I feel so alone..been told I have HER2+ breast cancer & DCIS

Hi everyone, I've been lurking in the background until I had my diagnosis yesterday but had a feeling I would be reaching out eventually. 

 

I was told yesterday over the phone that I have HER2+ breast cancer and also DCIS so I'm looking at a mastectomy and chemo but they need to decide what order to start treatment. There is only so much they can tell you over the phone but I can't help but feel it was all such negative news with the words aggressive, waiting list for oncology etc being used and I'm really really struggling. 

 

I am 39 and have two children, 6 and 11. I've never felt so alone. I feel like because they used the word aggressive that it's literally spreading already and my days are numbered.

  • Hi Han,

    It is hard to remember eyerything that is said in any type of consultation, especially when the bad news tensto knock you for 6. I always take someone with me to my appointments. I also take 2 sets of questions. I keep one and give the other to whoever accompanies me - usually hubby. As I ask the questions, he writes down the answers. We have found this to be very helpful over the years.

    Did you get your phone call on 27th and do you know the order of your treatment?

    It would certainly be well worth talking to Macmillan, as I am sure that you will qualify for some benefit.

    Kind regards,

    Jolamine xx

     

  • Hi, I just wanted to reply to your post and hopefully give you some hope :)

    I was dx with HER2+  grade 3 stage 2 breast cancer with 7 nodes affected in 2007 at 50yrs. I had 2 WLE 6 Chemo (3 fec 3 tax) 5 wks radiotherapy and 12 months Herceptin. It was no walk in the park but got through it and 16yrs later still clear of BC. I sincerely hope your treatment goes well and hope you make a full recovery.

    Good Luck. Angie x

     

     

     

     

     

     

     

  • Hi Angie,

    A very warm welcome to our forum. Thank you for joining in. It is so helpful for those at the beginning of their cancer journey, to hear some of the more positive stories from cancer survivors. Fortunately, as treatments have improved, there are a lot more of us these days, but the majority seem to merge back into their own lives and don't always come back to the forum. I myself am a survivor of 13 years, despite having had 2 bouts of breast cancer.

    I sincerely hope that all continues to go well for you.

    Kind regards,

    Jolamine xx

  • Hi Managingit,

    I am so sorry to hear about the loss of your mum and of your diagnosis so soon after. This must have been very hard to come to terms with, especially over the phone.

    I have had 2 bouts of breast cancer. The last one resulted in a double mastectomy. I found this procedure easier to recover from, than the lumpectomy that I had first time around. Are you planning on having reconstruction? One tip for your hospital stay is, to have nightwear that opens down the front. This is much easier to deal with, as opposed to having to lift things over your head. The same holds good for clothing, in the early days after the procedure.

    Waiting for results is always a worrying time. Once you start treatment, you will feel more positive about everything.

    I sincerely hope that all goes well for you. I am now 13 years down the line and still living a busy and fulfilling life.

    Please keep in touch and let us know how you get on. We are always here for you.

    Kind regards,

    Jolamine xx

  • I had a melanoma on my leg removed 2014, caught it early stage 1A so just had surgery. I came on here because I'm having trouble down below ( itching burning dryness and swelling ) i think it is Vaginal Atrophy ( due to lack of estrogen) but my symptoms also match Vulval Cancer so I've made an app to see the gp. I have been reading up on topical estrogen ie Vagifem and that it is safe for women with history of BC to take so if there's nothing sinister  going on down there I am going to ask about vagifem because these symptoms are affecting my everyday life. Men don't know there born lol...x

     

  • Hi Angie,

    I am sorry to hear that you are having trouble down below. This can be so uncomfortable and I'm sure that your GP should be able to prescribe something to help. It certainly sounds as if Vagifem might be worth a try, if all else fails. How soon is your appointment?

    You have done the right thing by getting this investigated and I certainly hope that nothing untoward is found. You are so right, men don't appreciate how lucky they are!

    Please keep in touch and let us know how you get on. We are always here for you.


    Kind regards,

    Jolamine xx

  • Hi there, i'm having a masectomy in 7 weeks. 

    I just wanted to send love. I hope it all goes ok. The specialist let me record my meeting with him, i can play it back as there's things you miss when in there as you are in shock. Maybe you can ask to record the conversations.

    I was also told to cut down on meat and dairy, i don't eat a lot anyway, and have a mainly plant based diet. And exercise and hour a day. x

  • Hi Han, It's been a week or so since your last post. I hope everything is ok and you have some answers now. I just wanted to give you some hope. I was diagnosed last summer with two areas of IDC, 35mm in total, Grade 3, HER2+. I had all sorts of aches and pains and imagined my whole body was riddled with cancer and that I was not long for this world. Nine months on I am cancer-free! I had 7 cycles of chemo, targeted therapy for HER2, lumpectomy and lymph node clearance. I am about to start five days of radiotherapy to reduce the risk of recurrence. I was worried about the delays in starting treatment, but they assured me that a few weeks would not change things. Chemo was completely tolerable, and I recovered quickly from surgery. As soon as I was diagnosed I concentrated on getting as fit as possible by walking every day, and I ate healthily, got plenty of rest, etc. I'm sure it helped me cope physically and mentally. I wish you all the best with your treatment and look forward to hearing how you get on. I pray that you will have the same good results that I've had. Big hugs, Amy x

  • Hello lovely,  thank you so much for your reply and I'm so glad to hear you are doing well, I'm so pleased for you ️

    I'm not much further on, just had my MRI this morning and have my first oncology meeting next Tuesday. I literally feel like the last 2 weeks have lasted 2 years! I've had to go to my gp and ask to be put back on anti depressant medication just so I can manage my anxiety better as I want to go into this fight both mentally and physically strong and I feel anything but at the moment. 

    Just 1 more week and I may have more answers

    H x