had no nodes removed under my arms. I was not aware of the Big picture at that time. I did have both LCIS and DCIS. I guess that is rare but it made things a little more complicated in someways but I was advised to have both breasts removed one was preventative and they found some unusual tissue there as well.

Honestly, I don't understand my Cancer Center not offering some form of treatment for lymph problems. The trunctal lymphdema seems to be a mystery to everyone here. I went to a Massage Therapist who's specialy is lymph massage and she did not understand what I meant when I told her about the other areas of swelling and tightness.

I guess we must seem pretty backwards here. It is frustrating when you have to tell your Dr's what is happening and they have no answers. I took and article to my GP and he said what can you do about It?  I said I didn't know so that was the end of that conversation.

I sure hope my appointment in Dec. is more productive. I am getting nervous as I have been waiting to see this Surgeon for 5 months now.

Thanks for responding

D

Devina, hello!

I'm horrified that you're still struggling with trying to get treatment for the stupid lymphedema. I sent you a private message.

Be well!
Binney