I am 42 years old and have been diagnosed with IDC Grade 3, 4 nodes involved ( ER 100%, her -ve). Had a mastectomy 3 weeks ago and start chemo on May 9th. . I am very frightened generally and about chemo (6 x tax).
I met oncologist this week who was very negative and told me too much unneccessary info (a lung nodule seen on CT but which radiology report states to have no convincing evidence it is metastatic) and extracapsular invasion (surgeon stated no implication as took fat pad around) and added a dramatic pause or too which resulted in a complete meltdown. I was made to feel like a dead woman walking and spent 2 days feeling proceeding was not worth it as I have had it.
Saw surgeon later this week and she was much more positive with me. She was not worried re CT as “everyone has them” (dr google confirms half population) and always just the same…have to re scan in 3 months. I had been told pre surgery that this same scan was clear so never expected to hear any different.
I don’t want to go through chemo and lose hair to find out next scan confirms the worst.
I feel like I am in a living nightmare I cannot get out of.
Anyone want to buddy me or offer any words of wisdom? Sorry to be so negative
Thank you x
Hello there, i am so sorry you are facing all this, i am from April 2014 thread, i wanted to wish you all the best for your treatment and sadly there will be many other ladies starting chemo in May who will join you and you will find this forum an excellent support, if not already why dont you give the helpline a ring for a chat, they may explain better the medical report and be able to reassure you, i know it feels so frightening and daunting at the moment- just face each treatment a step at a time, chemo is doable and side effects can be well controlled and mostly you can have a “normal” life, i carried on working as much as i could through mine, it made me feel more able to cope. Also you can try the Cold cap, it works for many ladies.
The April and February threads will be useful too as they are just ahead of you.
You will cope and you will get through it, i know it doesnt feel that way now- but YOU WILL !!??
Take care and keep posting!
I am sorry to hear you are going through this anxious time but it is good to see you are already getting support from our users.
As Lovewine has said if you would like to chat through some of the questions you have you can always call our helpline at 0808 800 6000. They will be able to offer a friendly ear. The opening times are below.
Late opening Monday and Wednesday 5pm-7pm,
Thanks for replies. My mistake…it is 6 x TAC. Will my hair definately go? When will eyebrows and eyelashes go. It is very confronting. They were negative re cold cap as well as everyting else re theoretical scalp mets. Was desperate to try but now feel I will not as need to feel happy I have done all I can to prevent any return. Xx
Hi Flower That sounds a really horrible experience, you poor thing. I’m sure we would all feel pretty upset to hear that. Good to hear some of the doctors were not too concerned & you should take heart from that. I was told FEC-T & TAC are hard on the hair & loss of hair is almost inevitable, but decided to give it a go anyway. I took some painkillers an hour before & the cap didn’t bother me that much to be honest. I did lose quite a lot, but it was mainly thinning all over. I personally preferred to see myself in the mirror having a really bad hair day, rather than being bald. We’re all different & most of the ladies who didn’t cold cap said it was upsetting when it went, but they got used to it pretty quickly. Worth a try perhaps? I know it’s so hard for you, but once you get going you will feel a bit stronger. Take care of yourself & sorry to hear of your diagnosis. xx
I’d like to be your chemo buddy please,
Yes please! Are you starting then too?
Hi Flower I started chemo Wednesday so just got in April starters . I did cold cap and I got through it for me it was more like pressure on and around my head rather than a feeling of cold. I am having FEC T x6 round 2 for me 18th May. I was sick when I got home and felt tired and headachy. I woke up yesterday feeling normal took my daughter to school and worked from home. I took a holiday today as hubby off getting sorted for a football tournament for our son. He is our middle child. So I thought won’t get any work done when he is pottering and have had a lazy day. I have been more tired today. But so far all manageable. My cancer was IDC grade 3 . I had lumpectomy and SNB didn’t get clear margins so then had skin saving mastectomy with immediate implant. Really pleased with my surgery results just need the other side marching up. You will get through this and find amazing support on her. Lou x
I am normally a confident person but this has really knocked the stuffing out of me. I am anxious now most of the time. I have recovered well from mastectomy and start chemo earlier (4 weeks) due to this. I did not get offered immediate reconstruction but am ok with it currently cosmetically. It is the thought of rogue cells which I cannot bear. The oncology appointment was so negative that I dread going again. I am aware this is a serious situation and terrfying me was of no benefit. My surgeon said oncologists tend to be jaded and negative due to the fact they tend to generally see people not doing well, and not all the women out enjoying life again. I prefer her more optimistic approach. X
Mind over matter positive thoughts and you will overcome this illness! I am from April 14 also and had chemo then mastectomy followed by radiotherapy and her herceptin! Most unpleasant at the time but now 2 years on and still alive! Good luck and use this forum for support - we have all been on the journey or are en route! Live for each day!?
We can stick with this one maybe. I have random crying episodes re this and the whole damn lot. I am so into healthy eating and living that to fill my body with this goes against everything…however not stupid enough not to do it and rely on a few berries and some flaxseed! We will get there together literally…i will get hair cut this coming week and looking at wigs on tuesday but just not sure about it x
Do you mind saying any more re your diagnosis and chemo regime planned? Ok if not…I was very scared re the surgery too but in reality it was ok really and I have bounced back really well. Never had so much as an grumbling appendix or anything pre this so starting pretty major. X
Hi Flower and other May starters,
Just dropping in from Marcch 2016 starters to wish you all well.
My circumstances slightley different to yours - HER2 positive, stage I/II grade 3 so have had lumpectomy, 8 out of 12 cycles weekly taxol and have cold capped, hair a bit thinner & finer but still there. Another month of chemo to go. Herceptin injections are every 3 weeks, and I have radiotherapy “with boost” to come after the chemo. Hospital where I have the chemo has excellent Macmillan Centre which offers counselling, aromatherapy, relaxation, make up etc. The counselling has helped me come to terms with fact I have been off work since Jan 4th (day before dianosis) and will likly be off until Jan 2017. I am a teacher in a special school but feel totally disconnected to it as my life now is weekly blood tests & chemo; next it will be daily radiotherapy,
Sorry to hear you have negative oncologist, use the forum to get questions you can ask as well as all the support you need.
Take care of yourselves,
Thank you Mary. I am preparing in little ways…got ginger cordial and ginger tea and ginger biccies!, prunes, thermometer, notebook for symptoms and temperatures, trying on scarfs to practise for around the house, booked wig appointment just to have a look…
I was a bit angry inside when I asked onc what I could do to try and get best future outcome for me…apparently there was nothing. I asked re vit D but not interested even though had level checked at GP in preparation. I already know re the brisk walks for 30 mins and have been doing but not even mentioned. Surely they should give you some things to feel you are helping and working to get best outcome together. X
I’d love to be a chemo buddy as I also start on the 9th May.
The closer it gets, the more anxious I’m feeling. I’m usually a really strong person and most of the time I can put on my positive hat but this whole diagnosis has floored me.
I’m 51 and was diagnosed with triple negative in Feb. Had a WLE in March where they removed a 30mm tumour and 26 nodes, 5 of which were affected. Margins were clear.
It’s all been a rollercoaster of emotions as cancer does not run in my family. I had a CT scan last week and booked for a bone scan next. My oncologist has also suggested tested me for the BRCA-1 gene and if positive putting me forward to take part in a clinical trial. My head is all over the place waiting for results and trying to accept my current situation at the same time.
Would love some support and help support others along the way.
Hey Geraldine, you are in! What regime are you on? It really is a pile of s##t isn’t it…we will support each other through xx
That’s great … I’m so grateful for this site and having the opportunity meet other ladies experiencing the same feelings.
I’m on FEC-T x 6 followed by 15 rads.
Hi Geraldine, Great to meet you! But I so wish the circumstances were different … I think we’re all feeling similar, but will be good to have the support of each other, so that’s three of us starting the 9th … xxxx
Hi can i join your group please i also start on may 9th tracy xxx