Forum Discussion

Ranveig's avatar
Ranveig
Member
12 years ago

DCIS

I was diagnosed with DCIS in on July 15 and began chemotherapy almost straight away.

I feel that my quality of life has been somewhat diminshed over the last few months and not what I expected. Although the only work I have is one day per week, I have been unable to do even that, which has been disappointing.  

I have recently completed the 4th of 6 chemo treatments and am seriously considering not having the last  two treatments as the side effects have been horrendous for me and the chemo is not to avoid surgery. Surgery was always intended.  

After each of the first three treatments I threw up for days, became dehydrated and finally ended up in hospital for 4 days while I got sorted out. The 4th treatment was a new cocktail and I developed hand/foot syndrome, which resulted in blisters on soles of feet, swollen hands/fingers (couldn't lift anything, hold a pen and barely able to type).  I  have only today started to return to normal. After 10 days, my feet don't hurt and feeling is returning to fingers. I was told that I would probably have one bad week out the three between treatments but I am having all rotten weeks between treatments and haven't been physically capable fo doing anything much - not even pottering about the house!!

I am over being bald (it's been no fun when it's cold!!) and I have also noticed i feel cold on my neck so i wear a scarf around my neck most nights.

I have succeeded so far in staying positive and hoping for the best, but I do feel somewhat isolated, my friends are supportive but all have their own lives to lead and difficulties to face. I have no contact with my immediate family (3 brothers) for various reasons, which is a great shame and source of sadness for me.

My daughter is only 18 and this illness has been difficult for her to cope with and i try the best I can to make it easier for her - not always successfully I admit - we do get cranky with each other and hit out verbally.  

I hope to continue seeing the brighter side of life an getting a laugh when I can and geting through the battle for my return to the rude good health I enjoyed before 15th July.

During the course of my treatment so far, I have met two elderly people who were inspitational, one a man of 85 who had his treatments he same day as me and who suffered no side effects from chemo and who has been given the all clear from the rare form of non-hodgkins lymphoma, the second is a lady of 82 who had a mastectomy 53 years ago and who volunteers at the hospital were i have my treatment. She is amazing and just carries on regardless of injury and drops in and sees inpatients.  I feel inspired to volunteer myself and will probably do that once i have had surgery.

13 Replies

  • the skin on my hands feels and looks like it's about to split, already has on some parts of my hands, have no feeling really in tips of my fingers, will not go through this again next week, it'll be worse the 2nd time, uness of course the cocktail is changed. I so do not want chemo again, while recognising at the same tme that i may need it. once agan, thank you for the advice and words of comfort and encouragement. will post after appt tomorrow!!

    Ranveig

  • Yes please keep us posted Ranveig.  You really need them to give you an exact diagnosis.  As Jeanine said if you need chemo so be it.  I am sure you would be the first to agree you don't want that stuff if you don't need it.

    Keep us posted and good luck!

    Cheers,

    Jillian

  • Yes please keep us posted Ranveig.  You really need them to give you an exact diagnosis.  As Jeanine said if you need chemo so be it.  I am sure you would be the first to agree you don't want that stuff if you don't need it.

    Keep us posted and good luck!

    Cheers,

    Jillian

  • I found it difficult to think straight when at the oncologist's especially because I always saw her immediately before my next Chemo. Even having my husband with me we would still struggle to remember all the questions we had. Therefore we would write a list of things to ask about before each visit. This was the only way to get the answers we needed. My oncologist also wrote down the basics of my diagnosis for us as well as the statistics associated with the treatment she was recommending. This helped us to understand why each treatment was needed. We could take this info home and have referred to it many times during treatment to refresh our memories. I think it helps you to get through Chemo if you understand why you are having it and what difference it will make to your life in the future. Hope you find out more at your visit tomorrow. Deanne xx
  • firstly let me just say thank you to Lynne, Deanne, Jillian and Jeanine for your words of support. i really am hopeful that come what may, I will get be given the all clear. My difficulty has arisen because I am confused about my diagnosis, firstly it was Inflammatory BC for which treatment is chemo and all the rest then it was changed  to DCIS and I didn't know until I read the centrelink certificate from the doctor and treatment for that does not inlcude chemo - I have taken my info from all that I have read these ast few days.  Surgery has always been part of the treatment plan for me so I am expectng that to happen toward end of year and I have thought of getting second opinion but can't afford to go to another specialist. I have a review appt on thursday 24/10/13 so I will at least be asking some questions, certainly more than I have previously - no longer in shock in I suppose. will keep uou informed.

    thanks again

    Ranveig

  • firstly let me just say thank you to Lynne, Deanne, Jillian and Jeanine for your words of support. i really am hopeful that come what may, I will get be given the all clear. My difficulty has arisen because I am confused about my diagnosis, firstly it was Inflammatory BC for which treatment is chemo and all the rest then it was changed  to DCIS and I didn't know until I read the centrelink certificate from the doctor and treatment for that does not inlcude chemo - I have taken my info from all that I have read these ast few days.  Surgery has always been part of the treatment plan for me so I am expectng that to happen toward end of year and I have thought of getting second opinion but can't afford to go to another specialist. I have a review appt on thursday 24/10/13 so I will at least be asking some questions, certainly more than I have previously - no longer in shock in I suppose. will keep uou informed.

    thanks again

    Ranveig

  • Hi Ranveig, You ARE having a terrible time of it! I feel so sorry for you, especially as you don't seem to have much support so can't vent! Is there a support group near you? I was so very lonely until our group got together and I look forward to catching up with everyone each month or so. There must be one near you somewhere and I strongly recommend you get in touch with them. What is your post code as someone might read your post who loves close by?

    Keep up the fight. You may not feel it at the moment but there is light at the end of the tunnel.

    Lynne

     

  • Hi I'm so sorry to read about your diagnosis and your suffering through all the chemo treatments. I wish you strength to keep on with your therapy so that you can live a long and happy life. Having BC is very unfair and takes a lot out of a person - whatever the type or treatment. Sending you hugs, Xxx Jeanine
  • Hi I'm so sorry to read about your diagnosis and your suffering through all the chemo treatments. I wish you strength to keep on with your therapy so that you can live a long and happy life. Having BC is very unfair and takes a lot out of a person - whatever the type or treatment. Sending you hugs, Xxx Jeanine
  • You certainly have had some fairly awful side effects. Chemo is a marathon and you do get worn down towards the end. I had a mastectomy in May followed by 18 weeks of Chemo (FEC/Docetaxel). I felt that during the last 3 rounds (Docetaxel) I never felt very good except when on the DEX. It was pretty much 9 weeks of feeling various degrees of awful! It is just over 4 weeks since my final dose and we are trying to move house. It is a new house and the builder is kindly letting us begin moving some things slowly while the last few building things are completed. I have also had 8/25 radiotherapy treatments. I have just started being able to do normal activities again and am not falling asleep at 7pm anymore! There is a light at the end of the tunnel and you do recover and start to feel better. Let the oncologist know about your side effects. They should be able to weigh up the benefits compared to the side effects and explain what would be best for you and why. For me Chemo gives me a 20% decreased chance of a recurrence (I had a 40% chance of recurrence without it, too high to risk not doing the chemo!) Your statistics will be different and chemo may not make such a big difference for you. Best of luck with whatever you decide to do. Deanne xx