Hi everyone, I haven't been online for awhile, but felt a need to come back today and see you all!! (In a manner of speaking!). Has anyone experienced similar to what I am currently going through? In March I was diagnosed and had a 5cm tumour removed which was aggressive and grade 3. My surgeon recommended a mastectomy AFTER chemo mainly because I had cancer in 5 of my lymph nodes. I had 6 cycles of chemo, and 2 weeks ago I had a mastectomy. I have remained positive most of the time, grieved the loss of my hair and subsequently my breast with out too much trauma, only to return to the surgeon today to discover that the pathology from the removed breast was not good at all and included another large tumour. The chemo hadn't reduced or got rid of this which makes me wonder what is now growing in the rest of my body! I am starting radiotherapy soon and my multidisciplinary team are meeting this week to decide on the next course of action, probably more drugs and possibly removal of my ovaries as my cancer is oestrogen receptive. (I have already started tamoxofin). I am suddenly very scared and also angry that the mammogram didn't pick up the other tumour. Yes, my breasts are large and dense but in todays world WHY wasn't it detected sooner? I will fight this and I will try to be positive, but I don't know how many more setbacks I can take. Anyone else endured multiple setbacks and how are you doing?

Hi Jenny, I had lots of setbacks last year when I was diagnosed, and it is all very frustrating and scary. Like you, my tumour did not show on a mammogram. In August last year my screening mammo was clear, so after hotflushes from hell, I went on HRT, confident that all was ok. After 3 months I had another mammo just to check an old lump. Mammo was clear again, and ultrasound said lump was glandular, so OK, but wait, there was a little cyst underneath. I could have a biopsy if I wanted, but they weren't very concerned. Biopsy showed 4 mm invasive tumour. A week later I was having a lumpectomy to be followed by radiotherapy. Setback number 2 came when the 4mm tumour was actually found to be 21mm and a grade 3. So, it was back to theatre to have a mastectomy and level 1 axillary clearance and then onto chemo. Next week I'm going in to have a second mastectomy and insertion of tissue expanders. The date was all set, and as a formality before seeing my surgeon I had another mammo and ultrasound. Mammo was clear, but a new lump was found on the ultrasound. I felt like this was history repeating itself, and as it looked suspicious I needed to have a core biopsy. This was a very scary 2 days, only 4 weeks ago. This time I was lucky and no cancer was found, but I'm really pleased to be getting rid of this second boob next week. I do not want any more setbacks. I'm doing really well now, and I hope you too will be doing well. It is such a bugger when the news is always worse than you are expecting. I'm so gladyou have a positive attitude, as I'm sure that helps. I too have tried to be as positive as I can, but sometimes it is just too hard and you need to have a good cry. Please let us know how the meeting goes with yoyr team, and what the next course of treatment will be. We will all be thinking of you wishing you well. Love Chris xxx

Thank you Chris for sharing your story. It is very upsetting when you think you are on one path then a setback occurs, or as I look at it these days, another "bump' in the road! But we just have to get on with it don't we? Good luck with your operation next week, I will keep you updated on my progress xx

Thank you for coming back online. I think of you often and wonder how you are going. That is not the news you would have expected after chemo. From my perspective, I will never have chemo again. You are not the first person to come through chemo and it hasn't worked how it should have. So far so good with me but who knows. My latest scans have been okay. Did you get any chemo after affects? I am like a very old lady morning and night with very stiff joints. My MO swears that it would not be caused by the chemo!!!!!! but the oncology nurses say that it can happen to people quite often. I am so sorry that this has happened to you but I am very proud of your attitude - you keep fighting and whatever decisions that you make will be the right ones. Please keep coming online to let me know how you are progressing. XLeonie

Keep on Fighting | BCNA Online Network

14 Replies

amandal
Member
14 years ago
I finished chemo in May, and now also have a 'grandma perm' at the ripe old age of 34, in fact we recently visited my husband's 95 year old grandmother, and our hairstyles were almost identical- all that was missing was the blue rinse! Rather disheartening when there's nothing you can do about it- although after reading your posts, I may book in a visit to the hairdresser- see if she can work some kind of miracle! Although as one work colleague reminded me (tongue in cheek) I should be grateful I have any hair at all!
Leonie_Moore
Member
14 years ago
Hi Chris,

I had my hair coloured yesterday - couldn't stand the "old girl" look anymore. My hairdresser said mine is about 2cm "long". The girls in the salon were so excited for me and thought the colour was wonderful. I went "hat naked" in public for the first time after I had my colour. It feels good to have the hat off but my head is still a bit cool at times. I am off dragonboating today and I actually wonder how buggered my poor old body will be. Gosh it takes a long time for full recovery. Some say 2 years after chemo and I am starting to think this is the case. I just wish these aches and pains would disperse - even just a little would do. Will be thinking of you on Wednesday so when you are lying on the trolley waiting to go into surgery - feel my presence - I hope I can send you some good vibes and love. XLeonie
hdubs
Member
14 years ago
Hi Chris

I had enough of my old lady perm last weekend and got my hair chemically straightened. Before chemo, I had straight hair with a little wave towards the ends. I feel like this is one step towards getting back to normal.

Helen.
Sockett
Member
14 years ago
Hi Jenny,

I have just been diagnosed with early BC Grade 3, margins clear & luckily no lympth nodes involved. Just am 11 days into my 1st chemo which has me very tired, but am buggered if I can sleep at night. I can see a finish line with 3 more chemos to go, then rads.

So sorry to hear of your setback, and I would like to wish you all the best for you treatments to follow,, & look forward to reading your progress

I have a great family & husband also, don't know what I would do without them.

Take care

Chris N xxxxx
jennywren
Member
14 years ago
Hi there, good to hear from you! I have been very slack not coming online, but I have had family over from UK, still working plus my recent surgery so it has been, to say the least, rather hectic!!!

I haven't had too many after effects from chemo (thank goodness) mainly fatigue, and my eyes aren't as good as they used to be, a little weepy and blurry at times. If i need it again I will go down that path,as right now i am SO scared I think i will try anything!

My hair is coming back very fine and yes...grey, but I guess if I have chemo it will go again! Really doesn't bother me as i like my scarves and wigs and as long as I am alive that is all that matters!

I will keep you posted on how i am going, take care xx
jennywren
Member
14 years ago
Hi there, good to hear from you! I have been very slack not coming online, but I have had family over from UK, still working plus my recent surgery so it has been, to say the least, rather hectic!!!

I haven't had too many after effects from chemo (thank goodness) mainly fatigue, and my eyes aren't as good as they used to be, a little weepy and blurry at times. If i need it again I will go down that path,as right now i am SO scared I think i will try anything!

My hair is coming back very fine and yes...grey, but I guess if I have chemo it will go again! Really doesn't bother me as i like my scarves and wigs and as long as I am alive that is all that matters!

I will keep you posted on how i am going, take care xx
Chris
Member
14 years ago
Hi Leonie, My operation will be at the Sydney Adventist Hospital. My hair is growing, and due to the warmer weather I am going without a wig more and more. My hair is very dark with grey highlights, and is tightly curled, like an old lady perm. I'm very keen to have some colour put in as well, and as my oncologist said he is happy for me to colour my hair, I will be doing this soon after my surgery. I will feel alot better with no grey, but have to work out what to do with these curls. Now, my hair is about 4cm long. Maybe spikes would be a good look. i'll go and borrow my son's hair gel. Love Chris xx
Leonie_Moore
Member
14 years ago
What a bummer this bc is. I wasn't aware that you had to have more surgery. Good luck and best wishes for next Wednesday. Keep me informed of your progress. How is your hair going? I am over wearing hats - now back to sun hats as it is quite hot here. I am getting a colour in my hair this Friday as I am sick of walking like an old lady as well as having old lady's hair colour. What hospital are you having surgery at? Thinking of you. XLeonie
Leonie_Moore
Member
14 years ago
Thank you for coming back online. I think of you often and wonder how you are going. That is not the news you would have expected after chemo. From my perspective, I will never have chemo again. You are not the first person to come through chemo and it hasn't worked how it should have. So far so good with me but who knows. My latest scans have been okay. Did you get any chemo after affects? I am like a very old lady morning and night with very stiff joints. My MO swears that it would not be caused by the chemo!!!!!! but the oncology nurses say that it can happen to people quite often. I am so sorry that this has happened to you but I am very proud of your attitude - you keep fighting and whatever decisions that you make will be the right ones. Please keep coming online to let me know how you are progressing. XLeonie
Leonie_Moore
Member
14 years ago
Thank you for coming back online. I think of you often and wonder how you are going. That is not the news you would have expected after chemo. From my perspective, I will never have chemo again. You are not the first person to come through chemo and it hasn't worked how it should have. So far so good with me but who knows. My latest scans have been okay. Did you get any chemo after affects? I am like a very old lady morning and night with very stiff joints. My MO swears that it would not be caused by the chemo!!!!!! but the oncology nurses say that it can happen to people quite often. I am so sorry that this has happened to you but I am very proud of your attitude - you keep fighting and whatever decisions that you make will be the right ones. Please keep coming online to let me know how you are progressing. XLeonie