Hello

[Kizzy66]

My name is Jane.  I have grade 3 stage 4 breast cancer which has spread into my bones.

I found out in Sept 2014 so feel ok ish in my shoes now. I was initially told I only had around 18 months. However the hormone treatment I was started on was only affecting one of my breast tumours so I had a mastectomy with immediate DIEP reconstruction  in April 2015.

I am awaiting medical retirement as I am unable to do my job as a midwife now. I have 3 children. The youngest are at home with me aged 8 and 11. The eldest lives I dependently with his girlfriend.

Thank you for letting me join this group. X

Have a lovely day x

[Lainey66]

Hi Jane, thank you for being so brave and sharing your situation. I think you are amazing to do so. I have triple negative breast cancer. I had a bilateral mastectomy on the 5 Jan this year. When the tissue was analysed it was noted that the chemo had not shrunk the tumours and residual cells were found. I am.niw on a and C chemo and am facing radiotherapy and two CMF chemos in about 7 weeks the a&C has to be out of my system before radiotherapy can begin. That will be the end if my treatment as there is no medications fir triple negative. I just have to hope. I asked about regulations scans but this is not carried out automatically. I have to present with symptoms buy I'm going to fight for the scans alright. I had a baseline scan prior to this current round of chemo and luckily there was no spread. I'm just hopeful this chemo is clearing up any residual cancer cells. It's all a waiting game. You appear to amazingly strong, I have found this site to be truly helpful and supportive. I hope you do too and I hope there is something that can and is being done to help you xxx

 

[Kizzy66 in reply to Lainey66]

Thank you Lainey for your words. I am used to it now. Every day is different though. 

I have been told that they cannot cure my cancer but we are working on halting it spreading which so far we have. 

I haven't been offered chemo as it's terminal but had radiotherapy to my pelvis which has really helped with the pain I was in.

Wish you all the very best and hope to be able to help support you and others on here as best as I can.

Much love x

[Lainey66 in reply to Kizzy66]

I think you are remarkable and a shining example of bravery, generosity and love. I hope we here are every bit as much support to you. Thank you xxxx

[Kizzy66 in reply to Lainey66]

So glad you're going to fight for scans but it upsets me that any one of us have to fight for anything as we already have the biggest and most evil fight already.

How can they possibly reassure you that all your treatment has been successful unless they scan you. I was not experiencing any symptoms at all and my oncologist is amazed that my blood results have always been 'essentially within normal limits' which therefore shows that if he hadn't taken me so seriously I could be dead now as he wouldn't have ordered scans for me. I was initially given 18 months! !

Good luck x

[Kirmy in reply to Lainey66]

So terrified of this! I'm also TNBC and on my last round of FEC-T. The thought of going through something like salvage chemo makes my heart ache. I know it's a possibility. I guess that's why I'm so sober when talking about my TNBC because it is a total cow of a thing. 

I hope that the extra measures you take destroy any eventuality of spread and that despite the awful fear you face that you will walk away from this without metastatic spread. I hope we will get to toast our collective five years Cancer free!

Hugs...massive hugs

[wobblybee]

Love and best wishes to you both😊 Mine was grade 3 too.  I also have a progressive, degenerative neurological condition which didn't react well to chemo.  But, again it's something you have to accept, and cope.  I had a lumpectomy, chemo and radiotherapy but nothing can be done about my other condition.

Being shown understanding, and given support really helps😊xB

[Kizzy66 in reply to wobblybee]

Thinking of you x x

[Hidden]

Hello Jane

Yes thank you for sharing your journey. It makes facing these things a little less scary when you hear a real story and a face to put with it, you look like a lovely lady.

I was diagnosed last July aged 34 with grade 3 HER2 positive BC, chemo followed by mastectomy and radiotherapy and also herceptin injections and tamoxifen tablets.

Sending a hug and best wishes your way

Xx

[Kizzy66 in reply to Hidden]

Can you tell me about the herceptin please. I was also first diagnosed at age 34 yrs with a grade 1 tumour. I had a lumpectomy and complete lymph node clearance. Had radiotherapy and declined chemo.

After 10 years I thought great I have beat it. Only to find in year 14 that the nasty had returned.

The reason I am telling you all this is because I feel I became complacent and took my eye off the ball. I missed my 10 year mammogram. It was just after my mother died.

Had I looked after myself better at that time may have caught it early again this time around. But no. I was so busy working and coping with the death of mum and then 3 months later my marriage broke down that I ignored myself.

Be on your guard and always put yourself first, I guess is what I'm trying to say.

Maybe if I had my children's future wouldn't look so bleak now. Who knows? 

[Hidden in reply to Kizzy66]

Due to my tumour having been HER2 positive, which means the cancerous cells contained too much of a protein and my hormones were fuelling them to grow much quicker which made it an aggressive form, I was offered herceptin via injection which takes 5 mins in thigh, this coats the cancerous cells to block the communication from my hormones and also encourages my immune system to fight the cancerous cells. It is used in early stage BC like mine to prevent recurrence or in Mets it can slow spread and prolong life.

I had chemo to destroy any stray cells that may have escaped into my vascular system, an insurance policy if you like.

Xx

[Kizzy66 in reply to Hidden]

Thank you for that x

[Kizzy66 in reply to Kizzy66]

My cancer is HER2 negative but highly positive oestrogen and progesterone. 

I am on tamoxifen,denosumab (monthly injection) calcium and vitamin d tablets. I recently had surgery to remove my ovaries and tubes which means I no longer need Zoladex injections.

X

[C0306 in reply to Hidden]

I'm due to start my chemotherapy at the end of April. I have her2 positive breast cancer also.  I will have radiotherapy and herceptin aswell.

How did you get on with the chemotherapy.????

[Hidden in reply to C0306]

I had FEC T chemo, 3 FEC 3 T. After my first round I came home and just slept, had no appetite, felt slightly sick so took the anti sicknesses tablets they gave me to come home with. The next day I was actually quite perky, I had all the following week off work but then was back for 2 weeks and then it was the next round so I carried on like that. My taste buds suffered, I felt like I had a scalded tongue. Overall I didn't fair too bad after each chemo, the worst time I had was straight after the T chemo, it made my joints really painful, especially my pelvis and it woke me up a lot. Everyone is different, I got off lightly compared to others I've heard about. Make sure you drink plenty of water to flush it through your system. I finished end of November, had mastectomy 18th December and finished 15 rounds of radiotherapy a month ago. I'm half way through my herceptin injections, 9 more to go. Best wishes for your treatment xx

[C0306 in reply to Hidden]

Thank you cazlav.  Sounds like you have handled it all in your stride. The Unknown can be a little scary sometimes. I wish you all the best and how lovely to have the end in sight. 

All the best.

[Janny1306 in reply to Kizzy66]

Why did you decline chemo? it could give you more time and who knows what great breakthrough might be just around the corner?? Stay strong hun wishing you well xx

[Kizzy66 in reply to Janny1306]

Hi there. I did lots of research at the time and discussed at length with my oncologist who told me that the chances of cancer returning within 10 years if I were to have chemo and radio was only 4% difference if I had radiotherapy alone. I didn't feel it was significant enough to put my body through that and instead I managed to keep my immune system very well. Even this around my immune system is very good. I managed to stop smoking and my alcohol intake has really reduced. My stress levels are also reduced I think mainly due to stop working a highly demanding midwifery leader role although I really do miss providing care to pregnant women and delivering lots of beautiful babies x

Chemo now will be a last resort and I prefer to stay away from it for as long as I possibly can. This cancer will spread and claim my life prematurely so I intend to spend as much quality time as I have left being as well as possible to make happy memories for my children. Myyoungest is 9 today so I'm going to get up now and enjoy birthday breakfast with her and her brother.

Wishing all a lovely blessed day x

[Janny1306 in reply to Kizzy66]

You are an amazing strong woman bless you and your family ✊💞xxx

[Nicholjac]

Hi Jane

Just want to say hello, must be hard for you esp with medical knowledge, I know it's worse having that insight.I don't know how you have kept working up to now, esp in your job so stressful, but I understand how important your team and friends will have been to you and will be

Thanks for sharing, makes my little blips of what if seem insignificant  and a reminder to live in the moment

Hope we can be of support to you ,if only to listen and learn from you

[Kizzy66 in reply to Nicholjac]

Many thanks x much appreciated. Have a beautiful happy day x

[Hidden]

Hello Jane. What a lovely photo of you. Sounds like a tough experience you have had so far, like most of us nurses I imagine you have been tough on yourself too! 

I'm glad you are getting medically retired.

Good luck with your remaining treatment.

Big hugs

Emonty xx

[Kizzy66 in reply to Hidden]

Thank you. X

[Surviver]

Are you going to be okay  bug hugs xx

[Kizzy66 in reply to Surviver]

I am OK.  But I can't dress this up. My cancer is terminal so it's going to do its best to kill me but I'm a stubborn taurean which helps me fight this nasty in a daily basis. I used to detest my stubborn nature  but I now know that it's a positive in my current situation.  As it helps me tell cancer to buzz off. Just hope I can continue this attitude for a few more years x

[Mell]

Hi Jane thank you for sharing your story with us. I was diagnosed the day before my divorce came through last October. It had been a long and nasty fight with my ex so my adrenaline was up and this I'm sure helped me to fight the cancer - lumpectomy, 15 radio and now tamoxifen. I too am a midwife so I know it's not an easy profession but my friends at work got me through it and I will be eternally grateful to them. I'm now back at work on a phased return and finding it very tiring but I know it's early days. I wish you all the luck in the world and good health. Your adrenaline will get you through. I dip into this site most days and always feel better afterwards. Let us know how you are getting on. Stay strong xx

[Kizzy66 in reply to Mell]

Thank you Mell. So happy for you. My colleagues are amazing and look after me all the time. I don't know what I would do without them x x

[Kirmy]

I appreciate you being here. It is so good to know that you can get on living with this. The world doesn't just end. I love your grace and dignity and I'm sending you massive hugs you beautiful person. 

[Kizzy66 in reply to Kirmy]

That's really lovely of you. X right back at ya.x

I have had some real wobbles in the past 18 months since being diagnosed.

I am now resigned to the fact that I can't change what's happened so I smile and get on with it. Showing my kids that one never should give up hope x x

[Surviver]

Jane so sorry to hear  that  stay strong thinking of you big hugs xx

[blue_sky1]

Hi Jane. Thank you for sharing. I wish you all the strength and hope in the world. Don't give up. You are doing so well and could have many years ahead to finish bringing up your children. These prognoses are so often wrong. Wishing you tons of love and hugs. Xxxx