The Roller Coaster of Uncertainty

Diagnosed with breast cancer Recently diagnosed with breast cancer
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Hello all, I’ve just signed up here today and thought I’d jump in.

I received my diagnosis on 15th Feb, following a routine mammogram on 24th Jan. Although, I have support, so far I’m finding this a lonely and scary road. So, I’m just sharing my story so far…

I feel like like I’ve been on a terrifying roller coaster, ever since I received the call-back letter after my mammogram.

First the scan and biopsy, where I was told that the lump was small 1.5cm and if cancerous had been caught early.

Then, the first appointment with the hospital surgeon. Where the cancer diagnosis was confirmed and a provisional lumpectomy surgery date was offered.

Following the MDT, an MRI was ordered.

The MRI revealed that the lump was larger than first thought and also that the area affected is much greater as there are wider spread pre-cancerous cells.

A lumpectomy is no longer possible and I’ll need a mastectomy on the left side.

The MRI also found an area of concern in my right breast. After more biopsies and scans, this was found to be invasive lobular cancer. The left breast is invasive ductal.

I am now sceduled to have surgery on 16th April. 2mths after diagnosis. It’ll be a mastectomy on the left side and lumpectomy on the right. With sentinel node removal on both sides.

I have also been offered genetic testing, due to having bilateral breast cancer. If that is positive, then a right side mastectomy is recommended.

It is a lot to take in.

I started the year as a healthy 58yr old woman (I thought) excited about life and the future. This is where I now find myself.

I know this is a long post. I just needed to share. I thank you, if you got to the end. Even if you didn’t, I still thank you all for being here.

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I’ve just posted this evening as it’s all finally real and I need support.

I’m now unable to sleep and I have nothing to offer you regarding advice but I’m here and understand x

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Thank you Donna, you’re appreciated. Sleep is elusive for me too. I hope you get some

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Dear Shaka,

Welcome to the forum, the club you didn’t want to join, however we have all been there and now we are here to listen and support you on your journey.

Firstly, I would say take one day at a time, have a notebook and pen nearby, making notes throughout the day as you go along, as there is so much to take in at the moment.

Now you have your plan in place together with your breast cancer nurse, hopefully you will have the support you need at the hospital.

Wishing you health and happiness going forward with your surgery and treatment, please keep us posted how you’re getting on. Please take all the help offered to you from family and friends (that cup of tea with a special friend goes a long way).

With the biggest hugs Tili :pray::rainbow::pray::rainbow:

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Dear Donna

Thinking of you wishing you well, health and happiness going forward.

One day at a time, much love Tili :pray::rainbow::pray::rainbow:

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Dear Shaka
Sorry that you find yourself here and that after the initial diagnosis they have found more disease. Like many others on here I can understand the rollercoaster of emotions.
I was called back after a routine mammogram in July 23, After additional screening and biopsies it turned out to be a fibroadenoma. However, the more intense screening revealed another area that they wanted to investigate. It turned out to be what they estimated to be a 9mm idc. This was later amended to 17mm.
To cut a long story short, my first lumpectomy and sentinel node biopsy showed 49mm of DCIS and LCIS in addition to the idc and no clear margins, but fortunately the 9 lymph nodes removed were all clear. My second excision increased the size to 59mm with invasive mixed with non invasive and again margins not clear.
I am having a single mastectomy on 15th April so will be one day ahead of you.
The lovely ladies on here have really helped me on my journey. We’re all here to support one another on this lonely journey. The nurses on the helpline are lovely too and have helped me to get my head around what I am going through and have given me questions to ask my team.
Take one day at a time, distract yourself as much as possible and reach out on here when you have questions, need support or just need to offload. We’re here for you.
Wishing you well with your surgery and sending a virtual hug. x

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Hi Tilly

Thank you so much for your kind words. It really helps to hear from others.

I am indeed striving to take things one day at a time. I am mostly managing it now. I have cut right back on doom scrolling and I’m now trying to deal with the facts, in the moment.

Thank you once again.

I will keep in touch✌🏿

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Hi Holly

Thank you so much for replying to my lengthy post and for sharing some of your experience.

It seems that this is a world where things are constantly shifting and changing.

I wish you a safe and successful surgery. I hope you don’t mind me asking… Are you having immediate reconstruction?

I am having delayed reconstruction.

Thank you for your well wishes.

All my best, S

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Thank you Shaka.

Reconstruction is unlikely to be successful for me for several reasons so I will be flat. I was already undecided whether it was right for me so it was nice in the end to have the decision made for me.

Surgery is beginning to feel very real now. Not long before it will all be over and we’ll be cancer free. Hope all goes well with your surgery. x

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Ahhh, I see, thank you for sharing. Indeed the goal is definitely to be cancer free! Such huge life change eh…

Hope to check back in with you following surgery.

Be well, Peace

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Dear Shaka,
as others have said, welcome tot he club none of us ever thought we’d be a member of! It seems that with improved screening, many more unsuspected cancers are found much earlier than would have been, so in one way we are lucky that these early types have been found and treatment can start as soon as the diagnosis has been made with subsequent much better outcomes. It makes no difference to the shock and fear we all feel-why me-etc. Any time you need to rant, or query, or just need a virtual hug, we’ll all be here for you. Don’t bottle things up, share with your friends, and family, encourage others to have their mammograms, you’ll feel more positive all round. xx

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Hi Shaka and everyone else… just replying as I now have a date for right side mastectomy and full node removal on the 18th April so similar timescale to others. That gives me a little bit of comfort.

Had an awful weekend… was so pleased to have clear ct results on Friday that I thought I might be more upbeat over the weekend but instead I’ve been miserable. Tried going for a nice walk as a family just now and all I could do is snap and argue with everyone. I’m also worried about bumping into anyone I know outside my inner circle… it’s hard keeping up this pretence. Also angry at everyone, especially anyone obese … I was a fit, healthy, v active 51 year old vegetarian… all so bloody unfair… sorry, ranting and crying :cry:

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Hi Tappin, thank you so much for responding to my post.

Yes, indeed we are fortunate to have the benefit of free screening in this land. As you’ve said this does not take away the terror felt upon receiving this dreadful diagnosis.

I’m striving to hold onto my mantra. One day at a time. One appointment at a time. One treatment at a time. I’ve found this helps prevent me spiralling into terrible places.

Thanks again for your support.

Peace and healing to you. S

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Hi Donna, I’m sorry to hear that you’ve had a difficult weekend. I hope that you are being kind to yourself, your feelings sound pretty normal under the circumstances. This is all such a lot to process.

It’s one thing to discover we have a serious illness and yet another to realise the necessary treatment is life altering. I actually wish I felt angry, as I find that I feel numb a lot of the time.

I’m actually dreading the week ahead, as I’ve only stopped work on Friday. Work has been something else to focus on these past 2mths. I’ll now have 8 ‘free’ days before my surgery date.

I hope that you’re finding it helpful to express yourself here. I’m finding it feels like a safe and nurturing place.

Take good care of you and keep in touch. Peace, S

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Donna, what a lovely name! Takes me back to my teenage years and Ritchie Valens!!
I too kept my diagnosis secret to start with- I felt if I told anyone they’d say it was my fault for taking HRT for 30+years! (I was 76 at diagnosis so then went through the menopause because I had to stop the HRT-BANG!) Then, I did tell my sisters, and eventually my friends, who all were very supportive, and I have used my experience to encourage my women friends to go for their elective mammos. Because mine was very early, only showing as white dots, after the initial shock I was able to accept that I was just unlucky, and that if I hadn’t had the mammogram I’d never have known about it and it could have got a lot worse.
I know what you mean about people who have NOT looked after themselves, it does seem unfair, but I’ve been told we are not given anything with which we can’t cope. We are tougher than we sometimes think! Many on this forum have been through the wringer more than once, and still manage to rebound and carry on. I have decided that my quality of life is more important to me than longevity, as I am now 79, so have stopped taking the Exemestane, after having Letrozole which gave me awful side effects. The Exemestane seems to be much better with fewer issues. Good luck with your surgery, make sure you do your exercises, and look forward to the summer-I hope we DO have one as I’ve got my family arriving from USA and Aus in May so I’m madly cooking at the moment!

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Hi Shaka,

I’m so sorry to hear this happened to you too. Unfortunately, I have almost the exact same story! Abnormal mammogram mid January with Ultrasound guided biopsy on right breast in February. Was told that I have two lump, stage zero and stage one with a recommendation for a lump ectomy and radiation. Before making any surgery plans, my doctor ordered an MRI to make sure that there were no additional surprises. The MRI showed a small third lump in my right breast, and some areas of concern in the left breast, that were not seen on the mammogram. I then had a diagnostic mammogram with an ultrasound on the left breast, but it still didn’t show anything, so I had to then have MRI guided biopsies on both breasts; results were also cancerous. The plan now is for a double mastectomy…still waiting for my surgery date.

It’s still so surreal, and I completely understand what you’re feeling and going through. I just turned 53 in February. I do find that reading all of these stories are helpful…knowing that I’m not alone and others have successfully gone through this and have been healthy for years afterwards. I’ve also been to a breast cancer support group at my hospital, which was also comforting to hear of their journeys, some of whom had more advanced stages, and they are doing very well.

Please reach out if you need anyone to talk to. I know that everyone on these sites and in these types of forums are very supportive and understanding. We are like a sisterhood in here…our own little club that noone really wants to be in (LOL), but here we are and we’ll get through this!

Stay positive! Sending you a hug and well wishes.

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Hi Jaysmom71

Thank you so much for reading and replying to my post.

I’m so sorry to hear that you’re also going through this. Your story is uncannily similar to mine!

It does feel surreal, to go from having a ‘normal’ life to ‘this’. So much change, so much to take in.

I felt a strange relief when I got my surgery date. Even though I’m so scared. I find it really difficult to imagine the reality of a mastectomy. This is unlike any other challenge I’ve ever faced.

I too find the support in this forum invaluable. There is indeed a special sisterhood, a support that only those who ‘know’ can offer.

I hope that you receive your surgery date soon and are able to progress with your necessary treatment.

Thank you once again. I’ll keep in touch.

Peace and healing, Shaka

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@shaka Hi :wave: I completely understand it is like a roller coaster. I got my call back letter in October 2022. Had three surgeries the last one resulting in a masectomy. I was 62 years old also living my best life. Life will change but coming on this forum will make you feel your not alone. Always bear in mind that you do have a purpose and its completely normal the way you are feeling right now. Sending you prayers and hugs :people_hugging:

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Hi Talawah, thank you so much for responding to my post and sharing some of your story.

It feels good to hear of those on the other side of treatment. It kind of helps me think about life after.

You are appreciated.

Peace and health to you. Shaka

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I’ve just joined the forum and your experience really resonates with me.
I really hope you are feeling a bit calmer and more in control as your surgery date approaches.
Like most people it was a total shock. I was loving turning 50 , fit, healthy and planning lots of fun adventures.
Then WHAM! find a lump, told need a left side lumpectomy, then they find another different cancer in same breast so I’m scheduled for single mastectomy with reconstruction on Monday 15 April.
I’ve spent past 6 weeks adjusting to diagnosis, tests, highs and lows of emotions but now just want to get on with surgery.
I’m self employed so really worried about financial impact of recovery, and now obsessing about genetic testing …I do know I need to take one step at a time, just really hard to do!
Sending you lots of love and I think of you on Tuesday!