The waiting is awful

[amyj]

Hello,

Crying my way through joining a club no one wants to be in…at 39.

I found a lump in the outer edge of my right breast in mid-July. I visited the GP as it felt hard & I was really worried. He referred me to the breast clinic with the reassure that his clinical opinion was that it felt benign - moved about, was probably a fibroadenoma.

I went to the breast clinic later that week. The consultant had a feel at it, said he agreed with my GP - it felt benign. I made sure he knew that I have had swollen lymph nodes all over my body for 4.5yrs, & that my GP & the hospital have just called them ‘idiopathic’, said they would be ‘really huge’ if I had a lymphoma (which was my real concern when I first found them in 2020 & would keep growing - this isn’t always true at all). I was sent for blood tests, given folates for 3 mths, which I did not take. No one did any scans (US or MRI). Said my bloods were fine, they’re ‘idiopathic’ - no further action. Take Ibuprofen if they give you any pain. They have been permentantly present ever since, some stay the same, some get bigger & smaller.

The breast clinic consultant shrugged, said it could be I have a swollen inframammary node & that’s what the lump is. Probably benign - there’s no space for same day imaging today (26th July), so I need to come back, we’ll do ultrasound on 2nd August.

I went to my Breast Clinic appointment on the 2nd August. I could tell after ultrasound that everyone was acting very stranger & asking weird questions like had I come alone? I was terrified.
Mammograms then took place, both sides. Another ultrasound of both sides.
They spotted a 8mm cyst on the left that I had no idea about. Took biopsies of what they said was 11mm & definitely not a cyst, on the right - the one I could feel.

The Advanced Practitioner Nurse then saw me before I left. She said they are sure it is breast cancer & my world fell apart.
I cried, & asked all those selfish ‘why me?’ questions, & was in immediate grief for my health, my body, my life style…

I don’t feel 39 - I am fit, healthy, strong, I hike, I do yoga 4x a week, I work full time as a primary school Social Worker. My favourite weekend & holiday activities are climbing waterfalls, wild swimming, hiking to remote historic sites.

I split up with my partner of 12yrs in January. Trust was gone. I’ve got no children & never wanted any, but now am so glad I made that choice & they would not need to watch this. My own mum died if MND when I was 26 (it was horrendous). I’m worried about my niece & nephew & my sister…I’m ‘fun, adventure auntie’…I wanted that for a lot longer…my beloved dad, who’s side I stood at as we cared for mum together (my sister & her family live in Holland): dad & I are each other’s best friend, rock, support for everything…he’s my hero…
He’s been at every appointment with me & I know he’ll keep that up, but how can he do this illness thing again with his youngest little girl? Because I know that’s all he sees - his baby, the poor man.

I have to go back for the results of my biopsy on the 15th Aug…it feels way too long. I’m terrified they’re letting it spread if it’s a BC, I’m terrified I’ve actually had lymphoma for 4yrs, as I was afraid at the time & this is, though rare, breast lymphoma now. I’m horrified by the idea of surgery - I have a deep fear of blades & being cut, & of scarring I can’t accept.
I have never, ever had issues about my body - I know this will give me those & make me withdrawn & depressed if it is done in a way I can’t look at or accept. I’m worried I caused it & it’s my fault for having taken the pill for 12yrs (I stopped it immediately on Friday) & drunk alcohol socially with my family & friends. My risk factors end there as far as I know - last person in my family to have breast cancer was my great aunt & that started as a skin cancer on her forehead.

The nurse talked about Chemo, & radiotherapy… I have long, curly hair - such a huge part of my personality, as is my body confidence, & taking care of, working hard on eating a good diet & keeping fit & strong…

My whole life will change now.
Surgery, different body, different feelings, possible forced menopause, bald, sick, unable to do what I love.
Everyone keeps telling me how a positive attitude is key - but I’m just beyond sad right now, I’m angry, I can’t eat or sleep for fear. I love my life & who I am - no one wants to have to do this.

I’m sorry I’ve ranted - it felt a little better just to be honest & hope I won’t be judged, though. I guess I just have to suck it up & get on with it, & hope for the best possible news from the biopsy that it is only there.

I’m probably sounding ridiculous given what some of you will be going through/have been through, to be like this at this stage.
One day at a time.
I wish I could sleep.
The 15th is so long.

Much love
Amy x

[pat]

@amyj you don’t sound ridiculous. You dont have to apologise for saying how you feel. It’s good that you can express it. What you have been told is the most terrifying thing in the world. The waiting you are going through now is the hardest part of the whole process in a way as you don’t know what you are facing yet. Once you do know exactly what’s happening and a treatment plan is suggested to you then its easier as you can then see how your life for the next 6 months, a year, or whatever will be is going to look. There are very few people on these forums who haven’t thought the things that you have got in your head right now. I had a 3 week wait between the appointments with the surgeon and the oncologists - I’m having chemotherapy before surgery - and convinced myself that in those 3 weeks every single cell in my body had become riddled with cancer. Of course they hadn’t.

Once this is all over you won’t be who you were, but you will still be essentially you, and that won’t necessarily be a worse version of you. It will be the version of you who has overcome something terrible and lived to tell the tale. Just like you are now the version of you who coped with your mother’s awful illness and supported your father so magnificently. You will be able to get back to doing all the things you love.

The forum is always there to support you. Your breast care nurse, and the nurses on this forum are also at the end of the phone when you need them. There is also counselling available through Macmillan, plus Maggies Centres if you are near one. You aren’t alone in this. You won’t be alone, even if you feel it because you are the one having to go through it.

One day we will all be ourselves again

[Tigress]

Hi @amyj I’m not a younger woman so I’ll keep this brief. You need some support in the short term over this - is there any way you can get in front of your GP to get a short course (usually 5 or 7) tablets to help you sleep? Everyone on this forum will tell you that you are in THE worst phase. Waiting for results both after biopsy and after surgery are the worst as the imagination fills that vacuum left by lack of facts, with worst case scenario. I doubt that there’s many on this forum who hasn’t catastrophised at the beginning. There are set protocols for testing tissue from biopsies and then discussions about the results are had with the Mixed Disciplinary Team (MDT). It is what is, you can’t change that but you can seek help to change how you feel about it, so call the Breast Cancer Now nurses on 0808 800 6000 to download, get in front of your GP, phone MacMillan, get to a Maggie’s and keep posting here. You’ve been through an awful time with your Mum (I know, my partner died of MND) and now you have this potential diagnosis to deal with, my heart goes out to you. Please let us know what you’ll be dealing with following your results appointment.

[blondegirl]

@amyj Bless you I’m so sorry you are going through such an anxious time but you have taken the first step towards support by joining this amazing forum.

My daughter was 39 when she was diagnosed three years ago.Like you her and her whole family’s world fell apart.A fit healthy young lady with a nine month old son.She thought life would never be the same again.She cried solidly for days after her diagnosis.

The fear of what is to come and the unknown can be truly overwhelming but…… step by step firstly your results which I’m sure every lady on this forum probably finds the wait is the most anxious time.The days and nights seem endless,we do all understand and we are all here for you on this forum.As already mentioned Maggies is a great support and also the nurses on here.

Whatever lies ahead although it doesn’t feel like it at the moment you will with the support of your loving family and the very many support services available to you manage to steer your way through this challenging period of your life just like my daughter.

In a few weeks time she will be tackling the Great North Run her first big event as like you she was always fit and sporty.She doesn’t care about the time taken just to be out there once again training and running will be her achievement after completing all her treatment.

I send a virtual hug to you knowing only too well how you must be feeling xx

[amyj]

Thank you, I’m so pleased to hear about your daughter’s progress. I have booked a private oncoplastics consultant a few days after my appointment with the NHS on the 15th. I want to know what all my otions are regarding scar placement etc, whether I need mastectomy or lumpectomy, I think i would want immediate implants & for both sides doing as I am very slight around my chest, rib collarbone area, & though I wear a 34C bra, I have to start out on the tightest fastening & am really only about 32/33 round the ribs. Any change to my right breast, even from lumpectomy would be very noticeable, I think, & having been through & healed myself from all that life has thrown so far, I’d like to keep my mental health & body confidence intact as much as possible. If that costs £8000, so be it. Thoughout all the years caring for mum, there was an end in sight (as awful as that sounds), for her & for us, & I think it is not knowing what you are facing or how to fix it to your satisfaction, being completely out of control of that, that is the worst right now. Booking the private appointment felt like a little choice & control.

[LucyJ_BCN]

Welcome to the forum @amyj

I am so sorry to hear that you’re going through such a difficult time, and I am glad you’ve reached out here.

Your feelings are all completely valid and there are many people here who can relate to them all. The forum is here for you, however you are feeling.

Our specialist breast care nurses are also here for you - whether you have questions or want to chat things through. You can reach them on our free helpline 0808 800 6000.

As well as this dedicated area of the forum for younger women, we also offer face-to-face and online groups that give tailored support and the chance to meet people who understand what you’re going through, in a space that’s just for women aged 20-45. If you’re interested, you can find out more on our website: Younger Women Together | Breast Cancer Now

Sending our warmest,
Lucy

[methnic]

Hi Amy
I’m so sorry you’re going through this, I thought I’d reach out to you as I was diagnosed at 38, I had 2 children at primary school and my marriage was in trouble.
As the other respondents have said, the waiting is hideous- there’s no limit to where your fears can take your imagination, and it really is easier once you have a plan.
Im 65 now, Amy it’s 27 years since i was where you are. My children are in mid and late 30s, I have 3 grandchildren.
Like you, I love hiking and aged 57 I decided to do the Great North Run in memory of a friend and had my 58th burthday in Kathmandu, having hiked to Annapurna base camp.
I’m not bragging, I just wanted to make sure you know that there is life after breast cancer treatment and it can be wonderful!
Take care of yourself, be kind to yourself and give yourself time to take things onboard at your own pace.
You are clearly a good communicator- I found keeping a journal helped me through the journey.
I’ll be looking out for your posts
Monica

[balchik]

Hi, we’ve all gone through the same thoughts & fears & this website really helps. My own experience has been good compared to many. Do not worry about having a lumpectomy, I had one then had an excision 6 weeks later as my margins weren’t clear. I didn’t even need the pain killers they gave me after either of my surgeries, you’re asleep in seconds & it’s over when you wake up. I had no loss of movement either. My surgeon removed some fat from my stomach during my lumpectomy to fill my breast as I am small busted too. She cut into the original scar the 2nd time, it was very neat & directly under my bust so can’t really be seen & is already starting to fade. I only needed radiotherapy, so from finding my lump to finishing treatment it was exactly 5 months, which I find amazing. The longest wait was 3 weeks to get the results of my biopsies, both surgery dates were really quick. My whole experience through NHS has been first class & very quick treatment. Good luck with everything & post on here as it does help when you feel you don’t want to burden your family as we are all going through similar experiences.

[bigpickle]

Hi Amy

No one will judge you. We are on here because we are on or have been on the same journey. I forget how many times I said “why me”. Life certainly throws some curved balls at times. I am much older than you (61).
I had surgery at the end of May. This was a lumpectomy and thereupeutic mammoplasty on the left side and reduction on the right side. I have scars on both sides. But I just look upon them as a reminder of the battle my body went through. I wasn’t due to have chemo until the final histology gave me a HER2 positive diagnosis, so that was a shock. I have come to terms with it. I also have thick curly hair, although mine is short. I had a wig fitting last week and love the one I am having, it is so like my own hair, even my husband liked it. It is hard to stay positive when you feel totally opposite. But I am sure that I am strong and I will come through this.
All the best xx

[Curlywurly1]

Hello
Please talk to your GP about help with sleep and thinkabout t yoga, Pilates or similar to help you relax and hopefully be a little distracted from the waiting

Do Not Google

If you have questions please talk or use your team, the nurses or sources on here or the Macmillan sites please as you are unique and its about you and not the world

Until you have a plan its going to be horrid and scary, a world of worry and your past does not define your future so breathe in and out and do things you love

Virtual hugs

[jeml]

First of all i just want to say im sorry you are having to go through this!
This was me In June in the exact same position, i could tell the way they were acting with the ultrasound etc then they told me it looks like its cancer so i would put that in your mind. Im only 33 with a 2 year old and my world fell apart there and then… i was the same ’ why me ’
The waiting is awful, i really do feel for you. But if it is C then they will have a plan in place for you and lots of support awaiting. Once you know the plan it is true you feel a lot better. Remember breast cancer is very treatable now.
Im having my second lot of chemo next week and my first one i was scared because its something i never thought i would need to have. But to be honest its not as bad as i thought it was and if its going to help me with healing then bring it on.
Breast c is one of the most treatable ones and you will be in good hands.
Once they give you your plan you will want to crack on with it.
Im sorry your going through the wait, i spoke to my GP and he gave me some phenergan to help me sleep and take edge off. Maybe you could speak to yours and see if they can help you along the way. X

[aniat]

@amyj I am sorry to hear you are in this sh## All is valid and you are not to blame for anything.

System is not ideal - just concentrates basically on saving your life, surgery and treatments.

I wish mammography was done earlier, I wish I had it done before I went on HRT ( when I thought I got my life back for few months). I wish they checked younger women when on pill ( or at least tell everyone - that’s the prevalence, that’s national screening programme, there is no funds but check yourself on private every two years…).

But the LAST thing I am gonna do is to blame myself. There is a link between breast ca and major life events, grief, chronic stress BUT blame everything else never yourself as there is no rule…

Also MH is crucial while waiting ( waiting is the WORST as everyone here says) and often there is no promised support - brace yourself. Ask your GP for talking therapies (waiting list is long) now.

Depending on your diagnosis - ask for psychotherapy referral straight away if it is BC, ask and dbl check if you are on support group and have a buddy. Sorry, I am having a terrible experience with MH side of things at KCH London. Everything else goes smoothly.

Op (lumpectomy) was much much easier than I thought to go through, just waiting for histopathology results after was awful.

Unfortunately I have to have SLNB this Wed. My final treatment plan will depend on this and HER2. But lumpectomy was ok - scar healed pretty quickly, little dent at the side.

They always try to do it for the best (realistic) cosmetic result. Good to check the surgeons etc E.g. on iwantgreatcare website. That’s what I did. And I am happy with surgery so far.

If you are into yoga maybe do some meditations if you can to manage anxiety.

This is so much about managing our minds, fear, unknown, side effects and all.
Unfortunately as remnant of Industrial revolution we are just treated as body parts not a whole person. Processing emotions is very important in any major life event.

I am still at the beginning of this journey and it’s very lonely and scary and you have to fight for any extras… it is a true rollercoaster.

I found this forum really helpful and Dani’s podcast that someone shared here https://podcasts.apple.com/gb/podcast/the-menopause-and-cancer-podcast/id1631842514

While waiting for psychotherapy I will be drawing and dancing the drawings ( Anna Halprin’s somatic healing) as I have to process my emotions…

So do your shopping around, try to strengthen your body ( and mind) now and fingers crossed for the best resits you can have on Thursday.

Ania

[ivyprincess1980]

@amyj My heart aches for you. I’m not quite as young as you 43 but you’ve hit the nail on the head with waiting being the worst! So true! I was diagnosed 3 April and was lucky they’d found it (9mm went down to 6.5mm) but my world still fell apart and I was so worried about my kids. Like you I was fit so that for you is a bonus lovely as you’re recovery should in theory be quicker. You’re clearly a very strong lady and other are correct there’s help on here or vent on a forum like this someone will always reply as we all have the same thing in common and one thing I’ve learned is that there’s a whole community of us supporting each other. Best of luck for 15th and hopefully you’ll be more settled when you know the treatment plan. I wanted to hit the fast forward button but that’s the thing with cancer there isn’t one, it’s a big mountain but each day you get up, go out and climb a little higher. You’ll be an even stronger woman after this lovely. Xx

[fiman12]

I agree the waiting was the hardest. Today is the 15th, and I hope you are given a clear picture of what has to be done. I felt so much better knowing what I had to deal with. You will never be alone. You will sleep better after today. Sleep is important. Please don’t think that you have to stop everything . I ran throughout chemo, after 2 surgeries (when frustratingly at first, I had to walk whilst I healed). Staying active and being fit, really did help me. I didn’t lose all my hair, as I did the cold cap, it’s now thicker than before and so curly. I used lots of hats and scarves until I felt more confident. I was never sick. Hope these are a few positives, to combat your natural fear of everything being so awful. I have met so many lovely people on my journey (treatment ended last June), and I’m off to my weekly fitness group with 70 and 80 year olds, who have had BC. I’m 56 and only another lady in her 50’s. Absolutely love the class and the company, and if I’d not had BC, I’d never have been there. Stay positive, stay strong, and look after yourself, as well as your Dad

[amyj]

Thank you all for your kind words.
I think the positives about people who have had long periods of life free of cancer after this nightmare are so helpful - I can only pray I can be one of those people. That this is just a short chapter and I can come out the other side still me.
I saw my NHS surgeon today - he confirmed the lump is breast cancer. It is 11mm x 7mm at the outer edge of my right breast.
Thank God above that I found it when I did & it is no bigger!
My lymph nodes look normal on the ultrasound but of course, they can’t be sure and he will definitely take one or two to check during surgery. I now have to go for MRI to help them be more sure that the hope that it is only in the lump is likely.
I think he said my tumour is Grade 1 (so, slow growing, which is good, I guess). I was very worried about the waiting - it’s so much time!!
If, after the MRI, they still think that it is the only area of cancer and the lymph nodes look normal, they are suggesting lumpectomy, radio therapy and drug treatment as it is ER+.
They don’t have the HER test back yet, so also still waiting for that. He said this might help decide if there will need to be any chemo.
The surgeon drew his suggested incision around the edge (tiny fold as I don’t have much flesh on my ribs) of my breast - it will be one incision so he can get access to the nodes he needs and be about 6cm long. I am very sad that it will stick out over the top of the edge of my bra/bikini/tops by about a cm under my arm - but at least, thank God, it is thought possible to do a lumpectomy at the moment.
The prayers now are that it can be knocked down with the lumpectomy & radio & doesn’t need chemo.
Seeing the private surgeon on Monday to see if he would place scars any differently or can give me any more information.
I still feel very much in limbo and there was a lot of ‘if’, so I guess MRI will tell a little bit more, then the real knowledge of exactly what we are dealing with is after surgery.
My 40th birthday is on the 27th September - 21 days after my (hopefully!) lumpectomy.
Happy Birthday, huh?
I am just beasting my body with exercise - just spent 4 days hiking mountains in Cumbria and planning to hopefully go to Wales next week - it helps with sleep!

[amyj]

I’m assuming tamoxifen is what he is talking about with drug treatment later, as I haven’t been through menopause, obviously, but I’m sure he used the name of a drug that began with an ‘A’. I will ask the private surgeon on Monday about it. It’s so hard to take in at the time. I need to take a notebook to appointments.

He also said it was good I’d stopped my pill straight away & I should not take the pill now. But was completely indifferent over alcohol and said it really has not been shown to make any difference in amounts that are not super excessive and as long as you aren’t in the habit of drinking like an alcoholic, he would not be telling his patients not to consume alcohol. Makes me feel a little better.
I’ve only ever drunk socially (weekends sometimes, parties, birthdays, Christmas), & feel much more like it has likely had nothing to do with this, so psychologically helpful.
Will likely cut back a little more, but not going to guilt over a glass or two with friends.