Just been diagnosed with breast cancer for the 2nd time!!!

Hi, just needed to talk to like minded people and people who can advise and support. I am 40 and have just been diagnosed with breast cancer for the second time. Almost ten years ago to the day. 

My cancer is very hormone driven. Last time I had a lumpectomy, chemo and radio. I have also been on Tamoxifen for last ten years.

I am unsure yet if it is a reoccurrence, secondary or new. But it's the same type, and side. My Dr has said I can't have radio again and possibly no chemo?! I presumed chemo would have been a given.

I have to have a lot of genetic testing, a mastectomy and hormone treatment. Just had CT scan to see if it's anywhere else. 

Anybody else been in a similar situation or can offer some advice xc

Thanks 

  • Hi Rehab2, 

    I am so sorry to hear you have been diagnosed with breast cancer for the second time almost 10 years later. It must be a time of confusion and uncertainty for you at the moment as you know you are dealing with the same type of cancer on the same side but you are still unsure as to whether it is a reoccurrence, secondary or something new. Has the doctor explained to you why they think you can't have radiotherapy again and perhaps no chemotherapy either? It must all be a bit unsettling for you but it sounds like they are being thorough in their investigations and it's good that they are doing all this genetic testing. Hopefully you will get a better idea soon as to what your treatment options might be. 

    Keeping everything crossed for you for the results of your CT scan and if there is anything you want to ask our cancer nurses, feel free to get in touch with them on this free number 0808 800 4040 - their helpline is open Monday to Friday from 9am to 5pm. 

    I hope that you will hear from other members of our community who have been in a similar situation and were diagnosed with breast cancer a second time. 

    Best wishes, 

    Lucie, Cancer Chat Moderator

  • Hi Rehab2,

    I am so sorry to hear of your concerns and know just how worrying it is to have cancer for a second time, without having all of the details as yet. I had a lumpectomy first time around, but had a second cancer within less than a year. This was the same type of cancer - pure mucinous and was a new primary. I had a double mastectomy, as pre-cancerous lesions were also found in my other breast, 6 months after my initial surgery. I then took Letrozole for 6½ years (I was 60 at the time).

    I was terrified while waiting for the results, as I had lost my mum to secondary breast cancer and thought that the same was about to happen to me. Fortunately that was all 15 years ago and I am still keeping busy and having a fulfilling life. If you've already had chemo and radiotherapy, don't worry if you can't have these again. I didn't have either. My results were hormone driven too and I only ever had hormone treatment. Can I ask what type and stage your first diagnosis was? I sincerely hope that your CT doesn't show up anything untoward. Your care team are obviously doing all of the necessary tests, which I am glad to see. I know that this additional waiting is extremely frustrating, but it is worth it in the long run.

    Here's hoping that you get all of your results through soon and then you can start to move forward. 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 new to this group I was hoping Rehab 2 if you got a new information on your diagnoses. Everything you Hane deceive is exactly the same as me so far. Would appreciate help or advice too xx

  • Hi MgTrophy,

    A very warm welcome to our forum. Can you tell us a little about what type and stage of cancer you had  last time and how much you have discovered about this second bout so far? When were you first diagnosed and what treatment did you have? This would help us to give you some help and support. Waiting on results is always one of the most difficult parts of our cancer journey.

    Please keep in touch and remember that we are always here for you.

    Kind regards,

    Jolamine xx

  • Hi there. So last time was 12 years ago. I was 34 had IDCS thank god no involvement of lymph nodes a 19mm tumour and treatment consisted of lumpectomy with chemo and radio and senital nodes removed. 

    Fast foward and went for routine mammogram got a call back as calcifications were found on the right Breast same breast as before. They did another mammogram with scans and biopsy’s. Doing this they found some swelling on my nodes they performed biospys on my breast and node area. Was told to return in a hour. Was all the same as before. Same time same room same treatment room. Was reliving that first day all over again. When I returned they told me they have found a 10mm tumour very close to the same area as I had before and it displays cancer. They had to do more detail tests now as it’s the area of calcification linking into the 10mm tumour. I then had to get more biospys done under the arm a core biopsy I believe as this is the area they want to see what’s worrying. I’m going for ct today. I feel so sick with worry. Had to tell me 14 year old over the weekend was awful. She was 2 the last time. So I was able to protect her from all this, whereas now watching her cry was heartbreaking. I have three older children who are 28 24 and 21 and they remember the last time very well. Since this I have also had 3 grandchildren who are now 10 3 and 6 months. The fact that I need to not let them see me sick now changes everything as I’m their strong nanny. My heart is broken just why me. In this past 6 days I’ve cried held it together for others been brave cry again. I don’t want to leave the safety of my own house as this makes it as a reality. I was finishing work this month to travel had trips planned was about to come me time. Worked all my life  from 11 Was ready to enjoy it all now I feel it’s over. And what makes it worse is I went to New York last month and all my children went last minute. Hadn’t all been together on our own no grandkids no partners in over 20 years. And deep down all I keep thinking is was this all meant to be? Were we all meant to have this one last and only time together? My head and emotions are awful right now. 
  • Oh, poor you. As you'll remember from last time, you're at that awful stage of the unknown just now. Once you get all the answers, things will begin to settle down. I hope that your CT goes well today and that you won't have to wait too long for the results. Don't worry about all those tears. Crying is a good way to relieve some of the stress that you're under. I cried buckets while I was waiting for my results. I had lost my Mum to secondary breast cancer and was convinced that I would have the same fate. That was all 15 years ago now and I'm so thankful that I'm still to the fore.

    Your 14 year old is at a difficult age to take your diagnosis in. You will find that she'll take it better, if you can be as positive as you can about your treatment prospects. I am so glad to hear that you had that lovely trip to New Yok with all of your family and I hope that you'll get other opportunities in the future.

    I was just retiring when I was diagnosed too. All of my aspirations to travel and to do all the things that I never had time to do, when I was working had to be shelved. In the event, my hubby developed so many medical conditions, that we can no longer get insurance to travel abroad, so my plans were well and truly scuppered. Life is not the same as it was pre-cancer, but I've just had to accept my lot and to make the most of my "new life".  You are fortunate that your grandchildren are living nearby and are young enough to be unaware of your diagnosis. This first year is likely to be the most difficult for you, if you have to undergo further treatment and have the exhaustion that seems to accompany this. However, I'm sure that you'll find some spurts of energy to see them and to make some precious memories together. Fortunately, cancer does not preclude us from getting travel insurance, so you will get the opportunity to travel.

    Please keep in touch and let us know how your CT scan goes. We are always here for you.

    Kind regards,

    Jolamine xx

  • Thank you all so much for replying, and apologies for the late reply.

    It has been a very hectic few weeks. From I got diagnosed to now which is about 3 weeks, I have had a double mastectomy which is tough but only option I had. I will reconstruction in a few months.

    I found out today that margins are clear and so we're my lymph nodes which is amazing. Awaiting to here about her2 tests to decide next steps.

    Last time I had everything and I'm struggling with idea of no radio or chemo as I feel it kills off any stray cells 

    I can't have radio again and unlikely to have chemo as I'm very strong hormone positive 

    They have said chemo won't hit them cells so hormone treatment of some type. I fear for another reoccurrence in ten years as I'm forty and have had it twice. But currently happy with what is happening xxx

  • Hi Rehab,

    I had a double mastectomy second time around. I was advised to have radiotherapy first time,  but didn't, due to various procedural delays. I have only had hormone therapy for both bouts (Tamoxifen and Letrozole). After I had the double mastectomy, I was advised that everything had been removed, so there was no need for additional medication or treatment. Maybe you're in the same boat now? I suspect that you can still have immunotherapy, if you need it. Try not to panic and place your faith in your care team - they know what they are doing. I am delighted to hear that you have clear margins and no sign of any lymph node involvement. This is great news.

    Keep in touch.

    Jolamine xx

  • Thank you for the reply. Yea, it seems like tablets or injections moving forward. I've already done Tamoxifen so it won't be it. I suppose it's 9 years since my initial diagnosis and I don't want to be here again in another ten years!!

  • Hi Rehab,

    None of us want to see a recurrence, but sadly that's out with our control. The sad thing is that,` after 9 years you feel that you are learning to live with your diagnosis, then it comes back to bite you again. This tends to dent our confidence all over again. All we can do is to accept any treatment offered and hope - hope had got me a long way so far!

    Jolamine xx