Grade 3 ER+/PROG + HER2 +

Gretta

Hi Girls, I'm really keen to hear from any of you with the above dx.  I haven't been coping well & need to hear some positive news.  I had 8 cm of DCIS with multifocal IVC measuring 2.5cm.  My pathology showed a KI 67 of 30 which I know is high for recurrence, also necrotic areas in the breast taken.  I really wanted a BL mastectomy but the surgeon said there was no evidence of disease in the Left.  Now have a lump in the remaining breast which on U/S looks normal.  I'm really scared because I know what was removed if a very aggressive form of breast cancer.  I'm frightened I won't respond to the treatment & when the treatment finishes the cancer will take over.  Need to hear from some girls with similar dx who are doing well.

Trisha-Anne

Hi Gretta

I responded to your post in the Aussie Sisters thread, but wanted to clarify - are you also doing Herceptin?

Gretta

Yes, Trisha-Anne, doing Herceptin for 1 year

Trisha-Anne

Herceptin is the game changer for us girls with triple positive. Hopefully what I wrote in the Aussie Sisters thread will help - but please talk to us about your fears, it really helps to get over them when you can talk to others in the same boat

I'm almost four years out from surgery, and doing really well

Trish

xoxo

Gretta

That's very reassuring that you're 4 years out.  I really hope I can say that too one day. 

Just wondering when you were on treatment did you have any issues with pain in ribs or back?  I've mentioned it to my oncologist, he said if it was still there is 6 weeks, he'd order a scan.  Trouble is I'm scared now.

 

Trisha-Anne

I developed pain in my lower back that was quite troublesome. We couldn't work out what it was, so after around six or seven weeks I went for a bone scan - it turned out to be arthritis.

About six months after that I found a lump in my "good" breast. It turned out to be a fatty cyst.

Eighteen months ago I developed pain in my right ovary area. This started out low grade and intermittent and over the next twelve months became very painful. Of course we were all thinking mets. I had two cancers in my breast - IDC as well as ILC and ILC has been known to travel to the abdominal area. So it was a very worrying time. Had tests, and it turns out I've developed irritable bowel syndrome (IBS). The first and easiest thing for me to do was cut out lactose - and the pain disappeared immediately.  I'm still having issues trying to sort out what foods trigger different symptoms for me, but I'm getting there.

I'm telling you this because we get all sorts of things that cause pain or discomfort, and they are nearly always something else. I was like you and worried myself sick wondering if the cancer had come back, and even when there wasn't any symptoms thinking it was going to come back anyway.

That's pretty normal - but you have to get to a point where you stop worrying. I decided that it wasn't worth worrying over something that may or may not happen. If it happened, then I'd have to deal with it. If it didn't I would have spent a lot of time worrying over nothing.

I'm pretty good at being able to compartmentalise most things when I have to. Not everyone can do that, it's a trick you have to learn.

You may find that talking to a counselor who specialises in cancer patients will help - I talked to one. I was having trouble getting myself back to what I thought "normal" was. She helped me understand I'd been through a long and very hard road, and it would take a little time to get there and to go easy on myself - she was right. At around the two year mark post dx I was pretty much back to me emotionally - not quite physically, but I'll never be that woman physically again. And that's ok.

If your pain is strong and you've had it for more than two weeks, it's generally recommended that you get it checked. It's very unusual for bc to spread while you are in treatment, but it does happen - although rarely. If your onc doesn't want to do a scan sooner, then go to your GP. Usually pain that is caused from mets is quite strong pain - ie you can't sleep because of the pain and it's almost constant. If yours isn't like that - then relax a bit and see what happens over the weeks. It's also possible that chemo is giving you some pain. 

I had taxotere and had quite strong bone pain from it.

I know it's easy to say relax and don't worry about it. But you do need to learn how to do that, otherwise you'll spoil the rest of your life. You don't go through cancer dx and tx to spend your life worrying - you are meant to celebrate being alive! If you do have trouble though you need to see your GP - some people can't help but be anxious and worried and there's medication that can help with that.

When do you finish tx?

Trish

xoxo 

Gretta

Because my margins are so small, I just can't stop worrying about mets.  I'm only 50 & felt like I was 30 before this hit.  Have been seeing a pysch to try & help me but nothing seems to help.  Just overpowered by the pathology.  Just feel so lost.

I appreciate your kindness & advice xxx

Trisha-Anne

Gretta you are only just finishing a punishing round of chemo. You are going to feel scared and overpowered for a while to come yet. We all go through what you are going through.

It's really hard to come to terms with, and going through chemo does terrible things to your body - but it does even worse things with your mind. Chemo really messed with my head and I had a hard time getting over the emotional side of it.

I really worried about it coming back too - we all do. Give yourself time. You are still getting through tx.

It also helps to come on here and vent - you are talking to people who "get it".

Sorry it's taken me so long to respond to you - I have now put this post on my favourites.

Crissyb - from the Australian Sisters thread is also very good to talk to - she's the "mother" of our group lol.

Feel free to PM me if you ever need to as well.

Take care

Trish

xoxo