DCIS - to be or not??

Oh funny, leprosy was the thing I thought of too. Losing toe nails wasn't so bad really. It was worse when they were threatening to fall off because they kept catching on things and I'd have to put bandaids on them when they did fall off. If I was carefuI, it was more uncomfortable than painful. Shoes were a bit of a problem but I wasn't working so I made sure the shoes I wore were soft and very roomy in the toe area if I had to go out. At home I lived in slippers or just socks. My neuropathy is dissipating so it looks like I will make a full recovery which is good news. My fingers still feel quite weird but I can do a lot more with them thank goodness. Don't beat yourself up about being spooked or scared about your diagnosing. I went up and down emotionally like a yo yo and still am. One minute I am feeling pretty good about the future and the next I'm worrying if I'll get this again. I think that's a naturally part of this whole process. My hairs is not that long yet, a couple of centimetres but thickening up. It's funny as there are a couple of hairs on top of my head that are about 3 cms and they stick straight up. My husband said they were my Mohawk look LOL. So glad you and your daughter are hugging. Love Janey xxx

Hi I'm so sorry you've had a diagnosis that scares you but I am happy that its finally the correct one! I'm also happy that you've communicated with your doctor and that he's taken you off the chemo - it's empowering for us when we feel doctors are listening and we aren't just little mice running on a wheel because someone told us that's what we must do... In regard to your surgery, if you're not having immediate reconstruction with expanders then I don't believe it's too painful. I had bilateral mastectomies with immediate expander implants and that was very painful but I have spoken to others who didn't and they have practically sailed through their surgery. Either way, having a good pain-management plan in place is important as you don't need to suffer and there are good drugs to control pain and discomfort. Also, don't do too much post-surgery and rest a lot. This helps your recovery so much. I'm hoping to hear that your unwanted chemo side-effects have gone very soon, and that you're feeling better and more like yourself. Keep strong - we are all wishing you good health! Xxx Jeanine

Hi Deanne,

thank you for the kind words and also your experience with surgery. I have a friend who's had a double mastectomy this year and she's recovered well too but her experiece before was so different no side effects at all!!

I will definitely try to concentrate on having "it" gone - it has to be the main thing doesn't it? 

thanks again

Ranveig

Janey,

thanks for your response - after reading about your hand/foot I feel like I exaggerated - a lot - I reckon your hand/foot was worse than mine, it's kinda weird seeing your hands peeling though isn't it? looks like i have some terrible contagious disease - leprosy springs to mind!!!. the peeling skin got worse today. hope i don't lose the toe nails - that sounds awful - how did you bear it? it was bad enough shuffling about with the blisters but with no toe nails I'd really be stuck, no one else to drive and how can you wear shoes then?  I am hoping the numbness in my fingers goes away,  i was so relieved to not have to have more chemo - lord knows what my extremities would look like after  another 2 goes!! I couldn't hold a pen for a few days and as you said, tying shoelaces etc has presented  a challenge. has the neuropathy gone away? - I hope it's not permanent, it would be awful. I have to say that I am now totally spooked about the diagnosis, scared I am really, I don't think it actually sank in till yesterday (three months after initial diagnosis of inflammatory BC) nothing slow about me!! i will be glad to get my hair back i have to admit, I feel cold all the time on my neck and head. I have to agree with you, the time has just whizzed by since July. my daughter and I have been giving each other quite a few hugs these last few days - i think more for me than her sometimes!!  I am nervous about surgery though and some days i find it difficult to be positive and being home all the time and not being able to do stuff was really getting me down at least now i can finish unpacking my belongings from our recent house move!!

I wish you the best in your treatment too.

Ranveig

I've been following your posts and I am so pleased for you that the question of why you had to have chemo is now resolved and that it wasn't given for no good reason. But I am so sorry to hear that you have now been diagnosed with IDC, and after being messed around with diagnosis in the first place. That must have been so frustrating. Although not as bad as yours, I had that horrible hand/foot syndrome too (so I can totalling sympathise with you) with the skin on my hands and feet peeling like bad sunburn and I lost nearly all my toenails. I also had peripheral neuropathy (nerve damage) in my fingers which made handling hot and cold things really difficult and manipulating small objects like pens, cutlery, buttons and shoelaces etc. a major challenge. I was scheduled to have eight rounds of chemo but my last one was cancelled too and I was just so relieved. It's amazing how quickly this year has gone for me after thinking that this whole horrible nightmare was stretching on into the distance and I couldn't see the end. I'm sure it won't be long before you will be at the other end of this tunnel too. I admire your positive attitude and courage. I hope your daughter is coming to turns with all this and you both can hold each other close and keep smiling. Laughter is a great tonic. Good luck with the next part of your journey. Sending you hugs Janey xxx

Glad to hear that you were not having Chemo for no reason! Although sad that it is invasive cancer. You certainly must have had a severe reaction to the chemo for your doctor to call a halt to it. Having had a mastectomy, chemo and radiotherapy myself i can assure you that the worst is over. Surgery and radio are much easier than chemo.

Try not to worry too much about the mastectomy. It quite surprised me how easy the recovery was from my mastectomy back in May. I had a few tears before hand too. What worried me was the thought of the wound and how yucky it might be. But it turned out to be very neat and hardly any pain at all. Only needed medication for a day or so. I healed surprisingly quickly and was ready for Chemo after 2 weeks! I concentrated on the fact that the surgery was removing the cancer and I really, really wanted that gone! That helped me to get through it all. Hope you are feeling better soon and that your hands make a quick recovery. All the best for your surgery. Take it really easy so you are in the best position for surgery soon. Deanne xxx