Hi Gadgetgal,

Not exactly what we were hoping for on Friday!

This leaves you with another 3 anxious weeks of waiting and wondering, but it sounds as if you are ready to meet it head on – good for you! I am glad to hear that your surgeon is approaching things cautiously.

I have been left with bilateral lymphoedema and have to wear elastic sleeves from my shoulders to the tips of my fingers most of the time. This is in both arms, so can be quite uncomfortable. I also attend the lymphoedema clinic for 2 weeks, twice a week in every 12. Here I get some manual lymphatic drainage and then get 5 layers of compression bandaging. I have to keep these on until my next visit, so for 2 weeks I look like a real live Michelin Man! I have to be very careful what I wear at this time because I am limited, as the bandages very seldom fit in coats, jacket sleeves, blouses, etc. This generates some very strange looks from people and I get some very curious questions about them.

It also reduces the number of things I can do when I’m wearing them, so if there is any way that you can avoid this, I would recommend that you try. I have only had 6 nodes removed on one side and all of these were clear, so I was surprized that I got this. I understand that the more lymph nodes you have removed the greater the possibility of getting lymphoedema.

I sincerely hope that the Oncotype DX test shows that you are one of the 70% who will respond to radiotherapy.

Love the sound of the purple wig!

Regards,

Jolamine xx

Thanks Jolamine,

Ikm so sorry to hear about your lymphoedima. My mother had it badly in one arm, and that was the reason I was so keen to avoid lymph node removal (ALND). In her day there was virtually no treatment offered so I’m glad there is more that they do to try to manage this, even if you do end up looking rather odd. My consultant is dead set against routine ALND, as am I, so unless I get recurrence I am not going to have any more lymph nodes removed the time round. Finger crossed there isn’t another time round!

best wishes,

Gill

Hi Gill,

My mum complained about sore, swollen arms immediately after her mastectomy, but nobody gave her condition a name or treatment options.

I am glad that you are aware of this possible outcome and are doing all you can to avoid it.

I sincerely hope that there isn't another time round for you!

Regards,

Jolamine xx

Annabelle

Went through my entire treatment in state of one step removed

Once diagnosed things move so quickly it's hard to take time to even think

Kept a diary which was helpful as wrote raw emotions & practical events in

Family & friends brilliant but also having to deal with diagnosis

You'll find 2 guardian Angels step out shadows to accompany you on long journey ahead

Plenty advice available, use toothpaste without sodium laurel sulphate to avoid mouth ulcers (Aloe Dent)

Start skin care now as you need it to be tip top, Aloe Vera cream not gel

Get organised & plan friends who can cook for you

Let the world pass on by & go with flow of what you want to do wehn you want to do it

Wishing you well on that journey & may your destination be complete remission

Thinking of you

Savvysue

Hey ladies. I was diagnosed last year and had lumpectomy, sentinel node biopsy and 6 weeks of radiation. I felt the same as you Annabelle but I can honestly say this forum was and still is my godsend. As much as loved ones try and help and support, no one gets it unless you've been thru this. And you all WILL get thru this.

I was ok and had a minor panic when I was being wheeled into theatre. I've never had an op ever in my life or anaesthetic so it was fear of the unknown in all respects. Whilst I was going thru all the treatment the actual emotional impact hit me months after treatment as I thought I had accepted it but I guess I didn't. Deal with those emotions and listen to your body. Everytime reacts differently to every stage of this whole journey.

I am still dealing with fatigue but others don't so go with the flow. Take time out for yourself and talk with someone who isn't emotionally linked with you

 Support groups are helpful and like I said this forum is amazing. We are all on here to support not judge in any way. So remember you're not alone and we are right here as and when you need us.

Keep us posted. Do what you need to do to get thru this. I won't lie - it wasnt easy for me but I'm stronger and have changed the flow of my life along with other changes. You will find out who your real friends are going thru this and that goes for family as well. Keep strong and remember it is extremely good it was detected early and you're on the radar and being treated. You got this!!!