Yes I agree with Shi, make sure you do your exercises, it is 4 weeks today since my mastectomy and the movement is now improving although I am lucky as in my movement wasn’t that bad even just after operation but definitely improving still. am still sore but I think that takes quite a time to settle down.
Left ❤️ Getting the drain out will make a big difference ❤️ Ensure you do your exercises that you’ve been given, day by day just try and go a little further, I used sticky coloured dots on door so I could see daily how movement range improved maybe that will help as it make you feel like you’ve achieved that little bit extra each day ❤️ Just keep on with them, you will regain movement and think it was about 6 months before it all started really feeling back to how it was before. I had therapeutic mammoplasty though not a mastectomy. ❤️ You are doing great 💪 step by step you are getting there 💪💕💕✨✨Shi xx
I have been following this link, glad you are doing well. I’m 38 just had a mastectomy (1week ago) feeling a bit sore but drained removed yesterday which was great. Still have restricted shoulder movement, I would be interested to hear how your movement is.
I’m waiting to hear the next step chemo/radiotherapy just waiting to get biopsy info back after surgery.
definitely feel the not knowing/waiting is the worst part.
Sounds very similar to me, I am 67, I am having to have hormone suppressants for 5 to 10 years, but need to wait for oncotype tests results first, I am too hoping I dont need to have chemo or radiotherapy as not in lymph nodes and clear margins…, I am not liking this wait. I am the same, not so sore when turning over in bed but is sore and have a tight feeling that side with like you the fluid under arm and toward the back…. Mine isn’t going down either, wish it would. Keep in touch let me know when you get results
sorry - they did say I would need immunosuppresants for ten years if I dont have chemo and also a tablet for bone density - phapha something - cant remember what it was called.
Hi Jaynie - i had my mastectomy on 28 Oct. I am still quite sore with fluid on my side and round to my back and swelling doesnt seem to be going down. Doesnt hurt quite as much when I turn over in bed. Waiting for result of the Oncotest to see if I need chemo - cancer wasnt in the lymph nodes so hoping I dont. My cancer was 40mm and found at my routine mammogram - I am 74.
I am in Surrey. I don’t know much about the oncotype test. I am only going by what my consultant told me. Perhaps each consultant has different ideas. I hope your wife’s treatment is going well
I’m curious about oncotype testing? They don’t test for less than 3cm? Where are you located? My wife is less then a cm and they made her take the test.
Sounds very similar to me, are you having to have hormone suppressant tablets at the end of treatment? I am also hoping I dont have to have chemo/radiotherapy. Do you have any puffiness under your arm? I have a bit which feels like there is fluid there and uncomfortable and does not appear to be reducing either
I am also waiting for the Oncotest to determine if I need chemo - hopefully will know in next couple of weeks. My tumour was 40mm and not in lymph nodes so I’m hopeful. Had mastectomy and still sore four weeks on.
I am doing okay but still very sore. Yes is good news about my lymph nodes being clear and there was a clear margin but because the tumour was bigger than 3 cm (was just over 4 cm) they have to do a test on it called Oncotype DX and am still waiting for results. Will be seeing an Oncologist for that in severally weeks time. It is to find out if I need chemo/radiotherapy (I hope not). I am glad your tumour/lymph nodes are shrinking but sorry you are having to go through all the chemo, am not surprised you are feeling anxious about the next lot of chemo. I would imagine the chemo is hard going. I am going out and about a bit now hope you are managing to as well which I expect depends on how you are feeling after your chemo sessions. Keep in touch
Sorry for not replying sooner. I've been wondering how your operation went but for some reason, I didn't get a notification of your last reply and only found it by checking back. It's so good to hear that your lymph nodes are clear, that must be an enormous relief for you and I guess by now you'll know whats what with the pathology report?
It's no wonder you're feeling sore, but it sounds like you're on the road to recovery which is good. I really hope the pain has subsided and that you're managing to get out a little.
I'm half way through chemo now and had a couple of scans which showed that my tumour and lymph nodes are shrinking...YEY! They also identified a second lesion which is pre-cancerous, so when it comes to my lumpectomy in Feb/March that area will be removed too.
I really can't wait for my chemo to end as it's been pretty hard going. My next cycle starts on 06 December and will be a new regime of Docetaxel combined with Phesgo injections which target the HER2 receptor. I'm feeling really anxious about the side effects of Docetaxel because its very toxic and I have no idea how I'll respond. Phesgo also takes its toll on the heart, but I'm having another ECG on Monday to check my old ticker is up to it.
Anyhoo, do let me know how you're getting on and enjoy the weekend when it comes.
how are you? I have had my mastectomy last Wednesday which as far as I know went well. They tested 3 lymph nodes which were negative so no further nodes were removed thankfully. I am now home and recovering. I have my follow up with the consultant on Friday the 19th November when I will get results of what was removed and find out what is next. Am feeling very sore and have had an upset tummy but apart from that am okay. Let me know how your treatment is going?
I hope everything goes well with your operation today and that you get well soon.
I can only imagine how anxious you're feeling about your mastectomy. The waiting and build-up must be intolerable but hopefully, you can begin to heal and move forward soon. Thank you for calling me brave, but I think you're the brave one. As soon as you feel up to it, let me know how everything goes and I'll be routing for you.
Christmas is just around the corner and by then you'll have the op behind you and a fresh new year in front. It sounds very positive that you might not need chemo but even if you do, it's manageable and will mop up any rogue cells.
Well, it's a beautiful day here in Scotland and I hope the sun is shining where you are too. I'm going to go our for a walk later and enjoy the air.
Stay strong lovely, you've absolutely got this 💪
sorry to hear that. I don’t know either whether I will be having chemo after just been told that I will have to take hormone suppressants for 5 to 10 years after op
i hsve also just been diagnosed with the same type of breast cancer as you and been told I need a mastectomy. I’m having surgery in a few weeks- I’m a bit confused about if I will need chemo after.
it’s a crazy time but you are not alone. X
Sorry to hear about the results of your MRI scan I will keep everything crossed that it is not malignant and nothing to worry about. Am glad your chemo is going okay. I don’t know if I will need chemo yet. My mastectomy is next Wednesday (4th) and am getting very nervous. I must admit the wait has been awful, the time has really dragged. You are very brave in shaving your head that is the problem with chemo isn’t it losing your hair am not looking forward to that bit if I have to have chemo after. Keep strong and keep in touch
Hi Jaynie, sorry for not replying sooner.
I tend to be more up-to-date with threads on the October chemo forum these days so I'm really glad I caught your message.
How are things with you and have you started treatment yet? I remember you sounded a bit anxious about things last time we spoke.
I had my second round of chemo last Monday, but seem to be doing okay. Felt a bit sicker and more fatigued than last time but that was partly because I'd forgotten to take yesterday's steroids 🙄
I also had some unexpected news last week following the long awaited results of my MRI scan. Turns out, I have a second lesion in a different quadrant of my breast which may or may not be malignant. My oncologist said its probably nothing to worry about but as a precaution, I'm booked in for an ultrasound this Friday and depending on what the radiologist finds, he/she might take a biopsy and insert a clip.
On the plus side, its not raining today and I plan to go out for a walk later. I find walking clears my head and helps me put things into perspective. I also plan to try out one of my new turbans as I had my head shaved last week and it's getting a bit chilly out there.
My first round of chemo went better than expected and was relatively pain free. I have thin veins in my hands and arms so it took a couple of attempts to insert the cannula, but when that was done everything moved into action.
First of all, I was flushed through with a saline solution to help the chemo drugs circulate. These were administered slowly by hand in case of an allergic reaction, but all was good.
I was sent home with an armful of anti-sickness tablets which have so far done the trick and three days of steroids. I also have to self inject a growth factor for bone marrow which I’m not looking forward to - first injection today. On the whole, I feel okay but fatigued and sometimes forget words during conversations, but I’m going for a walk later to get my circulation moving.
Hope you’re feeling okay. Any more news on your operation or treatment?
lovely to hear from you. I am glad you both enjoyed your birthday celebrations! I am pleased that my HER2 results are negative but was a bit disappointed that the operation isn’t this month but can’t do anything about it really. I am sorry to hear yours has grown but hopefully the chemo will shrink it. To be honest I am not sure mine isn’t a bit bigger. In the letter I had from consultant (one they send to gp) she stated that the whole mass took up half of my breast! 😱 which is scary! Good luck with starting it today I can understand that it is scary and I dont know as yet if I will be having chemo after operation. I am finding that the time is going very slowly I expect that is because I want to get this out of me the same as you do as well. Let me know how your chemo goes later
keep in touch
Hi Jaynie, how are you and how are you feeling about your HER2 result?
I’m okay, but can’t sleep (waiting up for my daughter to come home from the dancing).
No MRI result yet. To be honest I forgot to ask when to expect the result, but have my first chemo session on Monday (tomorrow…yikes) and will ask then. I think my tumour has grown though as I now feel it circling the top part of my nipple/areola area. Apologies for being so descriptive, but I originally felt it at the side.
So, you’re having your operation next month. I guess it’s good to know you’ll have that out of the way soon and can begin to recuperate. Do you have any other treatments lined up? Such a scary time, but I’m rooting for you.
RE: birthdays. We really enjoyed the theatre and had several meals out. I figured we won’t be doing that in the months ahead, so why not live a little now. We went to see a new production by the Scottish Ballet which was based on Gene Kelley’s Show Time. It was really good and I’m so glad we went.
I’ve joined the October chemo forum on here which is a great support. I’m really not looking forward to starting, but know I have no choice and need to get on with things.
I’ll let you know how I get on, but please keep in touch to let me know how you are.
how are you doing and have you had the results from your MRI yet?
My HER2 test came back negative and have an operation date for the 3rd November. Hope you both enjoyed your birthdays
Enjoy the Theatre and meal tomorrow and I wish you both happy birthdays! Yes is a difficult time and fingers crossed we both get through this. I will keep everything crossed for a good result for your MRI scan. I will of course let you know how I get on and please let me know about yourself too
Just a quick line to say thank you so much for your kind words and I understand how worried you feel. If it’s any consolation, I was diagnosed nearly 4 weeks ago and my HER2+ status means that my cancer is pretty aggressive. After the MRI today I’m extremely anxious about the results, especially as it’s already in my lymph nodes. But for now, there’s really nothing I can do about it but wait until I get the results. In the meantime, hubby and I are off to the theatre tomorrow and having a meal (with wine) to celebrate our birthdays 😊
To help me stay positive, I try to remember what my grandmother once told me which was something along the lines of “try not to worry about something until you know you have something to worry about”. Easier said than done I know, particularly in our situation but it helps me manage the difficult days.
It would be lovely to keep in touch, so please stay strong and let me know how get on.
good luck with MRI scan. Mine is oestrogen and progesterone positive. I hope my results don’t take 3 weeks as worried about cancer spreading as I think I have had it a while. Keep in touch
Hi Jaynie, lovely to hear from you 🙂.
I have an MRI later today and will have a marker inserted into my tumour. Then next week, its a PCR test, ECG, bloods, and a cancer chat with my specialist nurse covering all aspects of my chemo. The infusions start 11 October, my 50th birthday. Not the celebration I had originally planned, but it's the first step to surviving and getting rid of this thing.
I'm sorry to hear you wont be able to celebrate your husband's first year of retirement in quite the way you had hoped to. My husband and I had also planned to celebrate our 50th birthdays (his is on the 1st October) by having a special holiday. Of course, that's on hold now but we are planning some exciting adventures for next year.
I do hope you receive your HER2 result soon as I know waiting for it can be very stressful. For me it was three weeks and because my biopsy results were oestrogen and progesterone negative, I had convinced myself of a triple negative result. My only advice (if you haven't done so) is to seek info from trusted sites such as Macmillan and Cancer UK, then write a list of questions for your oncologist. That way you can take some control and prepare for the next step.
Well, I better get ready for my appointment. But do let me know how you get on and if you ever feel like a chat just drop me a line.
Keep your pecker up,
Thank you for all your advice and I really hope you are getting through all your treatment okay
i am sorry to hear you are going through the same thing as me. I am 67 and my husband has just retired so was looking forward to our first year with him being at home! I was not offered a lumpectomy, was told it will be a mastectomy. I am still waiting to get results for HER2 test. When are you starting chemo and infusions?
sending virtual hugs to you too
I’m new here also and was recently diagnosed with invasive ductal cancer grade 2, HER2 positive. The cancer has spread into my lymph nodes, so I’ll be having 6 rounds of chemo and 18 Herceptin infusions followed by a lumpectomy and radiotherapy. My lump is 22mm and like you, I feel terrified by the possible side effects related to my specific treatment and long term prognosis.
I guess it’s the fear of the unknown and having to face my mortality at a time when I still feel fit and young that’s most scary. I’m 49 (so not that young) but have a 20 year-old daughter who I intend to stick around for. We’re very close and the thought of not being there for her as she moves through life sickens me more than this bloody cancer.
So, I’ve decided to buckle up tight for the rollercoaster ahead and take comfort from the many insightful words on here because we’re not alone 😊.
Sending positive vibes and virtual hugs,
I’m sorry to see you here but you’ve found the right place. I had two tumours (one of each) and most of my lymph nodes under my arm were infected. I’ve suffered from severe anxiety most of my life and , like you, I was terrified, beyond terrified. I told them about my fears and the team bent over backwards to accommodate me, showing me round the chemo suite in the evening so I could talk to staff and see patients chatting, eating NHS sandwiches with a cuppa, just getting on with it. It was an eye-opener. The oncologist also prescribed a sedative to take before each session if my anxiety felt unmanageable. I only took them the first few times.
The chemo sessions were fine. There was nothing to fear there. The side effects a few days later weren’t pleasant but the pharmacy sent us home with goody bags, including meds to stop nausea, laxatives and, of course, my next two sedatives! I was never sick and rarely nauseous. My main problem was fatigue, which takes on a whole new meaning. But other women sail through so don’t assume you’ll get every side effect. It was all manageable and I got through it and came out the other side, straight into radiotherapy which I personally found very easy. As for hair loss… it may not happen. If it does, it’s only hair and it grows again very quickly. It was a very interesting experience, particularly losing nasal hair, which I’d never thought about before!
It’s important to talk about your fears to your breast care nurse or oncologist. It’s also important to decide how much information you really need. I decided to trust the team and got by on the minimum of information- I didn’t want to be scaring myself when I was already terrified. Just because you don’t fully understand the technicalities doesn’t mean you have to, if you don’t want to. The outcome will be the same.
It’s essential that you don’t Google. We all say that on here. Google is unreliable and we don’t have the expertise to work out what’s relevant to our unique diagnosis. Google also doesn’t care about how we will feel about what we read. It’s fools’ territory while under treatment. Ask the experts at the hospital. Ring the nurses here - they are wonderful. Ask in the forums here (but remember we’re all different and you’ll get different experiences in the replies)
The other important thing is to find ways to reduce and manage what is a perfectly natural response to this diagnosis. Yoga, running, baking, whatever you enjoy. Do it and enjoy it. There are loads of resources online, apps you can download like Calm and Headspace, which the NHS recommend. I used the Progressive Hypnosis videos on YouTube. Still do.
Yes there will be side effects when you’re on whatever hormone therapy they prescribe. That doesn’t mean they are unmanageable. Sometimes just a change of brand sorts things out - it did for me. The fact is, all these treatments are there to heal you in the long run. Yes, it’s not nice but yes, it’s worth it if you leave the hospital one day floating on air because you’ve been told you are NED (no evidence of disease).
Sorry for the ramble but I so wish I’d found this site a lot earlier. It helps to know you aren’t alone. I wish you all the best and hope your treatment is kind to you.
Jaynie - welcome to the forum . The first few weeks after diagnosis are so so tough - you get the information in stages so you don’t really know what you are dealing with until you have all the pieces of the jigsaw .Best advice is just try not to think too far ahead or it is too overwhelming - just take one step at a time . Get information about and get prepared for your op then move on to the next stage .
If you do need chemo there will be lots of support and advice here for you from people who understand and people around at all hours of the day and night to talk .x
I have just been diagnosed with Invasive Ductal Cancer Grade 3 and have been told I will need a Mastectomy not a lumpectomy. It is hormone receptive positive so will need to have a hormone suppressant drug after mastectomy. I am waiting for HER2 test to come back which I have been told will be next week and if it is positive will need chemo before the operation. I am absolutely terrified and so scared of the side effects that I could have from chemo and hormone suppression drugs. There are 2 lumps one is 11 mm and the others 21 mm.