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janinaj's avatar
janinaj
Member
12 years ago

My Treatment Plan Freak out

hi everyone,

 

So, I now have my yucky outlook for the next few months and years to rid myself of cancer once and for all.  I do feel blessed that it is curative, so I am thankful to the universe for this.  At the same time I am absolutely petrified beyond belief about the number of needles, the amount of pain and agony and the nausea in my immediate future.  It's becoming a bit much at the moment and while friends are are being supportive, there is only so much can do for someone in this situation.

 

The plan so far -

 

Due to the recent finding of some concerning clusters of cells in my uterus I will start off the new year with a hysteroscopy, D&C.  This will determine if I have more cancer in the lining of my uterus which hasn't been picked up in scans etc.  following this will be some minor surgery to prepare for chemo - zoladex and possibly a port-a-cath but the nurse has been pushing back a lot on me getting the port because I apparently have "such lovely veins".  Never mind my irrational fear of needles and everything else! Argh.  ***Any advice here?  Am I being silly - has anyone breezed through without a port or picc line?

 

Chemo

 

I have two options for chemo.

 

The two types offered to me are FEC&D 18 weeks weeks or AC &T For 24 weeks.

 

FECD seems to be well known as the most evil treatment out there? But I dont know much about AC&T.  As I understand it, it's a relatively new treatment because there isn't a lot of data to work with, but from all accounts, some people have found it more manageable than FECD.

 

***I'm leaning towards the AC &T.  What do you guys think?

 

Radiation

 

Following chemo I will have 25 treatments of radiation over 5weeks to the chest and neck area where the chemo is most likely to have spread.  By this time I think I will find radiation pleasant. That is provided side effects are minimal.  I'll probably come back to everyone for advice on preparing for radiation closer to the time.

 

Hormone Therapy

 

Following chemo and Radio I will be on Taximofen for five years provided my body accepts it.  Some people don't go very well with it I understand but it's the thing that will really improve my survival rate I am told.  

 

Otherwise, I have been told that I am unlikely to have children as a result of this.  It's been a big blow to me.  It's very complicated but the short and long if it  so that I have very few ovaries, lazy ones, endometrial hyperplasia and most especially time is against me.  I would have to be creating life in the next two weeks when I haven't actually ovulated for a year and I can't be induced because of the chemo...  Just Sucks.

 

Thanks,

 

Jx

17 Replies

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  • Deanne's avatar
    Deanne
    Member
    12 years ago
    Don't you love how the medicos give us choices to make? I would be asking more questions as to the difference between these two Chemo types. If they make no difference to the chance of recurrence then I guess you go for the one that might be easier on the body. I had 3 x FEC and 3x D. FEC was very manageable and other than tiredness and mild nausea it was ok. Docetaxel was tough for me but others have been known to breeze through it, you just can't predict. Only having 6 infusions to get through, the chemo experts were reluctant to let me have a picc or port. I did manage to get through it without too many problems but felt a bit like a pincushion towards the end. I really concentrated on drinking lots of water and keeping active as this helps with keeping your veins easier to access. I have not heard anyone regretting having a port though! I had 25 radiotherapy treatments to the chest, neck and underarm. It was certainly easier then the chemo but you do get tired at the end and I had some skin peel and it is still quite sore in deep near my ribs (finished 6 weeks ago). I have been on tamoxifen for just over a month so far, and have been lucky with not too many side effects. It did give me very mild nausea for the first few days but other than that I am just a bit more stiff when I first get up. I am taking it at night with dinner as it is important to take it with food. I can only imagine how devastating it must be to be confronted with not being able to have children. Coping with BC is enough in itself without additional complications. It is tough trying to make decisions and of course difficult to compare because of individual differences. Good luck with gathering as much info as you can to help with this. Take care and hope all goes as well as possible for you. Deanne xxx
  • Deanne's avatar
    Deanne
    Member
    12 years ago
    Don't you love how the medicos give us choices to make? I would be asking more questions as to the difference between these two Chemo types. If they make no difference to the chance of recurrence then I guess you go for the one that might be easier on the body. I had 3 x FEC and 3x D. FEC was very manageable and other than tiredness and mild nausea it was ok. Docetaxel was tough for me but others have been known to breeze through it, you just can't predict. Only having 6 infusions to get through, the chemo experts were reluctant to let me have a picc or port. I did manage to get through it without too many problems but felt a bit like a pincushion towards the end. I really concentrated on drinking lots of water and keeping active as this helps with keeping your veins easier to access. I have not heard anyone regretting having a port though! I had 25 radiotherapy treatments to the chest, neck and underarm. It was certainly easier then the chemo but you do get tired at the end and I had some skin peel and it is still quite sore in deep near my ribs (finished 6 weeks ago). I have been on tamoxifen for just over a month so far, and have been lucky with not too many side effects. It did give me very mild nausea for the first few days but other than that I am just a bit more stiff when I first get up. I am taking it at night with dinner as it is important to take it with food. I can only imagine how devastating it must be to be confronted with not being able to have children. Coping with BC is enough in itself without additional complications. It is tough trying to make decisions and of course difficult to compare because of individual differences. Good luck with gathering as much info as you can to help with this. Take care and hope all goes as well as possible for you. Deanne xxx
  • mum2jj's avatar
    mum2jj
    Member
    12 years ago
    Hi Janina, I can't give you too much advice re chemo as I think the names of treatment have changed a bit. I was initially started on TAC in 2009 but had a bad reaction to the taxotare and so was switched to FEC. even though the FEC was not too bad nausea wise it did make me tired for a week or so after, i also struggled mentally whilst on it, especially the first week after. My anxiety soared (tend to be a bit anxious anyway). I had brilliant veins HOWEVER the chemo drugs absolutely trashed them, and four years later they are no better which has caused all sets of problems re future blood tests etc. When I had my recurrence in 2011 I was put back on TAC, which terrified me, however was given lots of antihistamines and was fine. As my veins were so trashed from the chemo two years prior had no option but to,get a port. It sat just under my collar bone. OMG why did I not get one previously. It was fantastic!!! No dramas with my veins, and even though a normal pathology nurse could not access it I could have blood tests taken from it at the oncology ward prior to chemo. It was just brilliant. I actually kept it for two years after my chemo finished as I knew I wanted a reconstruction and figured I could have it out during that op. That has actually just happened two weeks ago. A port sits under your skin, so it's not like you have a foreign body sticking out of you. It is just a bit of a bump under your skin. I just used to wear clothes that covered it if I could. The only thing I had to do for the two years before it was finally removed was pop in and have it flushed once every 6 weeks which took only a matter of minutes. I was lucky as my port was not painful at all. Radiation is a walk in the park after chemo I unfortunately can't comment on hormone treatment as I was triple negative. I know it is not without side effects, but a big plus is it helps prevent recurrence which is something we are all scared of ( especially me as did have one). I am so very sorry about your last piece of news. I can only imagine how devastating not being able to have kids is for you. I suppose you have asked plenty of questions about future fertility, IVF etc? On this note I can only send you a big hug. It is so much to take in. Hopefully there may be someone else on this site who may be able to answer some questions in this regard. Hugs Paula
  • mum2jj's avatar
    mum2jj
    Member
    12 years ago
    Hi Janina, I can't give you too much advice re chemo as I think the names of treatment have changed a bit. I was initially started on TAC in 2009 but had a bad reaction to the taxotare and so was switched to FEC. even though the FEC was not too bad nausea wise it did make me tired for a week or so after, i also struggled mentally whilst on it, especially the first week after. My anxiety soared (tend to be a bit anxious anyway). I had brilliant veins HOWEVER the chemo drugs absolutely trashed them, and four years later they are no better which has caused all sets of problems re future blood tests etc. When I had my recurrence in 2011 I was put back on TAC, which terrified me, however was given lots of antihistamines and was fine. As my veins were so trashed from the chemo two years prior had no option but to,get a port. It sat just under my collar bone. OMG why did I not get one previously. It was fantastic!!! No dramas with my veins, and even though a normal pathology nurse could not access it I could have blood tests taken from it at the oncology ward prior to chemo. It was just brilliant. I actually kept it for two years after my chemo finished as I knew I wanted a reconstruction and figured I could have it out during that op. That has actually just happened two weeks ago. A port sits under your skin, so it's not like you have a foreign body sticking out of you. It is just a bit of a bump under your skin. I just used to wear clothes that covered it if I could. The only thing I had to do for the two years before it was finally removed was pop in and have it flushed once every 6 weeks which took only a matter of minutes. I was lucky as my port was not painful at all. Radiation is a walk in the park after chemo I unfortunately can't comment on hormone treatment as I was triple negative. I know it is not without side effects, but a big plus is it helps prevent recurrence which is something we are all scared of ( especially me as did have one). I am so very sorry about your last piece of news. I can only imagine how devastating not being able to have kids is for you. I suppose you have asked plenty of questions about future fertility, IVF etc? On this note I can only send you a big hug. It is so much to take in. Hopefully there may be someone else on this site who may be able to answer some questions in this regard. Hugs Paula
  • Cherylek's avatar
    Cherylek
    Member
    12 years ago
    Ok, first veins-chemo trashes your veins and even though at times I hate my port it certainly cuts down the trauma of finding and using a vein then the bruising afterwards. I had AC x 4 + 12 Taxol from January to June this year. Once you get past the first chemo and fear of the unknown and the AC the Taxol is a lot easier to handle. I had 30 rads over six weeks and other than the daily grind of attending appointments it went really well but everyone is different. I'm about to do Herceptin 13 of 18 on Christmas Eve and even though I had planned to have my port out this month because of the pain and discomfort I decided to grit my teeth as it were and continue on as soon as I have a needle back in my veins I bruise again. If you have any questions that I can help with please ask. Regards Cheryle :)
  • Cherylek's avatar
    Cherylek
    Member
    12 years ago
    Ok, first veins-chemo trashes your veins and even though at times I hate my port it certainly cuts down the trauma of finding and using a vein then the bruising afterwards. I had AC x 4 + 12 Taxol from January to June this year. Once you get past the first chemo and fear of the unknown and the AC the Taxol is a lot easier to handle. I had 30 rads over six weeks and other than the daily grind of attending appointments it went really well but everyone is different. I'm about to do Herceptin 13 of 18 on Christmas Eve and even though I had planned to have my port out this month because of the pain and discomfort I decided to grit my teeth as it were and continue on as soon as I have a needle back in my veins I bruise again. If you have any questions that I can help with please ask. Regards Cheryle :)
  • Cherylek's avatar
    Cherylek
    Member
    12 years ago
    Ok, first veins-chemo trashes your veins and even though at times I hate my port it certainly cuts down the trauma of finding and using a vein then the bruising afterwards. I had AC x 4 + 12 Taxol from January to June this year. Once you get past the first chemo and fear of the unknown and the AC the Taxol is a lot easier to handle. I had 30 rads over six weeks and other than the daily grind of attending appointments it went really well but everyone is different. I'm about to do Herceptin 13 of 18 on Christmas Eve and even though I had planned to have my port out this month because of the pain and discomfort I decided to grit my teeth as it were and continue on as soon as I have a needle back in my veins I bruise again. If you have any questions that I can help with please ask. Regards Cheryle :)
  • Hazel_M's avatar
    Hazel_M
    Member
    12 years ago

    Can't blame you for freaking out, it must seem daunting. You will find this site helpful and the ladies will be very supportive. I'm not completely knowledgable on all chemo, I am having FEC + D over 18 weeks, followed by radium and then hormone treatment. I have had 2 doses of FEC so far, I haven't had a lot of trouble, hair is gone, mouth is sore but I haven't had any nausea so far. Just basically very tired. Everyone is different and it's usually wait and see and take one day a time. I was terrified when they said I needed chemo, but if it gives you a better chance for the future, it's a no brainer. I had to make a decision on which chemo plan, very difficult. I went with whatever would give me the least regrets down the track, should something reoccur, I wanted to look back and say I did everything I could to prevent this. Whatever decision you make, be happy with it, and you will make it through this ordeal. I'm really sorry about you not being able to have children. It's all a little unfair. One day at a time is the way to go. Best wishes for your treatment, I hope it all goes well,

    Hazel xx

  • Hazel_M's avatar
    Hazel_M
    Member
    12 years ago

    Can't blame you for freaking out, it must seem daunting. You will find this site helpful and the ladies will be very supportive. I'm not completely knowledgable on all chemo, I am having FEC + D over 18 weeks, followed by radium and then hormone treatment. I have had 2 doses of FEC so far, I haven't had a lot of trouble, hair is gone, mouth is sore but I haven't had any nausea so far. Just basically very tired. Everyone is different and it's usually wait and see and take one day a time. I was terrified when they said I needed chemo, but if it gives you a better chance for the future, it's a no brainer. I had to make a decision on which chemo plan, very difficult. I went with whatever would give me the least regrets down the track, should something reoccur, I wanted to look back and say I did everything I could to prevent this. Whatever decision you make, be happy with it, and you will make it through this ordeal. I'm really sorry about you not being able to have children. It's all a little unfair. One day at a time is the way to go. Best wishes for your treatment, I hope it all goes well,

    Hazel xx