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How do I know

VivViv Posts: 21 ✭✭


how do people know if there cancer is gone or in remission I’m really interested to know I don’t have support at all.

my treatment finished last week HER2 positive chemotherapy herceptin. Breast cancer

I don’t see an oncologist or have scans or MRIs how do people cope with the stress. I have just read on here that after being free The poor lady has bone cancer from the breast.

Comments

  • LouiseJLouiseJ Posts: 849 ✭✭✭✭✭

    @Viv

    Hi Viv,

    Lovely to hear from you again.

    I remember you saying previously how you are not having any support since you completed the treatment. I am guessing you are not in the UK?

    Are you able to arrange for a checkup, in say 3, 6 months etc?

    I would have expected your drs/oncologist/ surgeon to have been able to provide you with an updated report of how successful all of that has been. I am sure that is not unreasonable to expect.

    I am in the UK, and when I finished each part of my treatment I was given an update on where things stood. I also had breast cancer. Afterwards I had 3 monthly checkups with the oncologist, then 6 monthly, now yearly. I also have the same with my surgeon team. I also have yearly mammograms.

    I am surprised at the lack of aftercare you are receiving.

    At the very least I would be calling someone on your medical team to find out where you stand in terms of the diagnosis now. They should be able to tell you something. I would not accept 'nothing to tell you' as an answer. I think that would be unacceptable. Obviously I don't think a dr will say your are cured or anything like that, but they could say how the cancer had responded to the treatment.

    Yes I can imagine the stress of that is intense, as you still do not know how successful it has been treating the cancer.

    Please let me know how you get on if you decide to call the doctors,

    I hope you and your husband are doing well during this time,

    Take care,

    Lou x

    (p.s. I love the pic of your lovely cat 😊)

  • VivViv Posts: 21 ✭✭

    Hello

    thank you for your reply yes I am in the UK my Oncologist will ring me in six months time and that is it and I’m not sure why that is yes I ask and told its a good bye.

    I don’t know if my treatment has been a success or not I don’t know how they would know I had two area of Her2 positive and a micro dot in one node I had a lot of DCIS found on a mammogram so I had a mastectomy and it was found in my breast tissue after my fear is that it has gone into my body I know it’s very aggressive No other treatment other than chemo and herceptrin it had to be successful as it was not to treat the breast cancer but cells that mayhave travelled into my body.

    I can understand that for me it’s a waiting game It’s just hard after having support for the last year and then nothing.

    thank you for your kindness only people who have had cancer can really understand

    thank you Lou xx

  • LouiseJLouiseJ Posts: 849 ✭✭✭✭✭

    @Viv @LizzyB73

    Hi Viv,

    Oh wow, you are in the UK!?

    It's good you have an appointment with the oncologist arranged for six months time.

    From what I understand, the cancer was in the early stages and not invasive? But you had surgery and chemotherapy and the Herceptin treatment? I still think you should call the doctor to get clarification. If you had the mastectomy, then the cancer was literally removed. It sounds like there was no thought that it had become invasive, as in spread to other parts of your body, which is great.

    Liz, are there any questions Viv could ask her oncologist that may help to provide more clarification for Viv?

    Viv, you can always come here and chat, you know there are loads of us here who understand about a cancer diagnosis.

    I hope you are having a peaceful day,

    Lou xx

  • VivViv Posts: 21 ✭✭


    Thank you so much I’m told it’s a grade 3 but that was because

    I had two lots of cells which was very small and a micro dote in

    a node I don’t really understand the grading I have to say.

    i was not able to to have the chemo for some months after as

    a MRI found a very small cancer on my kidney Low grade so that saved It may not of been found otherwise until to late.

    not connected to my breast no other treatment and it

    had not spread I see the urologist every few months but I am

    clear of that.

    so you can see my worry as I had the delay in the chemo I was

    worried that the HER2 May of gone into my body I know it’s aggressive.


    thank you so much Lou not as worried now your very kind


    kind regards Viv x

  • VivViv Posts: 21 ✭✭

    Sorry it sounded a bit muddled I had my kidney removed my choice

    but I was a bit frail after to start the Chemo for the breast the problem is that I live on the Isle of Wight and all the operations The local hospital do not do the operations I needed so I had to travel

    when we first had the virus most of the Ships off the island were cancelled so I was not able to have radium the oncologist thought that a stay for 3 weeks was taking a risk with getting the virus so another concern thank you so much for your help.

    Viv xx

  • SheniSheni Posts: 1

    Hi. I’ve been going to the hospital for 2 years now. I was told I had CD8. My white cells we’re going to 11.6.

    i had no treatment or medication. Just blood tests each month

    when we went the last time we were told my blood count was 10 so didn’t need to have any more blood tests. I am worried about this. Anyone has any idea what we should do. ?

    Thank you

  • Blanka_CBlanka_C Posts: 406 Community Admin

    Hi @Sheni,

    Just wanted to welcome you to this lovely group. Everyone is very welcoming here and we have lots of great discussions, feel free to look around and join any. :)

    I cannot advise unfortunately, but I've tagged @LizzyB73, our oncology specialist nurse in this discussion, maybe she can give some general guidance? Liz, is this something you can help with?

    I hope you're keeping safe and enjoy the lovely weather.

    Best,

    Blanka x

  • LizzyB73LizzyB73 Posts: 112 Oncology Specialist Nurse

    Hi @Viv

    just wanted to see how you are and I was going to suggest that maybe you give the breast care nurses a call at the hospital. It would be routine for you to have a follow up mammogram but perhaps asking for a CT scan of chest abdo and pelvis would offer some reassurance for you, following on from your anxiety about potential spread.

    Please get in touch with me if I can help further

    Best wishes


    Liz 💕

    Liz Bradley
    Oncology Specialist Nurse | Oncology Service Manager @ Springfield Hospital
  • VivViv Posts: 21 ✭✭

    Hello Liz

    very kind of you to reply but I have had the mammogram I’m clear thank goodness I have been told that I will not have further scans or MRIs as it would be pointless It would not show if the cells had gone into my body my oncologists words I have HER2Positive+ I know it’s aggressive.

    im very depressed I don’t know if this is part of it after my treatment I’m also giddy I believe my blood pressure is to low 90/59 pluse 68

    I live on the Isle of Wight so that makes things very hard this is not going to sound good but my breast care nurses promised me that after I had my masectomy which was in Salisbury because my hospital does not preform them that they would change the dressing when I asked they told me they were to busy and my GPs nurse would do it the nurse did not want to touch it so I had to travel back to Salisbury so I don’t have a lot of faith in my nurses

    so I think it’s the GP thank you for your much needed help I think

    I have just about come to the end of my stress levels.


    kind regards Viv xx

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