Just diagnosed

Hi everyone

I was diagnosed last week and came upon this forum having searched for somewhere where I could ask for advice and read others stories.
I’m 39, and very fit and healthy or so I thought !
I’m in limbo at the moment as waiting for some more results which will determine treatment etc. At the moment the talk is of surgery with chemo highly likely.
I feel so scared and despite having great support from friends and family I feel very alone.
My mum died from Ovarian Cancer 13 years ago when she was 52 and although everyone is telling me to be positive I am finding it really difficult! Both my maternal grandparents and uncle have succumbed to this crap disease and I feel luck is not in my side!
I have a 6 year old daughter and I have to be strong for her. Any words of wisdom would be appreciated
Thanks for listening. Rant over!

Hi Sarah,

I’m 37 with an 8 year old and a 10 year old so I know how hard this us ((hugs)).

I was diagnosed with an Invasive Ductal Carcinoma on 1st June. It will be 5 weeks on Wednesday since I was diagnosed and I think I’m dealing with it better now. In the beginning it was the moment of realisation when I woke up that got me each day but that has passed in the last week or so.

Waiting is the hardest I think. I had my Wide Localised Excision and Sentinel Node Biopsy last Tuesday but won’t get my results until the 13th. I do feel better now that I’ve taken some action to remove it but it’s hard not knowing if they got it all and if it had spread.

Mine is oestrogen positive HER2 negative so have always known I would need 3 weeks of radiotherapy and then 5 years of Tamoxifen. As I’m HER2 negative I don’t need chemotherapyand Herceptin, but may need it if it has spread or is very aggressive. My age will play a part. My hospital won’t comment on stage or grade until 2 weeks after surgery when all results are in. They won’t go on the core biopsy results for that.

I know there is nothing I can say to make you feel better but I think it helps to know you are not alone. We are all here for you.

Cat xx

Hello Sarah. I have been diagnosed on the 13th June with early breast cancer and had surgery to remove a small lump last Thursday, and am feeling fine apart from a bit tired. I will now have a wait of a week or two to determine treatment, and if the initial diagnosis is correct it will be rads-but I am prepared for the possibility of chemo. I am 42, so like you was not expecting this at all!  I have had family members have different types of cancer, and it is difficult to dismiss this-but different cancers have different outcomes and breast cancer is so well researched and treatable, even compared to 5-10 years ago, that I am trying my best to keep positive. Each cancer is unique to the person who has it, so try not to dwell on family history if you can. I hope you get your treatment plan soon as I am sure you will feel a bit calmer once you have some facts and a plan of action. I’m not a Mum and I’m sure that adds another dimension of worry for you, but you will get through this. I was so nervous about surgery, but it was nothing to worry about at all - I felt a bit groggy when I woke up but was home and stuffing myself with macaroni cheese by tea time! Woke up the next day feeling a bit sore but not in pain at all, and have been doing the recommended gentle exercises every day. If you feel up to it please post again and let us know how you are getting on? Take care of yourself, Jo. Xx

Thanks ladies. It definitely helps to hear other similar stories. I do think once a plan is in place I will feel better. I think it’s the fear of the unknown and the long term that scares me the most at the moment. I am waiting for the results of a second biopsy as there is also some calcification which I am hoping is benign but if not then it’s looking like the whole breast will have to be removed. Thanks again for listening x

Hi Sarah, it’s such a shock isn’t it when you feel so well and healthy. I’m 49 so a bit older than you and have 2 boys who are 11 and 14. I had a lumpectomy then a re-excision due to unclear margins back in March. I’ve been taking Tamoxifen since April and finished 20 radiotherapy sessions 3 weeks ago. I now feel I have made it to the end and feel really positive about the future - the cancer has been removed, the Tamoxifen will starve future tumours and the radiotherapy has hopefully fried the life out of any cells left in my right breast. I wasn’t so positive in the beginning though and really struggled emotionally as I felt I was constantly in limbo whilst waiting for this or that test result. I would end up crying if I bumped into friends at the shops who asked how it was going! One friend hit the nail on the head when she said that having cancer can be a very lonely experience and she was right - you can be surrounded by lots of lovely people all trying to help but no-one really understands how you feel unless they have been through it themselves. Since my diagnosis in Feb I have read a few very positive reports about advances in breast cancer treatments and that is in the space of just a few months. When you know what your treatment plan is you will feel better as you will be doing something about it. I didn’t think I would ever feel truly happy again but I do. I really hope you get all the support and advice you need, this forum is full of lots of wonderful ladies who really do know how you feel and have a wealth of advice based on their own experiences.  Take care and keep us posted as to how you are getting on.  Michelle xx

Hi Sarah!,

I’m soooo sorry you have to find yourself in this situation. However, as scary as it is you will get to the other side. It will take some time and a lot of energy, but the result is worth it. I’m now 37, diganosed at 36 in January Last year, I have a 14 year old daughter (then 13) and I’m a single mum. I had a double mastectomy, then two fertility treatments, then 6 rounds of chemo, then reconstruction surgeries and am on tamoxifen now for 10 years. It wasn’t easy at all BUT I’m on the other side and now focusing on recovery. You will get there too!!! Hugs and kisses! xxx Julia

Hi Sarah, 

as someone said to me this weekend when I joined here, thus us the club you don’t want to be part of but by golly I can already see everyone here I have had responses from has been awesome.

 

i got diagnosed on Friday (was biopsied last Tuesday) - I’m 49. Above all don’t feel you are alone. Your specialist nurse and everyone here will be rooting tooting for you. Being fit and healthy will help. But please don’t feel you have to be brave, you just have to be you. And there will be lost of support. Rant whenever you need to so.

 

much love and sorry you’re in this horrid journey with us, but we can keep each other going 

Lisa x

And definitely have a HUG {{{}}}

Thanks everyone. I’m feeling quite positive at the moment. Friday seems an age away at the moment though! I spoke to one of the cancer nurses yesterday as I had thought of yet more questions, and she was really helpful in allaying some of my fears. Since being diagnosed I seem to have numerous aches and pains materialising which I’m sure are stress related and nothing to worry about, but I’ve been imagining all sorts! Sending hugs to you all x

Well just over an hour to go till I get some more results. I’ve been willing today to come round and now it’s here I’m terrified! Dry mouth, palpitations etc! Fingers crossed for some good news x

Sarah

Hope every thing went OK yesterday xx

Hi Bibi. It was good and bad news really. The calcifications are DCIS so it means a mastectomy. However the cancer itself is ER positive, HER2 negative which my consultant tells me is one of the best of a bad lot! I’m booked in for surgery on thurs with immediate reconstruction and fingers crossed I’ll be home on Friday. Chemo will probably follow but that’s not a definite. It will depend on what they pick up during surgery. They are pretty confident it hasn’t gone into my lymph nodes but again they will know more post surgery. I have to say I feel a lot more positive now something is happening. Thanks for asking
Sarah x

Sarah pleased it’s DCIS & all your markers are facing the right way!  You may get away without chemo if they don’t find anything else, but best prepare yourself for it to avoid another nasty shock.  I was her2+ grade3 from the start,so knew what was headed my way after surgery. All the best for thurs & hope new boob looks as good as the old.  Can they do nipple sparing mastect at your place? Top quality NHS trust fitting you in so fast… I had to wait four weeks, like you LisaM, & it really is not easy to function during that time.  You feel perfectly normal, but your brain goes a bit mad.  I have little recollection of that period in my life now. Even chemo seems like a dream when I go back in for half an hour every 3 weeks for my Herceptin.  I see the poor sad souls with their ice caps on, as I remember the Herceptin ladies dancing in & out, seemingly without a care in the world, when I was in the chair.  I know it seems unlikely right now, but I am a year on from surgery & feel happy, healthy & fit, so don’t worry, life does eventually get back to some kind of normal, even though not quite the same as before. All the best to you both.  You can do it. xxx

I’ve been really lucky with my NHS team. Everything has been brilliant so far. My Consultant has even re-scheduled her diary so she can operate on me, so I feel very well looked after!
Bibi I’m not sure about the nipple sparing? I’m preparing myself for having to have Chemo though as I think it’s more likely I will need it due to my age. I will also be on Tamoxifen. I’m just praying the lymph nodes are clear as I know they don’t always show up on Ultrasound.
I feel for you both having to wait, as I think that’s the hardest part emotionally.
Sarah x

Hi Sarah,

I’m so glad you are feeling well looked after ? I was originally offered an operation date 13 days after diagnosis for my WLE and SNB but due to family commitments postponed for 2 weeks.

Like you I’m not due chemotherapy at the moment due to being HER2- but I too am leaving it on the side of the table so that I’m not too disappointed if I need it due to surgery results.

I get my results at 10.30am on the 13th. Much relieved only 3 more sleeps to go. However, I found a lump in my right breast this week identical in feel to the one I had removed from my left side. They are going to investigate on Wednesday. Praying I’ve not gone for the full set.

I hope you have a good week without too much worry.

Best wishes for Thursday, will be thinking of you.

Cat x

Hi Cat.
I hope you get some good news regarding the other lump. I will keep everything crossed for you.
I’m pretty positive at the moment, although come Wednesday night that could change!
Sarah x

Hi Sarah. I am 47 and diagnosed in 27th June. Had a lumpectomy and SNB on 8th July. I get my results on Thursday so will find out what treatment I need. I’m ER positive but still waiting for HER results. It’s such a new world we are all entering in to isn’t it and learning at such a fast rate things we never thought we would have to. My kids are 18 and 22, after the initial shock they have been fantastic. Make sure you take advantage of all help offered to you after surgery, it’s hard as a mum to not do everything but you will recover quicker if you do. Good luck for Thursday I will be thinking of you xx

Thanks Sue and Seaview. It certainly is a strange new place we find ourselves in. So much to take in whilst at the same time trying to stay positive and strong. I’ve explained to my little girl that I won’t be here Thursday morning to take her to school and she’s more excited that she’ll be going without me! Kids hey!
Sending hugs to all x

Hugs to you - waiting for results is never nice.

Let us know how you get on, if you wish to share the info.

HUGE HUGS

Sue xxx

Hi all. So surgery done and back on the ward now. Very sore and quite sleepy but they are pleased with how it’s gone apparently.
Sending love and hugs to everybody
Sarah X