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

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14 Replies

jennywren
Member
14 years ago
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
Chris
Member
14 years ago
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
Chris
Member
14 years ago
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

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