HI Lj,

I totally agree that the rules on testing for genetic cancer need to be looked at. In my case, it was on both sides of the family and, despite asking several times, I was never tested until I found my lumps. Even routine mammography missed it.

I sincerely hope that you can make some headway with this.

Kind regards,

Jolamine xx

Finally have an appointment to see someone (has been weird suddenly having no appointments in the diary!)

However, it isn't who I expected to see.  The two biopsies came back clear but they've reassessed the scans and don't trust the results (essentially they know that lymph tissue was biopsied but think the cancerous bits weren't caught by the biopsy).  So they phoned me to arrange an appointment tomorrow with my breast surgeon to discuss removing all 6 nodes for analysis.  I'm guessing that means surgery given the supraclavicular, infraclavicular and internal mammary chain involvement on one side plus axilla involvement on the other.  Hopefully day surgery.

Annoyingly any surgery will delay chemo and really I just want to get on with chemo, but needs must!

LJx

Totally understand that worry Marlyn.  It wasn't that long ago women were fighting to have Herceptin made available on the NHS, I remember it like it was yesterday.  So HER2+ was once a new type of death sentence and I think a lot of people's default reaction is to see is as a terrible thing.  It's still not a good thing, in my opinion, but there are some benefits in that there is targetted treatment for it.

Frankly I'm moaning about possibly having day surgery, which is pretty pathetic given what we're all going through :D  But when I know chemo is on the cards I just want to get on with it in case anything is growing.

Hi Lj,

How on earth are you coping with all of these setbacks? You put on a good face here on the forum, but you must be terrified under the surface. I hope that you can iron things out with your surgeon tomorrow and, don’t have to wait too long before you have your nodes removed.

Here’s hoping that you don’t have any problems with post-surgery healing and, you can get started on your chemo quickly.

Just remember that all of us on this forum are right behind you and wishing you well.

Kind regards,

Jolamine xx

Hi Jolamine,

Love you guys! xxx

I tend to just laugh at how ridiculous it is getting and feel bad for my doctors as they have to come up with something for it.  Meanwhile I'm feeling very healthy and having a good life so I really don't have much to complain about.  With not having periods still I'm in the least pain I've been in for decades.  And even if I end up on chemo for the rest of my life it won't be the worst experience I've been through.  Having this place and being able to help others really works wonders too.

LJx

So surgery is Monday.  A lot sooner than I ever thought they'd have available so that's good.  And last time they turned the biopsy results around in under 4 work days so hopefully they'll have a rush on it this time too.

They're just going to remove the two nodes they biopsied, so a superficial infraclavicular nodule and one of the right axilla.

The first could be done by local anaesthetic but the second they will need to "dig around" to find the affected nodes so it will be general anaesthetic.  Of course there is a chance that my surgeon only switched to doing it under general when I went all grammar Nazi on him!  Oooops :shocked:

Hi Lj,

Thank goodness you've got a sense of humour. It may be getting bad for your doctors, but I suspect that it is considerably worse for you, despite all the bravado you show.

I am delighted to hear that your pain has lessened considerably - thank heavens for small mercies!

I am glad to hear that you have your surgery scheduled for Monday and, am hopeful that they will push your results through as quickly as possible. Has your surgeon told you that s/he may take more nodes if s/he finds more infected ones whilst s/he is in there? This was what I was told, but fortunately there was no need for this.

I totally agree with you about the benefit we gain from helping others here. It really does help us too, doesn't it?

I shall be thinking of you on Monday and praying for as good a result as possible.

Kind regards,

Jolamine xx

At long last.....you live in jersey don't you? I read you sometimes go to Southampton for appointments? Will the surgery be in jersey? X

Hi Marlyn,

Sadly I do indeed live in Jersey.  Not that it's a bad place, just that I miss home!  At least I see the sea everyday though.

We have surgery and chemo in Jersey but we have no radiotherapy here so have that in Southampton.  I am still to be getting radiotherapy at some point, that will involve living in Southampton for 3 weeks, will be delighted to put faces to names if anyone lives in that area.

LJx