Triple positive and concerned for recurrence and metastasis

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Kattis894
Kattis894 Member Posts: 218
edited March 2017 in HER2+ (Positive) Breast Cancer

I thought I would start this very sensitive subject since I am very concerned for a recurrence and metastasis being diagnosed with triple positive breast cancer. I guess I am rightfully very concerned but at times it just comes over me with such a frightening force I thought a thread might be a good way to find some support. I do enjoy reading the thread "looking for longtime survivors".

As my nodes were clear my onc and medical team explained they do not normally check for metastasis but I have asked for scans etc in order to at least feel calm for a short period of time, especially since I am starting to exercise and do not want to constantly wonder for example if the pain I am feeling is from exercising or if it is metastasis in my bones?

I guess you will never be a 100% certain and you can not keep scanning your body every 6 months so thought a thread would be a good idea to find others with the same constant concern and worry. It is simply impossible to know, when, if, and how. I could certainly need some advice how to cope with the uncertainty of the future. What do I look out for? How does it feel?

Somebody asked how aggressive triple positive breast cancer really is, and I keep asking the same question. (Mine grew very fast to 6,5 x 4 cm in 2 years in-between mammograms, by the time of surgery it was 2,5x2,4 cm so it shrunk a lot but was not totally gone). My Ki65 went down to 6% after surgery. Anything else that would indicate the chances of recurrences?

At the moment I am at the end of my radiation treatment and will together with Femara (10 years) also have Zoledronic Acid every 6 months for 3 years to help prevent bone metastasis as well as Herceptin until next fall.

My heart goes out to all.


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  • Denise-G
    Denise-G Member Posts: 1,777
    edited February 2017

    Chiming in to bring you some hope. What you are experiencing is normal - the fears, the anxieties, the worry. It is like learning to live peacefuly with a roaring lion in the house. The first two years from diagnosis are so hard.

    I was Triple Positive - 6 cm tumor, 9 positive nodes, very high risk. Was only able to take 3 months of Herceptin because I had a heart attack during chemo and permanent valve damage due to Herceptin. This absolutely terrified me and did for years.

    Now I am FIVE YEARS out and doing well. The fears never go away, but you learn to live with them and control them better. The minute I get a pain or a weird feeling, my thoughts go there, but I've learned to live with it, ask myself what I may have done to cause the pain before I totally panic.

    It truly does get easier the more years you have behind you. Sending you all the best!!


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  • Kimm992
    Kimm992 Member Posts: 135
    edited February 2017

    I have had the same fears as you.

    Someone on these boards once said that a good way to gauge when something is serious or not (in terms of potential recurrence) is to have a 2 week rule. If any pain, discomfort persists for 2 weeks then make an appointment with the doctor. It has helped me not to worry about all the little aches and pains that come and go. My own doctor also told me that when it's something really serious/bad it won't go away. So if you have a headache for a couple of days and then it goes away...chances are it was just a headache. Mets would continue to get worse and worse and the pain would increase from what I am told.

    I also remember my MO telling me how great they are at treating this stuff now and that most people go on to do just fine.

    It is hard to admit that we are not in control of things. It has helped me to tell myself that there is no point in worrying about something that may never happen...because it is such a waste. Imagine I did have a recurrence...would worrying have done anything to prevent it?? No! In fact, it would have robbed me of all the awesome days I could be having right?

    Try to just focus on the here and now. You are okay now...live and laugh and enjoy.

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  • Kattis894
    Kattis894 Member Posts: 218
    edited February 2017

    Thank you for your replies and advice. I understand it will get easier over time (if no recurrences happen). I also heard that the 2 first years are the most difficult to get threw. Well, there is so much in the aftermath of this to handle both physical and psychological and many different ways to try to deal with it.

    Everyone is constantly telling me how aggressive the ER+ status is. Yes I know it is and understand the protein etc but I am not sure of the word "aggressive". Some make it threw some do not. Recurrences happens more frequently to ER+ status because the cancer is "aggressive". Er+ status spread much faster etc. Still I do not understand the word "aggressive". Percentage is just a number and nothing to hold on to. There is no rime or reason why. Science has no answer. Some small tumors end up being deadly and some large not vice versa. Clear nodes is good but is no guarantee, stage is just another number it seems and can change at any time etc You just have to pray to "luck" let me be the "lucky one" I guess everyone here is still making it threw because we are pretty much still on here, writing ..:) how many didn´t? Anyway, this is why I hate this illness so much, science don´t know. No one does. We are all living in a limbo and it just becomes apparent when struck with this illness. I am praying for a cure.

    We all live in the unknown healthy or not, this becomes sort of an elevated unknown that is on your mind for at least a couple of years after diagnosis pretty much constantly. It is a form of trauma and should be treated and respected as such.

    Isolation being a big thing for me, dropping out of life. Heading for the psychiatrist to get some kind of band aid to carry me but ultimately it is up to me alone to get out of bed and live life day by day.

    I agree, there is not point of worrying about something that did not happen. Problem is I do..:)

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  • Kattis894
    Kattis894 Member Posts: 218
    edited March 2017

    Checking out your blogg Denise. Thank you for your replies. I think for this group it is especially difficult with fear due to the cancer growing so fast. I had my first real scare the other week with a lump right above my scar and it was checked but turned out to be a lump of fat, but it just tells me how incredibly scary this ride will be for as long as it will last. Now I am experiencing some head ache but since I freak out about everything I am telling myself it is probably nothing as well. However if it persists I will tell my doctor again in a few weeks.

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  • Suburbs
    Suburbs Member Posts: 429
    edited March 2017

    hi kattis894. Very happy to see you posting to the board an update. I hope the headache is a temporary side effect of dealing with an incredibly stressful situation last week. I am no where near your point in my plan, but share exactly the same thoughts and concerns that you have regarding recurrence. It seems only time and focusing energy on some other aspect of fighting the disease or anything else is the only way to diminish the dark thoughts or at least manage them.


    I marvel at the survivors here that keep pushing forward, stay active in the community and handle the dark side with grace. I read their posts and they give me a glimpse of that light at the end of the tunnel. I am pretty wrapped up in my list of fears and concerns for the next steps. Slowly though, through the words of others further down the road, I see that things do get better. It's hard to acknowledge when you are in the heat of the battle. I have a sign on my refrigerator - PCR and NED. I'm adding new normal to that list. NN will be my code for staying with the light and avoiding the rabbit hole. Thanks for saying out loud the same thoughts I am thinking.
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  • Kattis894
    Kattis894 Member Posts: 218
    edited March 2017

    What I have heard is that the fear grows as you approach the end of your treatment and I can totally relate to that. During chemo and radiation I was brave and just went with the punches, now doing scans etc and having less contact with the hospital I have more time to "dwell" and have time to ask myself; What have I been going threw the past year? Well, my brain is for sure not functioning as it should. Been looking for some lost paper work from my bank all day with no success and just saying to myself I can not handle anything at the moment more than watching a favourite television show, a movie or going for a short walk. I am getting a bit of help from one of my brothers with paying of bills etc as I realise it is all too much at the moment. Feel a need to prepare myself for the worst but hope for the best. I do have a need of writing a testament and sort of planning my own funeral in case of a sudden change. This makes me even more confused. Still having a headache but I think it is pretty normal after looking for lost paper work without finding them all day. I do see the need for a period of total rehabilitation and there is no way I would be able to return to my old job.

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  • Robin1234
    Robin1234 Member Posts: 45
    edited March 2017

    Hi Ladies it's been a long few weeks but I went to my 2nd MO and she said no chemo or Herceptin to just do tamoxifen and Zoladex so I went with her she wanted me to do. Next day she called me say she has weekly meeting and she brough my case up and her 2 colleagues told her that they would of had me do taxol and herceptin. So i called her back and she is out of the country until this Monday to see what is she thinking now. I went back to my 1 MO and got my bloodwork done and echocardiogram and everything is normal, port in this Wednesday and Taxol and herceptin next friday. Went to chemo class today and scared. I'm not a persin that takes meds at all so all this pre meds and the meds they are going to give me is causes me anxiety. Can you guys tell me your experience. Thank you

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited March 2017

    kattis - one of the side effects of continued Herceptin is a low grade headache that can be present much of the time - I definitely had this, particularly the further into Herceptin only treatment I went. It went away once I was done. Stress can certainly contribute, and I am sorry that you have had more than your share lately.

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  • Kattis894
    Kattis894 Member Posts: 218
    edited March 2017

    Thank you for your reply SpecialK. Yes headache is my latest worry but your answer makes sense. The hole experience is a trauma to be honest and it seems it is worse now after a lot of treatment has been done. Hear it is pretty normal to feel the way I do at the moment. I am now waiting for results both for bones, lungs and rest of body except my brain that was not checked. The hospital will not do that as of now. So hoping for good answers in a couple of weeks when I see my Onc again.

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  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited March 2017

    Hi Kattis!

    I'm sorry that treatment and cancer have been so traumatic for you, especially as it has disrupted your relationship with your brother. Praying for you, that the scans show that you have NED (no evidence of disease). ((Hugs))

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  • Kattis894
    Kattis894 Member Posts: 218
    edited March 2017

    Yes, my brother is most likely panicked but it is too much to think about that as well. There is a forum here for just that how family and friends take this which has been helpful and here is a link I thought was a good read

    http://www.huffingtonpost.com/jeff-tomczek/cancer-...;src=sp&comm_ref=false


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  • Kattis894
    Kattis894 Member Posts: 218
    edited March 2017

    Special K I also read that a slight headache can be due to the hormon treatment as well.

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  • Nothappy
    Nothappy Member Posts: 11
    edited March 2017

    I think what's more important is the Stage of the cancer. Nowadays we have stuff like herceptin, so it's not so much whether it's triple positive or aggressive that makes a bigger difference. I believe that if some of your cancer was "inoperable" that it what puts you at risk a higher risk for reoccurrance...because after chemo you are just in remission esp. ...if all your cancer was not able to be cut out. Most stage 1 and 2 and 3a are pretty safe for the most part. it's stage 3bc and 4 that really need to worry and get proactive.

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