hi all
spoke to surgeon yesterday.he says i had 2 tumors …one 5cm and one 2.2 cm.removed with mascectomy.i have 15/18 positive nodes.i am er/pr neg but don’t know her2 status yet.he says i have both IDC and ILC and will be having chemo and rads starting 2nd week of jan.i have appt. with onc on 3rd jan.
was wondering if anyone had similar who would share there experiences.
merry xmas to all
karen
Hi Karen
I am not quite in the same position as you, but treatment regime sounds very similar. I was diagnosed 1 Nov with 3 cm lump, and probable spread to nodes. Had a right mastectomy on 13th november and full node clearance. Results following that showed Grade 3 invasive ductal carcinoma with 5/11 nodes affected. I am also her2+.
I have to have chemo, followed by rads, then more chemo, followed by a year of herceptin.
My chemo started on 28 November (4 x fec) -have just had the second dose last wednesday. I know I have seen you on other threads here so you will probably have heard people say how ‘do-able’ it is - well it is. There are times it isn’t nice - the sickness & tiredness can get you down - but it is certainy do-able. You just have to listen to your body and not try and do too much. The hair loss, if that is to be a side effect, is also manageable - a little cold at this time of year - but manageable never the less lol
everyone reacts differently to the chemo - do you know yet which you are having?
Once my 4 cycles of fec are over, I have a break for 16 lots of rads, then return for 4 cycles of taxotere, prior to the herceptin. Although my onc has given me my ‘long term’ plan I find it best to deal with it a stage at a time. Breaking it down into manageable chunks makes it seems a lot more approachable.
I also find that I have to talk about it - I tried the old putting on a brave face for everyone, but to be honest you can only do that for so long. Take all and every offer of help, even it it just be picking up a bit of shopping for you etc - it gives you less to do and helps friends and rellies know that they are doing something to help.
All the very best for your treatment - I hope you have a lovely xmas first
take care and keep us posted
Margaret x
Hi Babybellebooboo
Just wanted to say I had ILC with 15 out of 18 postives lymph nodes. I had full axillary clearance. That was February 2005 and to date, I’m doing very well. I had two types of chemo Epi (abbreviated) and CMF. Thereafter, about 26 doses of radiotherapy. The Epi came first - it was pretty horrible but then so was my mind. The CMF was much easier on me. Perhaps by that time I was beginning to see a little light at the end of what I thought was a very long tunnel. The radiotherapy was a doddle. I am ER+, PR+ and HER-. I’m on tamoxifen and suffer from hot flushes, vaginal dryness and the horrible weight gain. I suffer the hot flushes in silence because they come and they go and I’m not really sure what to take for them. As for the vaginal dryness, I use SYLK which I like and have been using for a long time now. As for the weight gain, I am trying very hard to make myself fitter. I love my yoga (for all sorts of reasons) and would thoroughly recommend it to anyone with BC. I have recently joined a gym which I’m finding a little bit boring but am very happy with the swimming element. I also think it helps my right arm.
I live in a very rural community and did not take any support at first. Being misdiagnosed by four years added to my problems and I suffered from depression. I don’t think I left my house for anything other than my treatment for about a year. Once this lifted, or the pills kicked in, I reached out for all sorts of support. I don’t think there is much out there that I haven’t tried. For me, and I accept that everyone is different, the support has been invaluable and I really don’t know how I would have been able to keep the balance without it. Apart from the benefits of having other therapies I have met loads of interesting and helpful people. My acupuncturist was a more worthy councillor than my councillor. She also taught me about visualisation which I have found very helpful.
I’m not posting much these days as I have other pressures - still fighting my medical negligence case. I’m in the silent period of my fight but the battle is certainly not over.
I wish you well. We are all here for one and other and you will get lots of help from this Board.
Quote for today:
Friends are like angels who lift us to our feet, when our wings have trouble remembering how to fly.
Enjoy Christmas.
Love
Jeannie
Hi Karen,
Welcome (in the best possible way)!
I had four small tumours, ILC, 14 of 23 nodes positive, triple neg.
Have had my mastectomy and am currently undergoing chemo.
Good luck with your onc meeting and let us know your treatment plan.
Lots of love, A xxx
Hi Karen,
Hope you’re doing ok. I had 20/23 nodes positive for cancer, 2.2cm idc and 9.6cm dcis; alot for a 34AA.
Just wondering what age group you are in as I think from reading this that the younger women that seem to have more nodes involved. I was 27yrs old at dx but was misdiagnosed a year earlier.
I’m finished chemo in sept and rads mid-november and feeling great. Hope you get the HER2 results soon and please stay in touch. Everyone is very helpful here.
Best wishes and Merry Christmas to you,
Teacup xx
many thanks for your replies.
hi magz
i don’t know my treatment plan yet…i see the onc. on the 3rd jan for that though the BCN says 8 chemos every 3 weeks.don’t know if she is just guessing or knows for sure.i too want to chat about the BC whenever anyone wants to listen. i really find it helps me and my closest friends and family don’t have to tiptoe round the subject.i am managing to keep a brave face and stay positive and have only broken down twice.i must have found an under lying strength coz i don’t normally consider myself a strong person.
hi jeannie
nice “quote of the day”.i’m glad things seem to be getting better for you…depression is an awful thing to deal with at the best of times.i won’t be taking hormone therapies due to er/pr - and from what you have been through i’m glad (or am i being nieve).don’t know about the ins and outs of hormone therapy and how much good it does.
hi andrea and teacup
many thanks for your support.i am 43 so don’t class myself as a young woman(if only ) lol.its intersting what you say about node involvement.i will have to read more about that
a very merry xmas to you all and good luck with treatments
regards karen
Hi Karen
My story is wle and snb in august - 30 mm idc removed but with some dcis and snb positive - went back for aux clearance and mastectomy with ld recon - found another area of idc 1.5mm in size but not detected on scans and dcis gone but quite large. 12 out of 28 lymph nodes affected. Both bone and ct scan negative.
Currently had 3 fec and 1 tax - only 2 more tax left then 6 weeks of rads and then at least 5 years of tamoxifen.
I am just 40 with a 3 and 5 year old - so intend beating this.
Chemo is do-able and I have had many more good days than bad.
Happy Christmas
Take care, love
Anne x
Hi Karen
I was diagnosed Dec 05 age 37, results 8cm tumour and 15/20 nodes positive. Having high node involvment is a very frightening path result and I too came onto this site to try and find others in same scenario.
It had taken 2 months to get diagnosed by BC and thats how my lump grew so big so immediate emergency mastectomy with FNC, followed by 4 FEC then straight into 18 Herceptin with 4 Taxotere, 25 rads and tamoxifen (I am + on everything).
8 chemos are tiring, but its do-able and if you are Her2+++ and start herceptin along side taxotere then you dont get a break from the chemo suite for nearly a year and a half. so it is a long old drag but from what I have read a better plan.
I recently had loads of scans prior to my reconstruction 15 days ago and all were no evidence, I have also read on here that higher node involvment is more common on younger woman as we tend to be higher graded, we dont always show up on mammograms so longer to diagnose + we are not in any programmes getting checked on a regular basis.
Good luck with the chemo.
Debbie x
Hi Debsy
Good to hear that your scans prior to reconstruction were good news. You are so correct in what you say about high node involvement being a very frightening path. I also had 15 nodes with cancer. However, I was also four years misdiagnosed, being told I had nothing to worry about on three occasions. My GP also refused me a mammogram saying I was not eligible as I was under 50.
I hadn’t realised that high node involvement is more common in younger women. This concerns me greatly - are younger women are not getting the care they deserve? All the younger women I know have Grade 3 cancers which is considered aggressive. And, like you say, there are no programmes in place to get regular checks. I hope Breast Cancer Care are taking a note of what we are saying here. I personally think many younger women are getting a raw deal. Whilst 80% of breast cancer affects the over 50s, what happens to the remainder 20% who are under 50? Do many of them struggle to get their voice listened to? I know I did.
Wishing you a very happy and healthy 2008.
Love
Jeannie