Hey Joyce....So relieved for you...this has been caught in the bud and can be dealt with. A friend of mine had a similar experience and she is fine. love and hugs Irenee xx
Okay, I have some news that I feel happy with. The PET scan I had was very detailed and covered me from the ear-line to my knees. I do have some small pin head cancers on my lung and also the one in the lymph node, but apart from that, I am cancer-free. I will be back on the chemo trail starting next week to get rid of the small pin heads on the lung. My Doctor is not worried about the lymph node for the time being.
I am ready for chemo again. I should add that I feel very confident that I am getting the best care and treatment.
One thing really stands out for me. I only saw my Consultant because I had a lump in my armpit. He was very sure it wasn't cancer but he said that he would organise an investigation for my sake and to ease my mind. I took my sister Jackie Robins into the room and we saw the lump which was probably .5" or 2cm in width. It was made up of hardened blood (and was not cancerous at all) and bless my soul was the shape of heart!!! But, do you know, hiding behind the 'heart' was the very tiny cancer in my lymph node... little MF... it was biopsied and shown as a cancer, hence I was sent for the PET scan... so, that innocent 'heart' shaped lump was showing the way to more nasty things. Business as usual at least now, I know what chemo looks like.... as before.... not pretty..... but do-able. Seeing the Oncologist tomorrow or Friday and then next week 'Port-o-cath- fitted under my skin and then let the chemo begin! I will keep you updated... please don't be sad for me, it really could have been a lot worse... Jxxx
Just wishing you all the best today. I will be thinking of you. Lots of strong hugs.
Thank you everyone, I didn't want to upset anyone here with my news, but at the same time, I knew that I would not get platitudes from you. I am trying to stay focused and not be a dribbling mess. I have had to comfort my children who are 13, 18, 30, 31 & 34, so I have had to stay as calm and level headed as possible. I keep repeating the words "It's business as usual" (until we find out what we are dealing with). I am scared of the PET scan as it takes so long 40 mins x 2, so will be taking a Diazepan 2mg to help me with that. I have also been taking one Zoplicone 3.75mg every night to help me sleep and not lie there thinking and thinking.... I am heartened by the positive stories I have heard, I am determined to kick this MF cancer up the butt once and for all. For me it's not just about "thinking positive" (I hate that term) but also about getting mad and getting even... grrrrr....today I feel like a tiger.... but tomorrow I may be a helpless kitten... fingers crossed and marching onwards and forwards... Thanks for the love.... Joyce xx
Dear Joyce...My heart goes out to you.....this could happen any time to anyone of us....it really is pants. Wishing you all the best and I will be thinking of you on Tuesday...love and hugs Irenee. xxxx
Hi Joyce, I'm so sorry to hear your news, it is devastating especially dealing with children as well. I will be thinking of you and sending all good wishes your way that all goes well and this can be dealt with. Rose, good luck with your surgery, it will be worth it in the end. Love and hugs to everyone Janxxx
Hi Joyce, I am in a group on twitter who have been through the same situation as you. The lady who is at the centre of the group is called Jo - (edited by moderator - please send a PM for twitter name) - she has just finished chemo as had lymph node involvement after been 5 years post breast cancer. She is doing really well.
I am so sorry to hear your news. It must be devistating. My thoughts are with you.
I feel so bad ladies, but I hate to tell you that I have a cancer in a lymph node. Having a PET scan on Monday and results Tuesday. I thought it was all over and life was getting back to normal, then had this brick in my face. So tough.. having to tell my 5 kids horrible news.... again... I am trying to stay focused... but gee whiz it's so tough. I don't know what they will find and what he will say on Tuesday... so girls, I know that you are all doing okay, which has delighted me to read... I may not have written much, but have always read posts with interests. We started this journey together and I wish you all the very, very best.... Joyce xx
Good Luck Morwenna...I know how you must be feeling....it is a big decision...I am sure all will be well..It sounds like you have a good team looking after you. xxx
Well, excited and terrified here: I am booked for Prophylactic right Mx and bilateral reconstruction (Muscle-sparing TRAM flaps) January 7!!
I have to have a new breast surgeon, as my original BS doesn't work at the same hospital where I'm having my surgery. It's a day-long operation with my Plastic surgeon as the main operator, and two other plastic surgeons to assist ... one for the morning and the other for the afternoon. I guess I'm feeling pretty overawed .... I'm taking a whole day's theatre time, plus four surgeons, and however many anesthetists and support staff for the day. It is covered by our health service, and I feel quite humbled at the though!
I DO hope it all goes right and I heal well and will be happy with the result. THere's an awful lot of effort going into this!
I see my hematologist next week for any last thoughts regarding my platelet production and coagulation issues, then I meet the new breast surgeon the following week. It rather feels like I'm on top of a steep ski hill and about to launch myself off!
I have just started trying to prearrange to be on short term disability pay as my surgeon is recommending three months off work, and I used all of my accumulated paid sick time having treatment last year!
My dear father, on his own now since Mum passed away last April, is badgering me to come and "convalesce" with him in England. I know he really wants to see me again. and I him, but I've told him I cannot commit, but can always book a flight last minute if the stars are in alignment! 🙂
I feel like this might be the recovery leg of my "journey". Friends have told me it is tough, but they haven't regretting taking this step which feels restorative rather than destructive.
Phew: Remember to breathe! Can I start wishing you all a wonderful Christmas if I don't speak to anyone before then!!!
Hugs to everybody xxxx
Hi Curley Chris... I could be having the same op as you sometime next year. I had to pester a bit to get things going and I am due to see my consultant soon. Hope everyone is ok. Hugs to all Irenee xx
Hi all, it is normal to feel knackered. The broken sleep is normal as well. My eyesight has been slightly affected by the treatment. So glasses for me now for reading and comp work. I have a 24 inch scar accross my chest. As mentioned before, no recon for me.
Sarah, good luck with your surgery. My colleague had the same op and it was very successful.
Hi to all Jan jems,
havent looked hear for a while.
I am waiting surgery early next year Rt Tram flap with reduction and lift to the left side.
Anyone had this?
I have my mammogram again this week think everything is ok but still nervous.
Hope all are well and taking care. I am back working fulltime which is good , feel as if I am getting some semblance of normality back. I am knackered most of the time but tell myself it's normal.
Glad you are keeping busy Jan and getting things sorted. I for one will make sure the water is turned off when we are next on holiday. I'm sure you will be welll pleased when it's all sorted out. Best of luck in Nov. for your appointment....you would have heard by now if things weren't o.k. I went dancing last night and it was so nice without a wig. One song we danced to was 'Enjoy yourself it's later than you think' lol. Good Advice. Hugs to all Irenee xx
Thank you Irenee. It all feels a bit surreal at the moment but I spent today putting some posters up and cheap rugs on the floor and now it feels a bit better at least. Online photo books are a great idea, I have been triple backing up all my digital photos in the last couple of weeks. Sadly some of the pre digital photos didn't make it, so I will be scanning those that did. If you are going on holiday - turn the water off first! At least it's been a big distraction as C-day anniversary approaches. Just waiting results of mammogram now, follow up appt at beginning of Nov but as I haven't heard anything, I figure that's good news.
Hope all is well with you all.
Oh Jan that must be awful for you...so sorry to hear about your house but you are so right BC does put everything in prospective...It will be nice for you though when it all gets sorted..a new start. I have been organising my photos and what has kept me really busy is making photobooks. You can do them on line and they really are worth doing. Sorry to hear about your mate Morwenna who has had a recurrence and hope all goes well on the reconstruction...please keep us informed. Love to all..Irenee
Thinking of you all especially with reconstruction and surgery happening now and hoping all goes well. It does seem strange to think that firstly we are nearly 2 years on and yet still major decisions to make. I'm really sorry to hear about your teammate Morwenna too.
I have just had my latest mammogram and waiting for follow on appointment but am hoping all will be well. I have just been organising my photos and they very definitely fall into pre and post BC!
On another note came back from 2 wk hols to find water pouring through house, ceilings falling down and so once we dry out, house will have to be basically rebuilt. Still living in it and kids think it's a big adventure although the novelty of topping and tailing in bed is starting to wear off (much furniture was destroyed). Everyone keeps telling me we're being very calm and philosophical about it all but in the end it is all just stuff and compared to the last two years and BC it really is nothing at all. So BC does put life in perspective and hey on a brighter note I'll have a new house by Christmas!!
Hi from Canada!
I think it sounds like many of us are in the same situation. I've seen a plastics surgeon last Spring, and he's agreed to prophylactic Mx and bilateral TRAM flap recon. Back in the summer I was originally told DEC 16 as a provisional date. Then I got a call to say they had a cancellation OCT 15 if I was interested? Er, Yes, I said. So they called back a few days later to tell me they couldn't coordinate all the medical staff they need for that date.
Apparently, for my surgery they need a Breast Surgeon/General surgeon (Because the PS is not allowed to actually perform the mastectomy!) and then TWO Plastics guys as it is a bilateral. The date had come up via a cancellation but she had been booked for a single recon.
-So, it will be a date in January, but don't worry, you are next on the list!
-What happened to December 16?
-Ah, we gave that date to another lady who had been waiting longer ...
So then last week they call again:
- We have a date, January 6!
- OK, that's fine .....
- But it is still reliant on being able to coordinate the three doctors .. I'll call you back to confirm, but if it doesn't work it will be a date in February!
So this surgery is beginning to look like a mirage, always on the horizon. I'm like you Irenee; Starting to think I should just book a mastectomy, which my BS had said she "can do any time", then they only have to get TWO surgeons lined up for recon, as three seems impossible!
Then I think, Hells Bells, that's another surgery, with another recovery time ..... why the hell should I?
I have also wondered if I could put up with just being flat, but symmetrical at least. I'm waiting for an MRI at present, as I'm not convinced that my lumpy scar isn't a recurrence, despite the ultrasound not showing anything suspicious. Most of my original tumour did not show up on imaging!!!
If I DO have something new growing, I would definitely shelve the idea of recon. ..... Not worth the bother. But I think I'd still like the other one off!
Hi Ladies....so nice to hear from you all. I think you have done the right thing Caroline and I would love to be breast free....I know I have been on about recon...but really I just want to get rid of this dangling breast that is so getting me down..just to get rid of that and I would be balanced. My surgeon keeps saying he is too busy at the moment Know what you mean about worrying about bc recurrence Sarah ...every so often I get a bit scared especially when I go for my 6 month check ups ..which like you Rhonda was last week...glad all was ok for you..I was ok too but I do worry about secondaries as I am TN. Any way hugs to all and keep truckin'. Irenee xxx
Hi Sarah, I had lobular - and read the resesrch on it coming back to the healthy breast. My decision was based on this and the chances of reoccurance. I had been thinking about it for 1 year - with on going decussions with my surgeon. He asked me again 10 minutes before the surgery - if I wanted to go ahead with it. I had already made my mind up. No recon.
Hi Lovely ladies, I hope you are all very well. I have bitten the bullet and had a left sided mastectomy and implant removal on the right side with no reconstruction. It was a decision I made after Herceptin finished this year. Op was last Tuesday 16th of September. I am now officially flat chested - which I not had since I was 10. Anyway, I am hoping this is the end of my BC journey!!!
The wheels are in motion for the reconstruction...feel better now that I have come to a decision....It is so true that it's a long road we are travelling and though we have all had different problems we are all united by the journey. That was a big decision to make Caroline..hope all goes well...Jan I am suffering from the heat and feel quite unwell this afternoon. Rhonda hope your problem gets sorted and I do have a little bit of tightening under the arm but nothing much. Best wishes to Curly Chris and Morwenna going to have same treatment as me. Hope you are well Sarah and all the other Jems. Irenee xx
Hi Ladies, Thinking of you all especially with so many big decisions to make. This is a much longer journey than I expect any of us anticipated at the outset. Good luck with the reconstruction etc and big hugs
ps anyone else struggling with hot flushes and the heat? Have you found anything that helped? would be really interested to know. In the scheme of things it's a minor worry.
Hi Ladies, great to hear how you are all doing. We have all been on a very long journey of discovery and healing.
I have decided to have a left sided mastectomy + getting my implant out. Im going boobless as from the 16th of September. Its a decision based on the cancer I had. I did a lot of soul searching and made the decision.
Good luck to you all and keep well.
Hi Jan/Morwenna....Got to get my head round reconstruction this week and sort out an appointment. I too am trying to lose a bit of weight....doing lots of exercises and dancing. Hope you are well and enjoying the summer. Best wishes to all Jems. Irenee xx
Hi Irenee glad your mammogram results were good, that is such a relief. Good luck with the reconstruction, this is such a long haul and you are right we do need to take care of ourselves. Hope you enjoyed your granddaughter at half term - as much as it was difficult at times, it was my girls that got me through. What do you say to your 3 year old when she is insisting "but I want you to do it Mummy!" Definitely recommend the Hay House summit. I was in hysterics watching the video last night and laughter is such good medicine!
ps hair coming back thick, dark and very curly still. I keep looking at photos before and after BC and I really am a different person!
Hi Jan, How's the facelift doing?...I am envious of that. Glad to hear you are saying 'no' and taking it more easy...we have to look after ourselves...we have been through enough. I haven't been on here for a while as I was waiting to hear about a mammogram and I have had our granddaughter for a week as it was half term. Well I finally did hear about the mammogram after a month and all is ok....So now the big decision...reconstruction or not. (I am fed up with the floppy boob) lol. Might give the Hay House World Summit a try. I did hear a talk onthe radio about it. Hope the weather soon improves.
Best wishes to all. Irenee xx
Hi Sarah, Irenee & Chris,
Thank you for your support. On the upside my second diagnosis means my skin is tightening, which is manageable at the moment and hopefully won't get any worse and will give me a free facelift to boot! There always has to be an upside.
Good luck with your reconstruction appointment Chris and well done for doing the race Sarah - that really is amazing. I was planning to do the BCC Blenheim walk but wasn't up to it this year, however am working towards it next year. I might just have to force myself to have a fundraising coffee morning instead - it will be so hard eating all that cake!
I am still struggling with the fatigue and not sure which health issue to blame it on, but I'm slowly learning to pace myself better and am finally starting to say"no!". That is so hard but I guess it's a lesson to learn.
if anyone is interested there is a Hay House World Summit coming up, which is an online event running for 10 days from end of May. You have to register but it's free to access some of the talks/conversations with Hay House authors. It was on for the first time last year and helped me get through my final round of chemo. Lots of inspirational people to listen to.
Big hugs to you all
You are amazing doing a 5K run my niece will also be running for Cancer research for the 2nd time this year.
I am walking more but don't think I am upto 5k yet.
I still have days when i feel completly drained but getting there.
Saw my surgeon and also have scar tissue that mkes the scar feel rather lumpy. Have been referred to a plastic surgeon for reconstruction and have an appointment on the 10th of July.
Hope you are feeling a bit better Jan sorry you have more to cope with.
Onwards and upwards for us all.
Keep up the singing and living.
Hi Jan and Sarah
Sorry ti hear of your diagnosis Jan....I can imagine how mixed up you feel, and I hope all goes well for you in the future. My hair has come back a different colour...I was a redhead and now it's dark brown. I am still waiting for results from my latest mammagram. I will visit your website Sarah and make a donation. I wish you all the best for your run but don't push yourself too much. Take care all Jems. hugs Irenee xx