38 years old newly diagnosed breast cancer

Hi all, I have just been diagnosed with breast cancer. I’m 38 with no family history but was referred to the breast clinic after finding a lump where I had an ultrasound, mammogram and biopsy before the nurse told me the lump was highly suspicious. 10 days later and I went back to receive an official diagnosis, luckily feeling prepared after what the nurse had said previously and with my husband for support. I have HER2 positive oestrogen positive progesterone positive cancer, stage 2 grade 3. I have been given a treatment plan which involves chemotherapy and hormone treatment starting in a few weeks, then a lumpectomy, then maybe some more chemo before radiation. Obviously it has all been a shock and I’m really keen to talk to other women who have received a similar diagnosis. I’m scared about chemotherapy and how it will make me feel and look, and I’m worried about the effect of them shutting down my ovaries and blocking hormones - know it is required because the cancer is fed by hormones but I thought I had more time before menopause! & in all of this my biggest worry is how it will all impact my 4 year old daughter. She is my sunshine and I don’t want her to have to go through all that is ahead. Any thoughts, suggestions, tips would be welcome as I try and navigate this strange new world! Xx

  • Hello so sorry about your diagnosis, my story is very very similar just a little ahead of you, I’m 35 with stage 1, grade 3 hormone positive her2 negative breast cancer (also no family history). I have 2 young sons, 3 years and 18 months. I was diagnosed in February and have had my lumpectomy and now 2 out of 8 rounds of chemo. 
    you sound quite level headed and like you are coping fairly well so well done, I was an ABSOLUTE mess for the first 6 weeks, literally could not function. The first part is definitely the hardest it does get a bit easier once you start treatment and have a plan. 
    I have been cold capping and still have my hair for now but it has started shedding quite a bit, I can keep you posted on how it goes if that’s something you are thinking about? 

    I’d love to stay in touch as there are so few women in their 30s going through this. If you have any questions please ask, I’d be happy to try answer them. Take care xx

  • Hi Hannah, I'm so sorry to hear about your diagnosis, I'm sure it has been quite a shock for you. I was diagnosed in January with invasive ductal carcinoma. I have two lumps, one lymph node affected and cells in breast tissue. I too am triple positive, so started my chemo first. I was put on EC-T chemo, I've so far completed my  three EC cycles and have my second T ( for me this is docetaxel) on Tuesday. I then have two more docetaxel left to go. When I started the docetaxel,  I also started phesgo injections due to being HER2 positive, these will last for a year as far as I know. So far I have had minimal side effects, although the tiredness has affected me more on docetaxel. I chose not to have the cold cap, due to already being prone to headaches. I have lost most of my hair, which was obviously upsetting when it happened and I did have a cry. I've got used to it now and have a lovely variety of headware. I also have a wig which I'm really happy with, which I wear if going out for a meal or just socialising. I'm 61, so a lot older than you and had to stop my hrt immediately, which caused me a few issues with hot flushes and night sweats. My gp was able to prescribe medication to help and this has improved considerably. I found out this week that I will be having bone infusions when chemo finishes, which I'll be having for three years. I don't think everyone needs these, I think it depends on where you're at with menopause. Next steps for me is a mastectomy, followed by radiotherapy. I will then start hormone blockers for 5-10 years. I wish you well on your journey moving forward. Feel free to ask any more questions if you have any, take care. Xx

  • Hi Hannah, I'm really sorry to hear your diagnosis. However it seems like you have a plan! That's made it easier for me - to know what's going to happen. 

    I am 39 (with 4 and 6 year old girls) and I was told I have a grade 1 4cm cancer on 19th April. I was started on tamoxifen. I then had a MRI and Mammogram. I went last Monday to see the consultant and I was told I needed another MRI as the first MRI caught something on my liver. I panicked. But they said they don't think it's nasty - probably cysts. I had the MRI of my liver on Friday. And I've got surgery booked for 26th June. They need the results of my second MRI first and I need to be off the tamoxifen for 2 weeks first. 

    They said the lump is bigger than they thought. It's 4.6mm x 3.8mm. It looked huge on the MRI scan picture.  Its ER+ so a little different to yours. 

    It's been horrid for me as my Mum had this ER+ BC in 2006 at 56. Then it came back in 2016 and she died of metastatic bc in 2019. It devastated me. I always worried I would get it but I thought I would have more time before.  But I'm focusing on the positives and I won't be defeated by this. I have to be here for my girls. I haven't told them yet. I will before the surgery but I'm dreading it. 

    Keep in touch! I wish you all the best. X

  • Hi Em, I’m so sorry for your diagnosis. It seems mad to be that this can just randomly happen to such young women - even after I found my lump it genuinely didn’t occur to me that it would be cancer. Having said that I feel like I have managed to get my head round it & have had lots of conversations with family and friends. I’m not sure if I’m kidding myself though & will fall apart at some point! 
    How was your surgery? It seems like if it’s HER2 negative they do the surgery first whereas I’ll be going for chemo first. Do you have a PICC line? How has that been? Really interested in cold capping - how have you found it? I really hate the cold so I don’t know if I’ll be able to handle it but I really want to.

    How are you feeling in yourself and are you managing to take care of your boys? I’m guessing they are too young to understand much about what is going on? 
    I would love to stay in touch, even though I have wonderful friends I just know it’s going to be so valuable to talk to people who are going through the same thing, a bit like having an antenatal group when you’re having a baby, although I wanted to be in that club!

    Best of luck and take care, Hannah x

  • Hi Pippin, I’m so sorry to hear about your diagnosis and that you so much for sharing your story. I haven’t had my oncology appointment yet but from what the surgeon said when he told me the diagnosis my provisional chemo plan sounds similar to yours - I was told I will have 6 cycles 3 weeks apart and the phesgo injections. It sounds like you are coping amazingly well with the chemo so far! Are you able to carry on doing your usual day to day stuff? In my head I’m imagining being completely wiped out with the tiredness and nausea/vomitting and wondering how I will manage to look after my daughter. Did you get your wig and headwear before you started the chemo? I’m wondering whether to do this so I don’t get caught short with hair loss! xx

  • Hi Hannah, I know chemo can be different for everyone, but overall I have felt fine. I do get quite tired, especially now that I'm on the docetaxel. I tend to sleep on the sofa for a couple of hours in the evening. I haven't suffered from any nausea or sickness at all, they give you lots of meds to prevent this in the first few days. I still manage to do the day to day stuff, hubby and son do help out when I feel particularly tired though. I have been out for a walk every day with hubby, this was a goal I set for myself at the start of my treatment. The first week after treatment, hubby has to hold my hand and drag me round, but we make it lol! Think the walking has helped not just my general fitness, but my mindset too, which is just as important I think. Off to have my 5th treatment shortly, then only two more to go, which is great. Hope all goes well with your oncology  appointment, be sure to write down any questions, so you don't forget on the day. Xx

  • Surgery was totally fine for me, it was a lumpectomy and sentinel node biopsy. Recovery was pretty straight forward, minimal pain and scarring. I wasn’t offered a picc line they said they aim to just do a cannula each time unless there are issues and I’ve been ok so far. I’ve not found chemo too bad so far either just tiredness has been my main symptom. I thought I would hate wearing the cold cap but it’s nowhere near as bad as I thought it would be, I find it quite bearable. However I would say I start to get a headache towards the end and the chemo I’m on at the moment, EC, only takes about an hour plus you wear the cold cap for half and hour before and an hour and a half after so about 3 hours total, my final 4 treatments will be paclitaxel which I think takes like 3 hours to go in so will be like 5 hours total, I think that could be tough. I will let u know how that goes. I definitely recommend giving the cold cap a go as you have nothing to lose, if you can’t stand it or you lose too much hair then you can just quit but you could be one of the lucky ones it works for. At the very least it’s meant I have kept my hair an extra week (I believe you would normally loose it all between 2 and 3 weeks after the first chemo and I’m at nearly 4  weeks with a full head of hair). Don’t get me wrong it’s shedding quite a lot but no bald patches so far just a bit thinner. I will keep you posted on the shedding. I do also have a wig that was free on the nhs (I’m in Scotland and you get a prescription for free synthetic wig here) and I also got some headwear so I’m prepared for more or complete hair loss. 
    It’s been tough with the boys to be honest because they are a handful - 2 very energetic boys! So the tiredness makes it challenging, I’ve got them in another day at nursery so they’ll be in nursery 4 days instead of 3 so I’ll only have 1 day on my own with them. My youngest is definitely too young to know what’s going on and my 3 year old doesn’t really know anything so far as it’s not impacted him much yet, I think we’ll only need to explain to him if I did lose all my hair as this would probably scare him. Have you said anything to your daughter yet? 
    xx

  • Hi Em, just checking in to see how you are getting on? How’s the chemo going? Are you still having the EC? How is your hair? Hope you are managing ok xxx

  • Hi Pippin, just checking in to see how you are getting on with treatment? Hope all is well xx

  • Hi I’m not too bad thanks, I have my 4th treatment which is the final EC this afternoon. Hair is still hanging on but shedding a lot, I really hope the shedding slows when I move to paclitaxel - fingers crossed!
    How are you getting on? Have you met with your oncologist yet or got a date to start treatment? 
    xx