Thanks everyone for your reassurance, it really does help. I think I was worried as I know the cancer is still there at the moment, didn't want it to start increasing in size again, especially after going through all that chemo. But as you all say, they wouldn't risk leaving it so long if this was likely. I am on the phesgo injections, which apparently will keep this from happening. I have an oncology phone call on Monday, so I will delay booking flights until I know they are happy with date of surgery. Hoping to get the results of my ct lung scan too.

NGS, just wondered, do they use dissolvable stitches when you have surgery? Hope your healing is going well.

Carol, I hope you are feeling OK after your radiotherapy.

Greeny80, hope all is going well with your radiotherapy, nearly there!

Jolamine, thank you for your continues support, hope you are keeping well.

Hope you're all managing to stay cool in this heat, it has been a little too hot.xx

Hi Pippin 

how did your call go with the oncologist ? 
absolutely yes all stitches are dissolvable.  
things are getting tight now which is likely stitches healing.  It’s a weird feeling as I have sutures internally holding implant in place 

xx

Hi Pippin,

They run a number of different courses - all of them well worth attending.

I am just loving this weather.

I hope that all goes well for you today and that you can arrange to go on holiday after this.

Kind regards,

Jolamine xx

Hi Carol, you'll have to let me know how the moving forward course goes, it's something I might be interested in. I have been fine while going through treatment, but think I might struggle later with fear of a recurrence. So pleased to hear that you had a lovely relaxing weekend. Just sitting here waiting for oncology phone call at the moment, then off to have stitches out of my foot. Tomorrow I have phesgo injection and my first zoledronic acid infusion. Also have an mri booked in next Monday, to check out blood vessels for diep flap reconstruction. Xx

Hope everyone else has enjoyed a lovely weekend and you're all feeling ok. Xx

Thanks, will take a look. I too am loving the weather, it's gorgeous. Will update later, hoping I might be able to book the flights today, fingers crossed they'll be some available. Accommodation was booked a year ago, but didn't book flights when I got diaignosed in January. Really didn't think we'd be able to go and I'd have to cancel. Xx

Hi Pippin. 
how have you got on today ? Really hope you’ve got dates and a plan 

xx 

Hi NGS, had oncology phone call which went well. She didn't seem concerned that surgery wasn't until the 8th of October, as I'm on the phesgo injections. Had my stitches in my foot removed and all healed well. I'm due my next phesgo injection tomorrow along with first zoledronic acid infusion. Only thing is everything I've read online say you start infusions after surgery  but I haven't had surgery yet. Might put up a post to see if anyone has had it before surgery. Always seems to be something to stress about. On a positive note, I've booked our flights for our holiday. Xx

Hi Pippin

I had my first zoledronic infusion in May and then surgery in July.  My surgeon was not concerned by this at all and I’m not aware of any complications from it.  

woohoo to booking the flights 

xxx

Thank you do much for your promp reply, I can relax now. I was worried if I had it tomorrow and shouldn't be having it yet, it might affect my surgery going ahead. I seem to be stressing more at the moment, can't wait to get back to my walking tomorrow. Hopefully will relax me a bit. Xx

Hi jolamine 

did you take letrazole after your mastectomy ?   I have suddenly come out in itchy rash around my scars.  Not a septic rash;  no temperature etc.  but only thing different is I started  letrazole last Tuesday.  

really do not want a trip to a and e on bank holiday Monday 

xx 

Hi NGS,

Yes, I did take Letrozole after my double mastectomy, but never had a rash around my scars. I hope that you managed to get through the Bank Holiday, without having to go to A & E. If so, why not phone your breast care nurse on Tuesday and see if she can do anything to help you? Please do let us know what she advises.

Kind regards,

Jolamine xx

Hi Pippin / Greeney / Carol and Jolamine

Gosh everyone this rollercoaster just never ends 

the rash has spread to both breasts along both scar lines.  It’s itchy and red. 
im not unwell and it’s not hot to touch 

I saw the breast team and they are unsure.  Not infection related but could potentially be allergic reaction to letrazole.   I’m seeing my surgical team Thursday for them to assess. 
they mentioned biopsy and now I’m in panic mode.  Is it inflammatory breast cancer in the remaining skin ? The fact that the surgeon found more cancer in my breast has totally freaked me out these last 2 weeks despite hi  “ removing it in mastectomy “ 

I’m also very worried if I have to stop letrazole.  What does that mean in terms of preventing recurrence.  

my return to some kind of normal feels so far off I’m struggling to find any positivity right now 

xx 

Hi Pippin / Greeney / Carol and Jolamine

Gosh everyone this rollercoaster just never ends 

the rash has spread to both breasts along both scar lines.  It’s itchy and red. 
im not unwell and it’s not hot to touch 

I saw the breast team and they are unsure.  Not infection related but could potentially be allergic reaction to letrazole.   I’m seeing my surgical team Thursday for them to assess. 
they mentioned biopsy and now I’m in panic mode.  Is it inflammatory breast cancer in the remaining skin ? The fact that the surgeon found more cancer in my breast has totally freaked me out these last 2 weeks despite hi  “ removing it in mastectomy “ 

I’m also very worried if I have to stop letrazole.  What does that mean in terms of preventing recurrence.  

my return to some kind of normal feels so far off I’m struggling to find any positivity right now 

xx 

Hi just reading your comments earlier I was just wondering if you could be having an allergic reaction to the metal ports either side that you mentioned ,a lot of people are allergic to metal , regardless I really hope its nothing serious  and that there's a simple explanation .

Hi Jenny 

ah I hadn’t thought of this.  I just need an answer I guess.  The forever waiting and not knowing is the worst.   
xx

Yes of course you do ,it just seems strange that its both breasts ,It wouldn't surprise me at all if that's the cause of it ,its why I can't wear ear rings but I really hope its something along those lines xx

Hi NGS,

I'm sorry to hear that the rash has spread, but glad to hear that you have seen the breast team. I hope that your surgical team can give you more answers on Thursday. There are alternative treatments to Letrozole, so don't start worrying about what may never happen. Have you taken photos of the rash? This is a good way to keep an eye on progression - as they say "a picture paints a thousand words"

Not knowing, is always a worry, but here's hoping that there's a simple explanation.

Kind regards,

Jolamine xx

Goodness NGS.  That sounds uncomfortable.  Sorry to hear you're going through this.  Glad you've seen the breast team and it doesn't sound like they are overly concerned, so I would take some comfort from this.  However, I know how uncomfortable rashes/allergic reactions can be.  Hopefully they will get to the bottom of it.  And definitely follow Jolamine's advice and take photos.  Good luck with the surgical team on Thursday.  Let us know how you get on! 

 Pippin24  NGS  I saw my consultant yesterday and he has agreed I can have infusions  rather than tablets and has swapped me from ibandronic acid to zolendronic acid.  I start on Thursday.  How are you both feeling now?  I will have the first one at the same appointment as I have my immunotherapy, but am hoping it won't be too bad!!  I might take an overnight bag, just in case!

Hope everyone is doing well and enjoyed the bank holiday weekend. 

Carol xx

Hi everyone,

Just reading through all the messages.Sorry have been slightly absent. Spent 10 days in Jersey with family and kind of went off grid so just catching up.

NGS Like the others have said i'm glad you've managed to speak to someone from the breast care team.Hope you can get some answers soon. I hadn't realised you had metal ports still in, could well be an allergy to that..i would mention that. Glad you're not feeling unwell though and no temp, that's definitely a positive.

And like the others say there are other drugs aside from Letrozole - i'm currently on Anastrozole and apparently that's the same but is actually better tolerated (according to my oncologist) So there will definitely be options if letrozole is what's causing the rash. Either way i hope you get it sorted soon, keep us posted and in the meantime sending positive vibes your way and hope tomorrow's appt can provide some answers.

How is everyone else doing??

Carol1964  Great you can now have infusions....i too will have Zolodronic acid at some stage so would be good to hear how you get on with that.

I have an appt on the 17th September with my oncologist,i think just a follow up appt after radio and to update on how i'm finding the drugs (Zoladex and Anastrozole) and hopefully get a date to have my port removed! So far the drugs are ok i think...definitely some hot flushes but so far manageable...slightly achy legs but i'm trying to up my exercise to get back to pre chemo weight so it may just be that!?!? they say side effects peak at around 2 months so i still have another month or so to see if the side effects worsen but so far it's all ok and i do feel like energy levels are back to normal which is so nice ......just to give everyone else some hope that a new normal is possilble!...so far anyway.....i think there will always be an underlying worry that something will come back and i think there will always be reminders with regular appts,checks,injectionsnetc...but life is back to as normal as it can be for now!..

sending love to you all xx

Hi NGS,

How did you get on today? I hope that you are a bit further forward.

Kind regards,

Jolamine xx

Thankyou for the support everyone 

I saw team again today and they remain not overly concerned.  They do not think it relates to letrazole as limited to along my scars. Equally they said if allergic reaction to implant or ports would be whole breast and around port area.  The lollipop wands they gave me Tuesday have helped and it wasn’t as red.  They have give me another stash of them - it’s cavilon a barrier film.  They have also prescribed high dose anti biotics.  They want to rule out any potential infection before considering anything else.   I have to take 3 tablets every 6 hours so setting alarms for during the night.  However positively I’ve only had 2 doses so far and I can already see the rash is fading.   I feel hopeful by this

oh and I get to take the compression bra off for a bit at night. Woohoo. 
feeling a bit more positive that it may not be something sinister. 
I also saw a friend Wednesday not seen for ages.  She is 8 years in remission from lymphoma   It was good to have a frank conversation about all my worries and niggles. 
when I see the oncologist I’m going to request a PET scan.  This will give me some reassurance then as the recent cancer did not show on CT or mammogram. 

 Pippin24 goodness me no wonder you needed to rant.   Amidst all our treatment it’s hard to deal with mixed messages.  I would speak to the chemo suite and failing that schedule a call with oncologist.  I found my chemo team were excellent at sorting issues and would email oncologist there and then for clarification on any points.  

 Carol 14 hope the infusion not causing too much pain.  I had bone pain for a few days after my first infusion.  

greeney / jolamine 

hope both well. Sounds like you’ve had a lovely summer break Greeney 

xxx