I have waited almost a month to see a consultant today, after being diagnosed with 2 IDC in my left breast, grade 2 and grade 3 on 15 Jan.
I was initially told I would need a mastectomy but today was advised chemo
Was needed first because I am triple positive with big tumours of 26
And 14mm
The consultant is waiting for recommendations from a panel meeting this coming Friday. Meeting with him on Tuesday next week. For now he recommends 6 months of chemo before a mastectomy.
I am concerned I have not had a CT scan or a MRI, and that I have to wait again to know what the next step is. It is quite stressful. I was getting ready for surgery mentally but not chemo.
Anyone else has had a similar situation? I am really scared of chemo, pain etc and I have a big needle phobia which does not help.
Thank you!
So sorry to read your post, however, we Have all been there and now were here for you not all with the same diagnosis. Everybody seems to have a different story. Mine is very different to yours but I want you to know that I’m thinking of you and wishing you well for an excellent outcome.
I feel sure that one of the other ladies will pick up with a very similar diagnosis as you and will come back to you. Unfortunately we all seem to have this waiting around before we move on, which really doesn’t help at all. I think after the meeting you will have a plan which will make you feel a lot better when you know which way you’re going you probably would then be offered scans etc.
I would suggest you have a notepad to scribble down a few notes before going back to see your consultant, as there is so much to take in that way you can look back and see what has been said.
Wishing you health and happiness going forward please keep posting and let us know how you’re getting on.
I know that this sounds Im glad you are being offered Chemo first. When I had my primary diagnosis I took part in the NeoTango clinical trial. There were 2 types of chemo available and mastecomy. Some had what was standard then, operation then chemo. Some had one type some the other and some both. Others had one or other of the chemos then operation. I was in the group that had both chemos followed by mastecomy. My tumour was large 7.5 cm (75 mm) and it shrank to half the size before the operation. That was in 2006.
Chemo could never be described as pleasant but preparation is key. Cold capping can help with hair loss but if you have long hair have it cut shorter first. You will get tired and it will gradually become more noticable so dont push yourself. You will probably feel sick but dont accept the first anti sickness you are given. I was extremely tired after my first round and worried how I’d cope with 3 children 13 9 and 5. One day I forgot my anti sickness and woke up feeling great and didn’t take them again. Ive had different one since some have worked some havent. If you have questions ask even if youve asked before. Make sure they know how you feel about things and what you know.
But the most important thing is not to worry and be positive. I set myself little goals and treats to work towards and got to my 10 all clear.
Talk to people and be honest. If you feel crap tell them as when you loss your hair people obviously see and know you have Cancer but once it starts coming back they think youre better. I found that was when I felt worse and most tired but the offers of help dried up.
Its a topic people are uncomfortable about so we need to talk about it as much as we can to educate others.
Bit of a ramble but I hope it helps. Good luck with everything.
Thank you for your lovely message. I have not slept at all and although I am patient I really can’t wait to start treatment. I have scribbled quite a few questions for Tuesday.
I am really impressed to see how strong all of us are on the forum.
Thank you so much for your message and all the details. I feel a bit reassured. It feels so surreal and scary.
I have very long hair and one of my goals for 2024 was to cut it short and send it to the little princess charity. They make wigs for children with cancer. Hopefully they will be able to make one or two.
Work is going to be a tough one. I have a very challenging job and no company sick pay so that is one more worry.
I am drafting questions for Tuesday and will take it from there.
Knowing your BC managed to shrink with chemo is really positive.
I will post again next week with an update. For now I am keeping an eye on threads and trying to stay strong. Such a caring community!
Speak with a Macmillan representative for advise about work, benefits ans Grants. Its very important to have the time to rest and concentrate on yourself.
I was put in touch with Macmillans at the CAB. I got a grant to help with out of pocket expenses and help with applying for PIP and a Blue Badge.
Hi Marion
So sorry that you have found yourself here. A lot of good advice already given. Just wanted to say that I was really scared about starting chemo but it hasn’t been as bad as I feared. I have 2-3 days of feeling very tired after and I take all the medication I can (anti sickness and anti diarrhea) but then I pick up again quite quickly and I’m still running 5km and walking a lot. It depends I think if you are on a 3 weekly cycle as if you are then it gives you a bit of recovery time in-between. Don’t know what to suggest for the needle phobia but I had a PICC line put in which i much prefer to having a cannula put in or having blood taken as they take blood through it and administer the chemo through the PICC line, all painless. I definitely found the waiting before starting treatment an incredibly stressful time - so just try to be as kind to yourself as possible.
Not a good surprise for you, chemo is not fun but doable and the side effects were temporary for me. During the summer 2022 I had 8 weeks sick leave for the mastectomy followed by a second op for the lymph nodes clearance. For the 6 cycles of chemotherapy that followed, my oncologist encouraged me to go back to work. I was able to do this because am working from home, and was lucky enough that my colleagues and line manager were understanding about me signing off early on days when I was feeling under par. The first week of each cycle was the hardest. After my first cycle I was fitted with a PICC line so, although it takes maintenance, you don’t have to deal with needles as often. The first 3 cycles were Epirubicin & Cyclophosphamide together with powerful anti sickness tablets, but I still experienced mild nausea in the week after the infusion. I was also prescribed steroids until day 3 after the infusion which gave me lots of energy for the weekend, so day 4 (Monday) was the worst. For the last 3 cycles I had Docetaxel which caused me no nausea but a lot of other unpleasant thankfully short lived niggles (mouth sores, bad taste, achy muscles, rashes, fluid in the legs). The low energy week was a day or two longer during the final two cycles. I was not offered the cold cap but with no regrets because I’m far too much of a fidget toy extend the duration of the infusion in the attempt of limiting hair loss. Hair fell out on day 18 of the first cycle, and my husband helped shave what was left. I had a nice collection of head cover and had told my colleagues about my diagnosis so did not opt for a wig. I also lost my eyebrows and eyelashes, which caused my eyes to water when outdoors. On the plus side, there is no need to shave our legs or bikini line anymore. My big toe nails fell out and other nails became discoloured. Regrowth is slow. My toenails are nearly back one year after the final.cycle, and my hair is about 7 cm long now. It’s grown back curly and grey so I use a bright red washout die on it! Chemo is not easy but it’s doable. With the level of care in my area, I did not feel alone and felt generally safe. Keeping active when I could helped me but so did jigsaw puzzles and TV series to keep me distracted. I even learned a lot by trying to continue my classical vocal study and practice through the different levels of energy, a big lesson in being very gentle with myself! I hope this helps! Best of luck with your upcoming treatments.
Hi Jenny,
Thank you and my apologies for the late reply, I hope everything is going well.
I feel a bit better about the PICC line and I think I will go for it. Still waiting for a start date. I had a MRI yesterday, and was told I needed to do a PET scan, see a cardiologist and do some blood tests. So further wait for me and the wait is dreadful.
Take care
Marion
Thank you for sharing your experience and my apologies for the late reply. I hope everything is going well for you.
Your experience is very helpful and makes me feel a bit less worried.
I saw my consultant again on Tuesday, a bit of a waste of time as I only spent 15 minutes to be told the same thing as last week. I had a MRI yesterday and saw anoter consultant, now been told to do a PET scan which is delaying the start of my chemo. I am now waiting for a PET scan date. Things seem to go very slowly in London unless I am very unlucky.
Thank you. My consultant was supposed to call me on Friday with the MRI results but did not. Still waiting for a PET scan date.
I was told it would not affect the chemo plans, which are EC x 4 every other week and then weekly TTT for 12 weeks. Compared to others it seems much stronger and more frequent. I am 50 so it may explain a tougher regime who knows. Saying that I am working, I am self employed and also employed to make ends meet. No company sick pay so I am now worried about my mortgage and paying for the rent of my small business.
Feeling really down this weekend. The 3 hour return trip for each appointment does not help. I hope things will move a bit quicker in the next coming days but it’s already been 8 weeks since my initial BC diagnostic.
Sorry for the rant. Hope you are having a relaxing weekend.
No need to apologise, you have a lot on your plate -not surprised you were feeling down.
Hope things have moved on in a positive direction now?? Sounds so frustrating, and awful that you have money worries on top of everything else have you checked with Macmillan to see if you are eligible for any financial support?
A 3 hour trip is a lot too!
Sorry for very delayed reply, I have been feeling fatigued after my last chemo!
Sorry to hear about your fatigue. I hope you can relax and will feel better over the weekend.
I was planning to post more on the forum but its’ been total silence from my oncologist and she’s been sitting on mt MRI reults for weeks. Had a very cold hearted call on Thursday where she told me that I had 4 tumours not 2 and would start chemo on Monday! 9cm of tumours! My breasts are dense so they all tumours were not visible at mammogram and ultrasound stages.
It was a bit of a shock, no information given, just a ;I am sending you consent forms you will get some details later’. Very short notice for me and also for my employer. I don’t even have a PICC line fitted so will have to do with canulas as there is apparently a waiting list! My veins are difficult to find and I have a massive needle phobia so I am quite anxious. I don’t even know what to prepare for Monday, and no idea if I will be able to work on Tuesday.
I will join the March chemo trail and post something with lots of questions.
Oh gosh, that all sounds so stressful! And to start chemo at such short notice is very stressful. Can you ask your GP for any medication to help with the needle phobia? Sure you’ve probably thought of that already.
On the plus side at least the chemo will start knocking the tumours on the head.
I hope you will be underway with your chemo by now. I just wanted to share my positive story that you might find encouraging.
6 years ago i was diagnosed with a 2.5cm herceptin+ ductal tumour. I was shocked, just like you, when I was told I would need chemo before having my mastectomy. After my third of six rounds of chemo I had an accident and broke my humerus, meaning they couldn’t give me any more chemo. I had surgery 3 weeks later and was overjoyed when the histology revealed a complete resolution of the whole tumour.
So whatever you might be experiencing with the chemotherapy, just keep in mind the powerful effects it is having against the tumour. There is life at the end of the ‘treatment tunnel’.
Hi @Eily
Thank you so much for sharing your story!
Had my first EC on 11 March and next one on Monday.
2 more tumours were found at my PET scan so I have a massive 9cm of tumours. Chemo will shrink them but I will still need a mastectomy according to all doctors I have met.
I hope you are doing ok
Take care
Marion
have you checked with Macmillan to see if you are eligible for any financial support?