Forum Discussion

msowl's avatar
msowl
Member
14 years ago

didn't think it could happen again!

 

I am new to this site. I have already been through this (cancer) all before, but didn't feel the need to share with people I didn't know. I had a friend who had gone through the experience, and she was "enough" for me.  I felt too that the BC hadn't really happened to me but to someone else. Denial I have been told! 

Now apparently I am a veteran as my surgeon said the other day! Not a term I am terribly comfortable with at all! Having thought I was on top of it too...

In December of 2009 I found a lump in my RIGHT breast. After visiting the doctor to see what he thought, I was sent off for mammogram and ultrasound. Results were negative, but because my Mother had had BC, I was sent to the local hospital for further follow-up, where I had fine needle biopsy. Negative again but follow-up was recommended every 6 months. So fronted up every 6 months, had numerous mamms and US including a core biopsy...all clear. 

In April 2011 it was recommended that the lump be removed to see what it was. What a shock...it was cancer! I couldn't believe it!!!!

Had more surgery and SNB which was clear- thank goodness. Then 6 weeks radiation therapy where I suffered from unbelievalbe tiredness early on. 

I had been extremely healthy, not overweight and had heaps of energy before all this and I ended up putting on 6 kilos during treatment (and much more since!) Plus I never really felt well again.

My doctor was worried about tests not showing up my cancer especially since I have dense breasts, so I started having MRI's. Had another in January this year as part of my follow-up and although the young registrar thought she had felt something in my LEFT breast wasn't concerned as the MRI was clear. 

Something stayed in the back of my mind after this and I started checking myself. I felt the lump but tried not to be worried about it. I had been constantly putting on weight and thought it couldn't possibly be cancer because surely I would be losing it instead!! I didn't feel "well" most of the time either, but knew i had been terribly stressed and put it down to that. (denial again ?)Two friends kept at me after I had shared that I had this lump and I eventually went to my new GP. She sent me straight off for testing (hah I thought that won't do any good!)

The mammo didn't show anything, but the US did and the recommendation then was to have a biopsy. It showed cancer! Oh boy...here we go again I thought....but I didn't really know how to feel about it. Yes I was sort of upset but last year had been a good outcome over all and this would be the same again..........

Had my surgery last Wednesday, WLE and SNB. Have been told that the nodes were clear so that's good, but the doctor was concerned when she visited me before my discharge, as was the breast care nurse and now I need to wait until Thursday for pathology results and what comes next. 

The feelings I have now though are so much more - I am worrying more and wondering what this means. I am confused. One minute I'm fine and it's all just another day, the next I think I've been given a death sentence! I know I need to just wait for Thursday but it's hard to do. I need to communicate with others this time around and after reading some of the posts believe this will help. We are not alone and we don't have to be strong and cope alone....I don't feel very strong right now. Don't want to be maudlin either, but it's hard when my friend who helped so much last time is just so super positive. That makes me feel worse! Like I'm being a wuss!

So thankyou for giving me the chance to share my story. 

 

9 Replies

  • TonyaM's avatar
    TonyaM
    Member
    14 years ago

    I have just read about your son and one of my daughters had a similar diagnosis around that 20yrs mark. She used to get very annoyed with visitors coming and if they did so unannounced-well.......They like to be prepared and don't like surprises. I would just talk with your son and ask him what he could do- put the ball in his court so to speak.He is probably highly intelligent and can work it out.Maybe it would be a good thing to cut back visitors abit? My daughter used to go to her room alot as she is not one for socializing.She prepared by taking food in.My other daughter is the total opposite so I've come to accept and respect their individual personalities and querky ways.They are 26 and 28 now.

    I can fully understand how you've lost confidence in tests.It is so scary going for those body and bone scans.You feel sick to the stomach waiting on the results.Mine came back clear and I felt I had won the lottery.Try not to think too far ahead -the what ifs can become overwhelming.However,it's good to research and get all the facts.Loss of control and waiting are the 2 hardest things in this journey I think.Once we know what we are dealing with then we can usually get our head around it and be proactive.Each time I have found it to take about 2yrs to get some confidence back.It's still a worry but I'm able to shelve it now.Tamoxifen seems more tolerable if you are through menopause.It's been around for over 25yrs and so it's one of the safer drugs.I've been on it for 2yrs now and no problems apart from some hot flushes.Compared to chemo,it's a walk in the park so don't worry about Tamoxifen just yet. It's only natural you'd be tired as you had surgery last week so take it easy and rest up ++++.  Have you ordered "my journey kit"yet? It's great and info is straightward.All the best for tomorrow.

                                  Tonya xx

  • msowl's avatar
    msowl
    Member
    14 years ago

    Thank you Mich for the things you have said. It is hard to deal with our children(although they aren't really children)  through this. I am still trying to deal with myself and have not much energy for anything else. Feels selfish.....

    Having said that though, Matt and I have developed a much closer relationship since his diagnosis, so i will try what you have suggested. I am so sorry that your son felt it to difficult to be there for you (I guess we are not the only ones who go into denial), and that your relationship isn't a close one. You are such a strong lady to be dealing with it the way you seem to be. 

    I am sorry to hear you are having a bad day also - yes I am learning it IS ok to be down and tired and fatigued. So it MUST be ok for you too! 

    Hang in there with me! 

     

    Lots of love,

    Teresa xx

     

  • Mich_x's avatar
    Mich_x
    Member
    14 years ago

    Hi msowl

    I am so sorry to hear you are having to worry about your son because of visitors.  He must be doing it tough, poor luv.  Maybe if you have the sort of relationship where you can sit down with him and talk about having all the visitors and ask him how he feels about that and about you going through this journey again.......  He probably felt he was going to be there to support you through this journey which gave him a purpose but now all these people are coming and taking that away from him. You are lucky to have so much support but as long as they are helping you and not just tiring you out which happens.  Your son will be frightened and angry and going through as many emotions as you.  I believe it is hard for us but it is even harder for our loved ones.  Hopefully you can talk with him and work it out together and let him know you need him to be there for you and be strong for you (it might be what he needs to hear) or if you can't then maybe someone else he can relate to can talk to him about it.  I might be barking up the wrong tree but just a suggestion.

    My son who is 32, married and they have lil precious toddler of their own pretty much went in to denial of the whole thing.  I hardly ever heard from him but when I did not one word was mentioned of BC or even a question of how I was going.  That was his way of dealing with the whole thing.  Him and I unfortunately have never had a strong relationship but I love him so unconditonally and I guess deep down he loves me as well just doesn't know how to show it.  He has never had a true diagnosis but I think he has struggled with Aspergers (spelling) throughout his whole life and still does to this day.

    If it makes you feel any better I not having a very good day today either, I can't cope with having no energy, the fatigue is killing me.  I know I will get back there but the waiting to be well is tough.  I tell myself it is okay to be down and tired and fatigued. 

    The main thing that has helped me every day to get through this journey is that I tell myself that everything that is going on is only temporary.  It does get better and it will for you as well.

    Just take it day by day or even hour by hour if you have to.  That is what I do. 

    Freinds do manage to give you a boost most of the time don't they. 

    Chin up chicken, we are here for you.

    Mich xoxo

  • msowl's avatar
    msowl
    Member
    14 years ago

    Hi Tonya,

    I couldn't believe what you have been through! You poor darling. Who would think after 7 years it could possibly happen again! 

    Do understand the feelings of anger, not that I have had too much anger as yet. I am sure I will though, especially the more I think of how will they possibly ever be able to tell me future testing will really be believable! The MRI I had in January didn't pick up this latest cancer and if it does come back, deeper and further from the surface, what then? I so get what you mean about losing confidence in our bodies. That is just so true. I know it may come to a point where I may be advised to have a bilateral mastectomy because of the problems I seem to present with testing.

    I am worrying about results from the scans and really hope mine come back clear, (although will I trust them?). How did you go with Tamoxifen? I worry about the side effects of that drug and think I would prefer an aromatase one instead. Will do more research I think. 

    My tiredness is so much worse today so I am just going to have to take it easy. What's it going to be like when I go through chemo? I am scared about that - don't really know why. How long before you feel in control again? Have more friends visiting this afternoon - I am happy they are coming but don't know if I'm really up to it. 

    The support and caring on this site is different from the support from family and friends, but is in some ways much more special. We don't have to feel guilty or weak for the way we are feeling and you totally understand. Such an important and necessary thing for right now.

    Thank you so much! Sending you a hug in return.....

    T. xx

  • msowl's avatar
    msowl
    Member
    14 years ago

    So good to hear from you Mich, but not good to hear what you have been through!

    To know that I have connected with someone else who went through something similar (although I was very lucky and they got clear margins), is a settling feeling if that's makes sense? I know being able to share with you and others is going to give me so much strength.

    There is the ongoing worry of this horrible illness. How does one ever really relax and truly know it is finally at bay? Being between the scans and not knowing what else they may find.....I feel so helpless. There is just nothing at all that I can do about it. The fear factor for sure!

    Yes - I am having a fairly bad day today. So incredibly tired and a bit fragile. Hard to deal with for sure when you are the type of person to want to feel in control! Have had so much love from people in my life, but also stuff I don't know how to deal with. My oldest son, who has recently shown more mature insight, ( he is 22 ) upset me greatly this weekend when he changed suddenly. I have had visitors everyday and he has withdrawn  into himself and has become quite angry about the imposition of visitors. They are coming to spend time with me to show me their love and support and most times it does brighten my day and makes me feel better. It's going to keep happening too (until they all get so sick of it!..LOL), and trying to deal with his feelings is hard. I care about his emotional heath as he has been fighting Major Depression and Gross Anxiety Disorder and was really starting to get on top of it. This may tip him backwards? Any ideas how I should deal with this?

    I will get through today as I will get through all the others days this journey will now throw at me -  as so many others have gone through their journeys before me,  and I will try to retain my sense of humour and have fun along the way. My ex-husband (who is still a good friend) told me I would be a much stronger woman at the other end. Not sure about that!

    Thank you for being there to share and let me vent. 

    I appreciate you...

    T. xx

  • Mich_x's avatar
    Mich_x
    Member
    14 years ago

    Hi msowl

    I am happy to share with you on a road we definitely did not ask to be on.  You have already travelled a long and bumpy road you poor thing. 

    I also was informed before leaving the hospital after my WLE and SNB that my nodes were clear and it wasn't until I went back for the follow up appointment a few weeks after christmas that I was told "sorry they were wrong and that two of my nodes had micrometastes in them" plus tumour was much bigger than originally thought plus they were unable to get a full clearance around the tumour as it was too close to the chest wall ................I can tell you that major shock set in then and I went thru numerous emotions but still to this day have done minimal crying and asking as to why me.  There is no saying that still might not happen as I don't feel I am emotionally over my journey by a long way.  All I have done through the journey so far is I have been in survival mode and that is slowly reaching an end and then I will probably take a breath and look back over the last 9 1/2  months and assess what has happened to me and my loved ones. 

    The plan of attack for me once I was told my shocking unexpected news was a total axillary clearance where they removed another 17 nodes (which were all clear they said), 6 cycles of chemo 3 x FEC and 3 taxotere every 3 weeks and then after a 4 week break from the chemo I went on to 7 weeks (35 treatments) of radiotherapy plus I have recently started on an aramitose inhibitor (Femara) for the next 5 years.  I have only recently finished my last radiotherapy on 5/9 and I am due to go back for my first follow up bilateral mammogram early October. 

    So my life has been a whirlwind recently but so has yours.

    Keep in touch with us, we are here for you and we understand where you are coming from.  You will go through so many different emotions.  I know I lived in denial for a very long time but got brought back to earth with a thud.  I like you have read and read and read as much information as I can about BC and I feel it has helped me to stay in control.  I have found that I would be lost without my pink sisters on this website though.  I am just recovering from 3 weeks of bronchial pneumonia which I got prior to finishing my radiotherapy and I have missed being in contact with everyone on a daily basis but I am back and hopefully my fatigue will pass and I can continue to be a part of such a wonderful website and beautiful group of ladies.

    I hope we can help you through your journey as well.  Good luck, chat soon.

    Mich xoxoxo

  • msowl's avatar
    msowl
    Member
    14 years ago

    Would never have thought I had much courage nor wisdom. Thankyou for giving me something to feel positive about this whole experience. As women we are constantly called upon to deal with so much in our lives, usually in terms of others though and when it directly relates to us it is harder. My thankfullness this time around is that as women we are able to share with each other - it does help and lessens the load.

  • bmc's avatar
    bmc
    Member
    14 years ago

    Hello ms owl. Two things came to mind when I read your post: you have courage and wisdom that many others don't have - if you like , these are the "gifts" that this path that has been chosen for us have given you. And being upset, emotional, scared, confused, etc, etc, are all OK reactions to what is happening.  Best wishes and reach out  to this site as much as you need to keep empowered.

  • such_is_life's avatar
    such_is_life
    Member
    14 years ago

    Hi just wanted to say Hi, and that I cant believe you have to go through this all again, I have my fingers crossed for you results on Thursday and I believe you should be able to  feel like a wuss if you want to, you have been through enough xx