Do I have hope?

Diagnosed with breast cancer Recently diagnosed with breast cancer
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Hi everybody, I’m so happy to have found this group.

I am 37 years old and I was diagnosed with breast cancer at the end of May and received the biopsy results on July 5 which was right breast cancer grade 3 IDC ER+ positive HER2- with no axillary LN involvement, extending more than 50 mm on MRI scan.

The plan was made to have surgery, fertility preservation then chemotherapy.

I then had bone density scan which was clear but my CT scan showed possible internal mammillary node involvement of 7mm.

I now have to go for a PET scan to confirm that it has spread to this region or whether it was just a coincidental infection. If it has this would mean straight to chemo and surgery after. This obviously affects my life long dream of having children. I am absolutely terrified of losing my life and am heartbroken that I may never have the life I envisioned. I have had to take diazepam to cope with the constant bad news with no end in sight.

I am grateful for the drs but I’m worried that it is over 2 months since I first went in & the lumps feels larger with more pain. Could it be spreading.

After each drs appointment I feel like I’ve been handed a death sentence and the communication makes it seem there is no hope at all. Has anyone had any experience with internal mamillary node involvement without axillary lymph node involvement and prognosis? I feel as though I’m living in a dream.

Thank you so much for taking the time to read this. I lost my partner to a few years ago so 3 months ago I was planning on starting a family alone and now I don’t know what my future looks like at all. Devastated.

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Hi there and welcome to the forum. I’m sorry that I don’t know the answers, but I do want to say that yes of course there is hope. You are hormone receptor positive and her2 negative, which is preferable in the world of breast cancer. Plus there is a solid plan in place, you are being well looked after. I felt like every appointment brought more bad news, however they are being thorough and that is crucial. As you are young, they will throw everything at it. However, they will do whatever can be done to help your fertility. I’m 46 and I’ve had my family, but all were conceived through fertility treatment so I’d say that science can do imcredible things. Talk to your team…they will tailor your treatment to your needs. Good luck and keep us posted. Remember, you always have hope. Xxx

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Sorry you have been having a tough time of it. I am at the start of the journey too, but it sounds to me like you still have hope. It is a possible node involvement - not a definite - so that feels like something to cling onto.

I am not sure if it helps, but I totally get the fear you are feeling - I am in the same place - petrified I am going to die and so sad that I may not have the future I’ve been looking forward to.

But they are looking to treat you, so that in itself is a positive.

Take care. xx

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Thank you for your response. I’m so grateful to be able to speak to people who have been on a similar journey. I feel very lost but your response has reassured me that all will be done to tackle this disease and to trust my care team.

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@niya44
I am really sorry to hear your story.

I was diagnosed with 3 tumours, biggest 55mm, grade 2, ER positive, HER low in May 22. At that stage, thought to have no LN involvement but after mastectomy found one positive, then back to surgery for full clearance where a second found.

I needed a CT to check for spread and of course I knew it had BUT of course it hadn’t. I was planning my family’s life for when I was gone and telling my husband what he needed to do for my daughter’s wedding days when they came because of course I wasn’t going to be there.

However 2 years later I am here working full-time, just come back from Europe holiday and off to lakes in a couple of weeks. No weddings or grandchildren yet but I have hope I will be here when those days come-at least I feel hope which I didn’t two years ago.

I won’t lie, chemo was hard but doable, surgery quite easy for me, radiotherapy not so bad, ongoing medicine side effects up and down.

My life has changed -I get more tired, still some bald spots on my head, concentration lowered (but is that cos I’m 58 trying to work full-time in demanding Job)…. But I’m here living life.

I was older and had my children and I can’t imagine how you feel To have got to a place where you were ready to embark on motherhood, having an image of your life would be and have that snatched must be devastating. However you don’t know yet that it won’t be an option-take one step at a time otherwise too overwhelming.

It sounds like you have already had some tough years and are a very resilient person. Dig deep, find that strength and hope that got you through then. Life is bloody unfair and crap sometimes but you sound a tough cookie.

take one day at a time
Try to find diversions to make those days pass quicker and nicer (building you up mentally and physically)
Start the list for your team, writing your questions, adding to it as you think of things
Is there anything you need to do for fertility preservation? Make sure you’re doing that now, keeping hopeful it will be an option then you’re ready to hit the ground running.
If sadly fertility preservation isn’t an option, there could be other options for you to be a mum-donor eggs, surrogacy, adoption. I know that likely wasn’t in your dream but the end result may be more important than the path to get there?
So keep hopeful, look after yourself, one day at a time
Big hugs

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@flojo Thank you for your response, I’m so sorry that you are going through this journey too and it sounds like you are experiencing the same feelings that I am too. I have seriously low days but I’m also finding it helpful speaking to people experiencing the same and I’m taking comfort in talking to these phenomenal women who have walked this path before.

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Hi @LauraR thank you for taking the time to respond!

I really had a glimmer of hope hearing what you went through and how you have come out on the other side and are living your life exactly how you should!

I’m in a better headspace not feeling as isolated as I did before I discovered this forum.

I will try to dig deep to find that resilience but I was really hoping I wouldn’t have any use for her for many years but that’s life!

I am starting to consider different methods of starting a family after this fight is hopefully completed.

I appreciate you sharing and fingers crossed for those grand babies soon :slight_smile: xx

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@bluesatsuma Thank you for your response. I’m so grateful to be able to speak to people who have been on a similar journey. I feel very lost but your response has reassured me that all will be done to tackle this disease and to trust my care team.

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Hi @niya44
Sorry your going through this , forum does help and gives you hope we all have been on similar journeys , I always dreaded my consultants visits there was always a but or they found something else . As @bluesatsuma said they will throw everything at it the treatments are improving all the time , don’t loose hope xx

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Hi @niya44 I’m very sorry to hear about your situation but I’m concerned about who you have supporting you through this. Having close family and friends support is great and I hope you have those people in your corner but they may not “get it” in the way that those of us who have been where you are now do. It may help for you to investigate Breast Cancer Now’s “Someone like me” initiative. The details are on the main page of the website or you could call the nurses on 0808 800 6000 Monday to Friday. They would look to pair you with someone of your own age who may have had mammillary node involvement or who have needed further investigation. I don’t know if it would be possible to pair you with someone who had been through fertility preservation but you could ask. On top of that but a bit more public would be the Younger Women subcategory which you can find under the Connect to People Like Me main category on the forum home page. The issues and concerns of younger women can be different to older ladies so it’s there specifically so you can get support from other women in your age range.

To your first question - YES you do have hope. Lots of it. Breast cancer of all types is very treatable these days. Survival rates are the highest they’ve ever been. You’ll have walked past multiple BC survivors in the streets and supermarkets without knowing. I wish you strength to go through your cancer journey and suggest that the best thing you can do is trust in your medical team, they have seen it - and treated it - all before.

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Thank you @charlottebee I am going to look at the positives and be grateful that I am fortunate enough to have access to a care team with experience and should trust that every bit of news and every delay is just with the intention of giving me the best treatment possible.

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Thank you @Tigress I’ve just sent them an email and hope to hear back from them on Monday. I would love to speak to ladies with similar circumstances too. I’ll also have a look at the other forums

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@niya44 You do have hope. There is always hope. My niece in law was diagnosed with breast cancer 6 months after she had given birth to her first baby. She was in her mid twenties then. I can’t tell you the exact type of breast cancer or treatment that she has had I’m afraid. What I can tell you is that the baby is now 19 and his mum is still here, still having treatment off and on when a new lump or ‘shadow’ is found. She also went on to have 2 more babies.

There is always hope.

Love to all :heart:

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Hi @niya44 :wave:

I’m so sorry to read your story and everything you are going through. I can relate to the feelings of terror and panic, it’s a horrible thing to go through.
I just wanted to share that I have been through egg collection and it only took 2 weeks in total from my first injection at home to the day of the egg collection (being day 14) under sedation. So there is a good chance you could get this in before chemo even if it the first of your treatments? I was referred for chemo first as an urgent referral from my diagnosis. So there wasn’t a lot of time to get the egg collection done but we managed it! The way I did it was I said to the hospital that I didn’t want my chemo delayed to do the egg collection but if there was time then I wanted to do it. I let my breast care nurse know and she communicated this to the team looking after me so I was referred into the fertility clinic as an urgent referral too! I also said to the fertility clinic that my cut off date was the Monday or Tuesday otherwise we would have to scrap it as I couldn’t risk not being well enough to start chemo. Luckily for me I just got it done before chemo started on that Thursday (same week).

I also convinced myself that my lump had got bigger and that the cancer had spread to my bones before treatment as I had rib pain (I think it was due to crying for 2 weeks solid) but it hadn’t. I also had to wait out results from a CT scan so know how utterly stressful and terrifying it is waiting for scan results - I think I literally planned my funeral that week! I remember feeling like I’d been given a death sentence at my diagnosis, and felt like a guillotine was waiting above my head. But in fact…it wasn’t. The chemo I had completely got rid of all the cancer, and my surgery results were completely free of cancer. And now I am onto radiotherapy next!

It helped me at the time to take one day at a time, I just focused on getting through each day and be kind to yourself, allow yourself to eat and drink whatever you like!

Wishing you lots of luck with your treatment xx

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Forgot to mention but little lifts do an awesome free box for women going through chemo for breast cancer https://www.littlelifts.org.uk/get-a-box/ - defo recommend when you get referred for chemo x

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Hello@niya44,

I wanted to send my support to you as your story brought back memories when my daughter was diagnosed at 39 with a nine month old son.
She was her2+ and needed chemo pretty quickly to start with then surgery and radiotherapy.She was offered to freeze her eggs at her first appointment but very reluctantly and sadly for her she declined.It was her and her partners choice and they decided that their son would be quite special and are so grateful as all she ever wanted was a sibling for him.
As previously mentioned although everything seems against you at the moment hopefully there will be an opportunity and time to freeze your eggs.Don’t give up.
The first few days and weeks after diagnosis she must have rung the helpline numerous times needing reassurance that the cancer hadn’t spread.
Like you she was given medication to help her through what is certainly probably the hardest part while waiting and waiting for results and fearing the worst.
Three years later she is happy and back at work.Of course she has her wobbles every so often but please please don’t give up hope.Things often turn out unexpectedly for the better and once you have an idea of the direction your treatment plan is going you really will feel more in control of your life.xx

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Hi @niya44, I am so sorry to hear about your diagnosis. You are so young…and sorry to hear about your partner too…my husband was diagnosed with multiple sclerosis a year after my diagnosis…

I was 43 when I was diagnosed with lobular BC back in 2021 and had 3 positive LN so I had full axillary node clearance. It can be really scary waiting for scans. Can you go private? What I can suggest is try to stay positive. The internal mamillary nodes involvement is something I recently found out about. A friend of mine had hers removed 2 years after her primary diagnosis. They didn’t catch it in any of her PET scans before and she had chemo, RT and surgery in 2021/22 but had her internal mamillary gland removed last December. We had our diagnosis at the same time in 2021. Unfortunately, hers was triple negative and her tumor didn’t respond well to chemo. I don’t want to scare you or anything like that but she was diagnosed recently with a secondary BC…saying that your case is totally different - your cancer is different and if they’ve picked it up now on a CT scan and it’s with cancerous cells (you don’t know that yet!!!) they can remove it and you can go onto having chemo and RT, etc…there are so many new treatments and trials…Don’t overthink what is a thought in your head is not actually a fact!!!

When I finished my chemo and radiotherapy I was thinking that’s it but my oncologist put me on Abemaciclib for 2 years and I didn’t even know about this drug before…as yours is hormone positive there are so many treatments available…

Mine was very big tumor 12.5cm and spread to the lymph nodes and I was thinking the same is this it…?!? I’ve been through a lot but it gets better…people nowadays live longer even with secondary BC…there are always new treatments and I think the fact that they saw it now and not two years later is a actually a good news even if you feel scary which let me tell you is totally normal…you need to try and find the positive in everything…

There is always a HOPE!!! Always…

Wishing you all the best with your treatment. Xx

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Hi @emmeline1 our journeys sound very similar! Thank you for taking the time to respond! I’m really happy to hear you managed to go ahead with your egg preservation, it’s very reassuring!

As soon as I heard that I may possibly have LN spread & may need chemotherapy first (as opposed to surgery-fertility-chemo) I contacted the fertility specialist (had been to see her a day prior & egg reserves, AMH levels all good) to inform her and request egg retrieval before my PET results in case I need to go straight to chemo. The fertility consultant was extremely empathetic and helpful and contacted my oncology team to see if we could start preservation pending PET results. Unfortunately this was declined with the reason being I may not be healthy enough?? & my long term prognosis is unsure?? That alone sent me into a spiral of are they saying I may not make it so why save the eggs?? I’m struggling to understand why we can’t go ahead as I have 3.5 weeks before my next face to face with the results and treatment plan? Could this possibly be due to NHS protocol? I’m wondering if it may be wise to go private for the fertility preservation but also unsure if it will affect my cancer. I’m very confused but I really want to make sure I’m advocating for myself.

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Hello @mun4o thank you for your response and sharing your experience. I’m sorry to hear about your partner’s diagnosis, it really hurts to see a loved one go through any type of pain and feel helpless.

I appreciate you sharing your friend’s experience and I’m sorry that they didn’t catch that on her initial scans. Heartbreaking and unfair.

I’m so happy that you have pulled through and I get hope from you sharing your experience.

Thank you for the encouragement, it means a lot! I will keep positive, starting to slowly feel like I can do this. Thank you

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Hello @blondegirl your daughter is very lucky to have you for support xx
I take comfort in the fact that 3 years later she is happy and back at work!
I agree, I think once I somewhat have a clear path/answers I may feel slightly less anxious about it all? Thank you for speaking to me xx