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11 years on - 2nd diagnosis

35 REPLIES 35
carolec
Member

Re: 11 years on - 2nd diagnosis

 

Rattles
Member

Re: 11 years on - 2nd diagnosis

Hi Carole,

I'm glad to hear that you have a plan. We all know that waiting is dreadfully hard and I'm glad you've managed to get those fears under control. Its still sounds like certain bits of information are needed to determine what happens next. I just wanted to reassure you that chemo is do-able - if you do need it and it passes quickly. Hoping you can plan things to take your mind off the surgery and will be thinking of you on the 5th June.

Take care, Rattles xxx

carolec
Member

Re: 11 years on - 2nd diagnosis

Hi Gill/Rattles
I have a date for my op - next Wednesday 5 June but first have to have sentinel node biopsy and wire localisation. I was hoping op was going to be this week but they couldn't organise it - spent many days thinking if they leave it another week it might spread, but have calmed down a bit now. Tests so far have been good - one lump and no swelling of lymph nodes but will need rads and possibly chemo which I am dreading as never had first time. I didn't realise the lump could be oestrogen positive and Her2 - I didn't have any of this before as all DCIS - I know it's oesstrogen positive and waiting on her2 results. Still have good days and bad days which is only to be expected and went into work today but left early - they have been good and basically said I can come in when I want and go when I want. I wonder how long I will need off work and whether you worked whilst having rads and chemo - suppose I just take it one step at a time - thinking too far ahead as usual! Xx

carolec
Member

Re: 11 years on - 2nd diagnosis

Hi Gill and Rattles
Thanks for your comments - I'm glad I found this thread as it's good to know that others have gone through this and come out the other side. I'm trying to stay as positive as I can - roll on Friday xx

gmc
Member

Re: 11 years on - 2nd diagnosis

Good news Carole. Good luck for Friday and the outcome. Hopefully once the op is done you'll be able to recuperate in some nice warm weather.
Everything OK with you Rattles and the others on this thread?
All the best, Gill x
Rattles
Member

Re: 11 years on - 2nd diagnosis

Hi Carole, I'm so pleased the bone scan was clear - I know how fast you move to the next challenge, but its great news. Try and take good care, Rattles x

carolec
Member

Re: 11 years on - 2nd diagnosis

Hi Rattles
Yeh ok I suppose - still shell shocked - was over the moon when received news that bone scan was clear and so happy. Now I'm on a bit of a downer waiting for MRI results etc as this will determine whether lumpectomy (fingers crossed) or another mastectomy and will see my consultant on Friday. They are hoping to do the op next Tuesday or Wednesday. I'd forgotten what a roller coaster ride of emotions you go through after diagnosis. I still can't quite believe this is happening to me again, but am trying to stay as positive as I can. Hope you are ok.

Rattles
Member

Re: 11 years on - 2nd diagnosis

How are you Carole? Rattles, x

carolec
Member

Re: 11 years on - 2nd diagnosis

Thank you Gill, will do x

gmc
Member

Re: 11 years on - 2nd diagnosis

Hi again, Glad you're getting some help - I resorted to it all and it was really good- especially being able to sleep again and not lie awake clock watching. Good luck for the scan and keep in touch. Gill xx
carolec
Member

Re: 11 years on - 2nd diagnosis

Thanks Gill - I got the sleeping pills today and have found out that there's counselling and relaxation classes at Mount Vernon - a local hospital to me - I'm just dreading the bone scan results - worrying about every ache and pain, but go for bone scan on Thursday and hopefully results by next Monday, many thanks Carole

gmc
Member

Re: 11 years on - 2nd diagnosis

Hi Carole. I do think second time around is when you need to accept any help going - counselling, sleeping pills, support groups.It's a worrying time for you and it's good to talk your worries through with someone not emotionally involved I found. Thinking of you, Gill x
carolec
Member

Re: 11 years on - 2nd diagnosis

Thank you I did ring them yesterday before my diagnosis and had a very tearful telephone conversation with one of your support team.

Janet_BCC
Member

Re: 11 years on - 2nd diagnosis

Hi carolec

 

Welcome to the forum.  I hope fellow members will soon notice your post and come along with some support.

 

You might find it helpful to give our helpline a call.  They will be able to offer you practical information and emotional support.  They will be oen at 9.00am (9-5 on weekdays and 10-2 on Saturdays).  The number is 0808 800 6000

 

Very best wishes

 

Janet

BCC Moderator

 

carolec
Member

Re: 11 years on - 2nd diagnosis

Hi
I have been reading this thread waiting for my diagnosis - not sure if anyone is still out there as last post was over a month ago. I was told yesterday evening that a lump I found just under the nipple in my good breast is invasive cancer with some DCIS and I'm trying to come to terms with this new disease. I had DCIS 13 years ago in right breast with mastectomy and then five years ago diep flap as implant ruptured - so some tough ops and thought that was it. I haven't slept since last Friday when my consultant confirmed the lump was suspicious and all thoughts are going through my head - every pain I Think is it secondary cancer. My two girls are about to take their GCSEs and A levels and I have to be strong for them but don't know what to do. Can anyone give me some encouraging thoughts or advice - maybe I should talk to someone professional.

TeeCass
Member

Re: 11 years on - 2nd diagnosis

Thank u !
All clear! It's a fibroadenoma. I've lost half a stone with worry.
Just wondering whether to opt for a masectomy as a precaution now. Will do watever I can to make sure it doesn't come back!!
Good luck everyone and thank u so much for ur support xxx

Salsasylvi
Member

Re: 11 years on - 2nd diagnosis

Hi

I too -after 9 years, (with invasive second stage cancer -mastectomy/radiation / chemo and tamoxifen) -have been diagnosed with invasive second stage cancer in other breast. I understand your shock although this time I feel angry.

What was your new diagnosis? ductal lobular inasive/non invasive & stage?

Do be thankful gmc that you don't have secondaries and take up free counselling on offer.

Good luck

Sylvia

gmc
Member

Re: 11 years on - 2nd diagnosis

Hi Teecass, I am sending a virtual hug and hoping you hear something positive asap. You have all my sympathies as I know only too well just how worried you must be. If only there was a way they could fast track results for former BC patients ! All the best and with a bit of luck the next thing we'll hear from you will be you saying "it's nothing to worry about ". XXX
Diana
Member

Re: 11 years on - 2nd diagnosis

Hi Teecass, I know the feeling, it is scary, stressful and we feel so helpless. I remember it too well.... The sleepless nights, the worries, the anxiety. But as time goes by, you would gain strength and able to cope in this difficult situation. Once the biopsy is done and the result is out then you know for sure what you are dealing with and what treatment you will be getting. I hope it would not be too long. Praying for your recovery. Xxx

TeeCass
Member

Re: 11 years on - 2nd diagnosis

Hi . I've had an Ester weekend from hell as on thurs during ultra sound he found a 4mm lump 2 cm from my original lumpectomy scar . My mind has gone into overdrive and I've convinced myself it's spread!! Scared to death of masectomy and more chemo altho that seems the better option at the mo! Stil more days of agony in wait but will b on to the nurses first thing in the morning. Will welcome any comments at all xx thank u

elmers
Member

Re: 11 years on - 2nd diagnosis

Thanks so much Gill. Chemo starts tomorrow followed by herceptin. Yes, brilliant support from family. I feel more scared this time round tho. Take care.
gmc
Member

Re: 11 years on - 2nd diagnosis

Hallo Ladies

This second diagnosis is hard isn't it Elmers. I don't think I've coped with it as well as I did the first time round but I am seeing a councellor and I think it helps a lot. I didn't need chemo on the first occasion but had it this time. I sympathise with you so much knowing now what you'll have to go through. But you did it once and can do it again because as you say we have no choice.I really hope you have masses of support at home with friends and family.

 

Hope evereyone is doing as well as possible and enjoying this bout of spring like weather - even if it is very cold,

Best wishes, Gill

Lucy_BCC
Member

Re: 11 years on - 2nd diagnosis

Hi Elmers and welcome to the BCC forums where I am sure you will find support from your fellow users, please also feel free to call our helpliners to talk any concerns or queries over on 0808 800 6000, lines are open 9-5 weekdays and 10-2 Saturdays

Here's a link to the treatements area of the site where you will find information and further support ideas which I hope you will find helpful:

https://www.breastcancercare.org.uk/treatment

Take care
Lucy BCC

elmers
Member

Re: 11 years on - 2nd diagnosis

Hello to you all - Hope that you are all having a good day today. Like you I am on my second time round First was 7 years ago when I was 61 - had chemo then surgery (lumpectomy) followed by radio. Didn't require any meds after that as it was triple negative. Then Dec 2014 same breast I got a new primary The waiting over Christmas and N/Year was dire . I had a masectomy and lymph node removal on 6 Feb  - the blue dye injection hadn't work so my surgeon took everything he could find  - bless him.Have all the horrible side effects that you have all been through but luckily although its ER Positive it hadn't spread to the lymphs. The news was such a relief but I still feel numb - this can't be happening to me again. Heart scan on Friday before starting chemo and herceptin asap afterthat. Having been through the chemo before I really do not feel at all happy about doing it and the herceptin quite worries me, but what choice do we have (I have a fear of needles - how silly is that) People keeping asking if I am going to have reconstruction - they really don't get it do they I have said I will probably have another masectomy once the treatment is over -  they look at me as if I'm mad.... There that's todays moan!! Actually the sun is shining , hubby has gone to do the shopping and I have a good book waiting!. Good luck everyone. Keep strong.

Diana
Member

Re: 11 years on - 2nd diagnosis

Hi Gill, if you have sweet tooth..... You can always swap sugar with Xylitol or Stevia, it is safer. xylitol taste like sugar and you can buy it from Amazon. tesco sells dark chocolate sweetened with Stevia. 😃 Hope that helps. Sugar fuel the cancer cells. it is hard at the beginning but now I'm fine without sugar.

gmc
Member

Re: 11 years on - 2nd diagnosis

Hi Misspiggy

Good to hear from you and hope your eating regime is going well. Not sure how well I could stick to the no sugar part as have a very sweet tooth! This is a tough old time isn't it - coping twice with the same problem, treatment etc and I'm finding it very hard to stay positive for the future. Outwardly, to family and friends, I am able to make them believe I am coping really well, but inwardly it's a different story.

Will get through this black cloud though - it's a case of having to!

Onwards and upwards,

Take care and best of luck, Gill

Diana
Member

Re: 11 years on - 2nd diagnosis

I fully understand how you feel. It is hard to accept the recurrence or the new primary. I thought that I had moved on from cancer and just got on with my life and suddenly the horrible thing appeared again! I must admit that it was difficult to hold back my tears for the first 5 months after the diagnosis, I was just very sad but not angry. Somehow after 5 months I gained inner strength and able to cope with the idea. I'm not alone. I'm in acceptance and just do my best to get on with the treatment and going thru this life changing experience. I take note from other survivors' tips and advice and now am embracing new healthy eating habit (organic, no sugar, juicing, healthy supplements, etc), I was not being unhealthy before, but not being organic enough. It is tough, but I'm feeling very grateful each day because there are a lot of people in the world suffering much more, one way or another, cancer or not. I hope as time goes by you feel stronger and able to sail thru this rough time. Xxx

gmc
Member

Re: 11 years on - 2nd diagnosis

Hi Forus5

Good to hear from you and thanks for your good wishes. I have completed my chemo and am due to have surgery next Tuesday. Having a few problems with the side effects of chemo as do most people it seems. How are you getting on and what stage of treatment are you at ?

Best wishes, Gill

forus5
Member

Re: 11 years on - 2nd diagnosis

Your comments could have been written by me as they are identical. First time with cancer I reacted so well but this time I am like you. I just wish you so much luck and hope you are soon 'yourself' again.
meggy
Member

Re: 11 years on - 2nd diagnosis

Hi Gill

Sorry about your seroma - I had such a bad one after my anc last year, it went on and on ....but then it went! 500mls was my top score!! You are quite right about left in limbo/life changing land. I have been trying to find a part-time job recently - that was me finally facing up to the idea that I could get back to work - now I don't know whether its worth it again. Oh well. Hope the heart scan goes OK.

all the best

Maggy

gmc
Member

Re: 11 years on - 2nd diagnosis

Hi Maggy

 

What a nightmare for you and I fully understand how hard it is to put on an act /  front for the family. I think at times we all deserve an oscar for our performances! My poor husband bears the brunt of my true feelings, rants and rages, and I can only hope he's strong enough to cope with all this trauma again !!

I don't think anyone who hasn't gone through the process of waiting for potentially life changing results can possibly know what we go through . Sick with worry one minute, head in the sand the next, trying to act positive with friends and work colleagues - counting down the "normal" days till the results day!

I wish you all the very best for those results. Do let me know how you get on. I'm to have a heart scan next Tuesday to check it can cope with Chemo. Also need to get a Seroma under my arm drained again (3rd time) before starting treatment !

Happy Days!

Best wishes, Gill

 

meggy
Member

Re: 11 years on - 2nd diagnosis

Hello

I think I agree with Orange Cat that this group of threads is a funny one for those of us with local/regional recurrence or new primary. It took me some time to find it! It should be something like 'I am diagnosed again for the second, third or more time'! I had a regional recurrence diagnosed in Nov 2012, 3 years after a primary diagnosis in 2009, and I am now being investigated for another (maybe local) recurrence 15 months on from the last one. There is no better way of describing it all as a roller coaster of shock, convalescence, adjustment and acceptance, followed by a gradual return of hope and optimism, only to be whacked by another shock etc. - with steadily accummulating side effects from various treatments. To keep steadfast and functioning for my young-ish family often seems too much.....Maybe I'm just feeling jaundiced - I'm coming to the end of two weeks of 'waiting for results' hell - we all know how much that sucks. When you don't know what's going on your mind plays havoc! Anyway, the sun's shining and the sky is blue - have a nice day everybody!

maggy

gmc
Member

Re: 11 years on - 2nd diagnosis

Hi Kat

 

Thanks so much for your response.It's good to hear from someone who understands how I am feeling.

 

 Yes, I have had my results - 2 days ago. Unfortunately it seems I will need further surgery but first I am to have a course of Chemo ,FEC T, as it had spread into 5 lymph nodes and then he will remove more breast to take out all the remaining tumour. At the same time he suggested a reduction in the other breast that was affected 11 years ago so that I have a matching pair! I should end up with the breasts of a 15 year old instead of my 60 year old ones - shame about the rest of the body !This to be followed by radiotherapy. Not sure when the chemo will start as having "drainage " problems but they hope it will be shortly after Easter. Having escaped that first time round I am very scared at the prospect. Still feeling desparately emotional but managed to hold back the tears today whilst being drained again -until I got home and then I howled ! 

How are you feeling now? It must have been such a shock to have it back on the same side as well as a different type of tumour. What rotten luck. Glad to hear you've finished the treatment and thanks again.

Best Wishes Gill X

orangecat
Member

Re: 11 years on - 2nd diagnosis

Hi gmc,

Us recurrence ladies do seem to get lost on the forum. Not sure "I am recently diagnosed" is the best place for us?? I do occasionally have a look, which is how I found you.

You must have your results by now. How are they?? Do you have a plan??

I had my second diagnosis last year on the same side as my mastectomy but a different type of tumor. i have finished chemo and rads and am now on herceptin. I was coming up to 5 years anniversary. I felt terribly let down by my body, and it is hard to voice this when all around you (even on here) are full of fight and positive thoughts. But my monthly thread ladies have been marvellous and it is comforting that there are a few of us going again. Kat x

Jo_BCC
Member

Re: 11 years on - 2nd diagnosis

Hi GMC

 

Welcome to the BCC discussion forums.  I'm sorry to hear of your second diagnosis and how you are feeling right now.  Please do give our helpline team a ring, they're here to support you both emotionally and practically.  Calls are free 0808 800 6000 lines open weekdays 9-5 and Saturdays 10-2.

 

Take care,

Jo, Moderator

gmc
Member

11 years on - 2nd diagnosis

Can anyone relate to my situation? 11 years ago I had a lumpectomy in my left breast, full auxiliary clearance, 5 weeks of radiotherapy and 5 years on Tamoxifen. After 11 years I have since found a lump in my right breast which has now been removed ( 19th March 14 ) - again with full axillary clearance also as sentinal lode couldn't be located successfully. I have really struggled with this second diagnosis and am finding it desperately hard to feel positive - I go back for results and treatment plan in just over a week. I had forgotten the excruciating pain following the axillary clearance and spend a lot of time either in tears or feeling angry. I don't recall feeling this negative first time around !