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JUST DIAGNOSED AND AFRAID

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Re: JUST DIAGNOSED AND AFRAID

Wow really. I expected large scars stitches and lots of bad aging. Your story is really encouraging. Thankyou 

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Re: JUST DIAGNOSED AND AFRAID

Hi Tansy,  yes I had full mastectomy.. No recon.  Still remaining flat and happy with that.  Its not for everyone though and a very difficult decision to make.  I have to say my scar, although long, is very neat and fading quickly.  I didn't panic about looking at it,  after my op I immediately checked they had taken the right one and was surprised by the piece of tape over it.. Was expecting bandages padding etc.  No stitches, just glue and before I left hospital (6 hrs later!). The nurse gaved me a soft prosthetic to wear in a soft bra and off I went.  Now I have knitted knockers which are soft and light and I ding notice they are there.  

KIP

 

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Re: JUST DIAGNOSED AND AFRAID

Thankyou, that is very reassuring. I have a question. You had your breast made from your spare tyre, what a long OP, was it doubly uncomfortable getting over it? 

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Re: JUST DIAGNOSED AND AFRAID

Hello tansy 

So sorry you have had to join our club  i was diagnosed a year ago but it seems like a lifetime ago. I noticed you asked a few times about looking at be you mastectomy post surgery so I thought I might offer you something else to think about as I had the same fears. I needed a full mastectomy as it turned out I had multifocal cancer. That is to say I had 6 different tumours in one breast. I opted for a skin sparing mastectomy with diep (pronounced deep) reconstruction  my hospital does not offer this so I had to find out where it was available and ask to be referred there.  This meant I had an immediate reconstruction made from the small spare tyre I had been carrying for a while. The operation took 10.5 hours but when I woke up I still had a breast the same size and shape as the one I had before which was warm and felt exactly the same as it always had and the only scar is a small neat one where my nipple use to be. In a few months I am going to have a new nipple made by the same surgeon and a small adjustment where some of the new breast has moved slightly. So I never had that frightening moment of looking at the scar as when I woke up from the operation it looked great ( minus the nipple) and I am very happy with it. When I showed the breast cancer nurse at my local hospital. She actually said "wow. I had to look carefully to see which breast had had cancer". I know you are avoiding dr Google but it might be worth looking this up as everything happens so quickly when under cancer treatment that you often don't get much time to make decisions so it's better to be prepared over what options you would like to consider for yourself..

I will warn you thought that most surgeons do not take kindly to you asking to be referred elsewhere

Good luck on your journey and I wish you well. if you need to Google look for "diep reconstruction"

Gill

 

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Re: JUST DIAGNOSED AND AFRAID

Hi Kip, that is reassuring. Did you have a full mastectomy without reconstruction? 

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Re: JUST DIAGNOSED AND AFRAID

Hi Tansy,  glad all the support and our stories are helping.  It's a passage of rights. . I had so many lovely ladies who told me their stories when I was diagnosed and it helps to know others got through it doesn't it. Jane has pretty much told you everything I did too, keep up with the exercises to get movement back after surgery. And I was the same with chemo, ropey for a few days each cycle but you get through and I still managed to work and go out.  

Oh and just wanted to say, the op was only 2 hours long and I was home within 6 hours of going into hospital... not a 6 hour op.    I had the drain in for a few days, but it was no problem and the nurse came round to take it out, easy peasy.. didn't hurt at all.

Keep strong, you'll get there and once you have the plan in place you will feel much better.

Kip

x

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Re: JUST DIAGNOSED AND AFRAID

Thank you Jane. Today I saw my doctor but we still dont have a firm plan. By next week I have to make decisions,  but I am feeling calmer and understand my options a bit more. Options are quite confusing though lots of ifs and possible risks to think through. 

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Re: JUST DIAGNOSED AND AFRAID

Dear Tansy,

 

I am so glad I have been able to help you. I come on the site occasionally, and reading the posts from ladies like yourself brings it all back to me, how I felt and how far I have come. I am absolutely sure you will be just as strong as the rest of us have been. It is amazing, as soon as you get a treatment plan, and get into the treatment, you feel calmer as each day is closer to a cure.  I remember how inspired I felt when I read the stories of other ladies who had got through the treatment, which is why I wanted to share my story with you and wish you lots of luck. You will be fine. xxxx

Jane xx

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Re: JUST DIAGNOSED AND AFRAID

I missed this part Jane. Thankyou for telling me your story, it really has helped me. I hope I can be as strong as you. Xxx

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Re: JUST DIAGNOSED AND AFRAID

Jane this is the best news I have heard. One question though how did you cope looking at yourself? 

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Re: JUST DIAGNOSED AND AFRAID

Also, Tansy, I did all the recommended exercises after my mastectomy, and walked every day, and I needed painkillers only for a few days and I felt fine after two weeks, driving etc

Radiotherapy was fifteen sessions and I felt very few side effects. I went back to my work when I was halfway through radiotherapy and worked the mornings , having radiotherapy in the afternoon with no problems.

I then had herceptin injections every three weeks til June 2019 ( a year), and they didn't affect me either.

So really it was quite doable.

I would say, a day at a time. Also I can highly recommend a book- Tea and Chemo- by Jackie Buxton- lots of fab advice and very uplifting. 

Best wishes

Jane xx

 

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Re: JUST DIAGNOSED AND AFRAID

Hi Tansy,

I had treatment in a slightly different order to the usual, due to my type of cancer, but I will tell you how I got on.

Due to my tumour having a protein on it that stimulated it to grow, my treatment included having Herceptin and Perjeta that targets this type of tumour. I had six rounds of chemo before surgery. The first chemo was not great and I did end up in hospital, but they tweaked my medication, and it became a case of chemo, fine for three days, tired for the next few days then a week of feeling fine before my next chemo. It became easier each time, I found. Everyone is different. 

The chemo completely removed the tumour but I had to have a mastectomy as I had lots of DCIS ( pre cancer). I struggled with the thought of having it, but, like Kip says, it's a neat scar, and it's a sign of how strong we are! Having said that, I am opting to have a reconstruction, as I do want to have a breast back, but again everyone is different. The ladies on here helped me to come to terms with looking at the scar. I was very scared to look at first, but I did it by myself, steeled myself to take the dressing off and it really wasn't as bad as I feared. I comforted myself with thinking, it's temporary. To be honest though, my prosthesis is amazing, and I can wear pretty much what I want ( it even has a stuck on nipple!).

Best of luck with your treatment. Jane xxx

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Re: JUST DIAGNOSED AND AFRAID

Thank you sooo much for this post. And you have made it sound less horrendous, even just telling me about the 6 hours surgery. I still can't imagine looking ag it, ranchi feel loud z wimp and not a warrior at ggd moment, I need to talk to myself and get on with it.

Thank you so much for your words. 

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Re: JUST DIAGNOSED AND AFRAID

Hi Tansy,. Ive just read your post and it took me right back to my diagnosis in 2018.  Sjnce then ive had masectomy, no recon, chemo, node clearance and radiotherapy..and now coming to 2 years clear.  The beginning of this journey is just awful..processing the diagnosis the tests everything is overwhelming BUT youll get through it, just take is one step at a time.  Take any help you can, my hospital had lots of help groups and things , reflexology etc. All helpful.  Im on tamoxifen too, for 10 years..not without its side effects but im living life , working full time and feel great.  And as for looking at the masectomy afterwards..  i was soooo surprised just how neat and tidy it all looked..healed quickly jn fact in andout of hospital in about 6 hours... And now i dont really think about it..its my battle scar and shows just how toughh us warrior woman are.

Bug hug

Kip

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Re: JUST DIAGNOSED AND AFRAID

Hi Jane. I am so pleased you are well now and your story helps. How long did your recovery take? How did you manage to look at your mastectomy when it was done? I start my tablets on Wednesday this week, the same ones as you are on. 

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Re: JUST DIAGNOSED AND AFRAID

Hi Tansy,

I just wanted to echo what the other lovely ladies have said to you. You will get through this.

I completely empathise with your fear though. I was diagnosed on 1st June 2018, aged 50. I couldn't believe it- I felt so well, and I felt like my happy, carefree life had ended, and I would never feel peace again. But here I am, back at work, feeling so well, exercising again, socialising,  and actually, I feel like I have a second chance at life. 

I am due to have a delayed reconstruction in a couple of months, and other than tamoxifen for the next few years, that will be the treatment over. 

Although we all wish this hadn't happened to us, I can honestly say there have been positives, in that I realise how lucky I am to have so many people who love and care for me, and I don't 'sweat the small stuff' any more. 

I agree it's best not to google. The breast cancer nurses are phenomenal. A mine of information and so positive so ask them for advice.

I wish you the very best of luck with your treatment.

Jane xx

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Re: JUST DIAGNOSED AND AFRAID

 Aww I found myself the same back in Nov it’s horrid you feel like someone has pulled the rug from under your feet, unable to take it all in, unable to sleep due to fear.

I feel for you the best thing I did was join this group & found lovely ladies we are all going through the same & some have got to the finish line & their stories are now helping others (like me) and you too will get help & tips , advice, encouragement.

You will have a cancer nurse at the hospital ask for her advice & support sometimes after a consultant appointment I sit with her I find this so helpful it’s explained easier, like many of us we go into see the consultant & don’t take it all in.

I have sat & sobbed a few times it’s hard to be brave.

Don't go on google I did & all it does is scare you.

try a few meditation apps & ask for help on here, also the nurses you can phone.

Some days are stronger than others trust me I was Mrs meltdown at first remember it’s okay to cry your processing this awful bombshell.

You will find your strength & powers & think right let’s do what’s got to be done I’ve got this! 💪🙏

Take one day at a time & breathe, your not alone.

 Wishing you all the best on this journey, I haven’t finished mine yet but I know I’m gonna reach the finish line just as you will.

 

Remember be kind to you big hugs 🤗 

Nicky Xxx

 

 

 

 

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Re: JUST DIAGNOSED AND AFRAID

Thank you Jan for your words and support. I am not going to use Dr Googke at all. And I know I have to be braver. Thank goodness for this support group.

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Re: JUST DIAGNOSED AND AFRAID

Hi. Just speaking to you all on here is helping me a bit. I am every day facing the diagnosis more. Knowing people such as yourself have been here and felt/feel as afraid, but are moving forward is really helpful. I have never had to face something like this and the shock was unbelievable, as you know.

Thankyou for you all just being here.

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Re: JUST DIAGNOSED AND AFRAID

Hi Tansy

 

I can back up Kathryn’s comments. Like you, I couldn’t get my head round feeling perfectly fine and then being told actually I had breast cancer. The uncertainty of everything is a huge shock. Suddenly your sense of safety is whipped away and you feel completely alone - no one can understand how you’re feeling. Control is slipping away. It IS scary but nothing like as scary as we fear it will be. The problem is, we’re surrounded by negative images of cancer and we still equate cancer with a death sentence when the prognosis is getting better every year as treatments improve. The other problem is that everyone reacts differently to the different treatments and we obsess over losing our hair or being sick when these things actually may not happen (and in some cases, can be avoided). A lot of people don’t need chemotherapy. Some sail through it, others are wiped out (I was). Radiotherapy sounds horrendous but again, some sail through unaffected (I did) and others don’t. You just don’t know so don’t panic about the unknowns till you have to?

 

The next few weeks will take a huge toll on you as you get a clearer picture of your specific diagnosis and treatment programme. Take a trusted friend or partner with you to appointments - they can take in information you may hear and forget and can ask questions you want asked. My friend even took notes! Be prepared for interminable delays (only short ones but they feel interminable) and spend as much time as you can looking after your emotional health. Everyone is different but mindfulness, meditation, relaxation, hypnotherapy etc can all work. My lifesaver was Progressive Hypnosis’ Manifest Healing on YouTube. I would just plug myself in and drift off several times a day. Most important, do NOT google anything. It usually makes things even more scary - there are knowledgeable nurses here who can answer your questions (number is above) and you will be assigned a breastcare nurse who can answer any questions way better than Dr Google.

 

I wish you all the best for what lies ahead and hope it’s simple for you. Even if it isn’t, there are thousands of us here to bear witness to the fact that we get through it. We’re not particularly brave or strong - we just find our own ways of getting through to the other side, as you will. Take care of yourself,

 

Jan x

 

 

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Re: JUST DIAGNOSED AND AFRAID

Hi there I just wanted to send you a virtual hug. You are understandably scared but the breast care teams are amazingly supportive. I am not sure what your diagnosis is and what your options will be but I just wanted to tell you how frightened I was when first diagnosed.  I felt lost and had anxiety like I have never known BUT fast forward to today and everything is mostly all behind me.  The initial shock is awful but you will get through this.  If I can help anymore please let me know.  Xx

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JUST DIAGNOSED AND AFRAID

I have just been told I have it, and it is like my life is imploding. I cant get my head around it and feel like I am two different people. I am the me, and I feel fine not I'll, and then there is the she....who has cancer. 

Next week I have to go and get my treatment organised but I am so afraid.