I was told the gap between op and starting chemo is to allow the wound to fully heal if it is too soon the wound can break down. I had my first op on 28/6 for mastectomy and lymph node biopsy as they didnt think it was in the lymph nodes, however all 3 came back positive, I then had a lymph node clearance on 3/8 shortly after a CT then first chemo 28/9 as a precation to catch any stray cells so it was a while. My consultant said I will lose hair with chemo, I tried cold cap but my only worry is I only need to be in hosp for treatment for about 1 hour but the cold cap process took nearly 4 and half hours and I'm very concerned about Covid and being in that environment longer than I need to so I have taken the decision not to carry on with the cap. Good luck with your appointment and let me know how you get on. Take care and stay positive you've got this 💪
Im not sure what they’ll give me, my results to make sure the surgeon got clear margins is on Monday. I’ve had 2 Ops now, the original Op was based on Invasive ductal C from the biopsy Of the lymph’s and breast but once they took the tumour it was Lobular so had to go back for margins. I was hoping to get started this month but my hospital are very slow So I was worrying about time scales but noticed between Op and starting chemo you was a good few weeks. Your treatment plan is quite a long process I wasn’t expecting that long but I’ll be just glad to get started. I’ve had a PET/CT scan and was told it was clear so at least I know it’s not spread and found another host! I don’t think I’ll bother with the cold cap with it being winter I’ll be ok with hats, beanie and bandanas etc and a sleep cap. Although the website someone put on here for gym/swim wigs www.headscavesbyciara.co.uk look really good although I do neither gym or swim 😉at the moment, but they’re quite natural looking. Did the BC nurse say you’ll lose your hair with your treatment plan? Good luck with your next chemo and I’ll let you know what my chemo plan is once I get it. Take care and stay safe 💕💕
I hope you are doing well? My chemo is EC 3 cycles in total given every 3 weeks then I switch to Paclitaxel which I will have weekly for 9 weeks then 1 month break then radiotherapy every day for 5 weeks so a way to go yet. I have my second chemo on Monday. What will your chemo be do you know? Are you going with the cold cap?
Ive just read this thread and I also have Lobular and had full axillary and lumpectomy and had to go back as margins not clear. I was 9 lymph’s positive out of clearance of 22. I’ve been told I will need chemo which hopefully will start soon. I’ve read you’ve had your first chemo and hope you’re feeling ok. What chemo plan are you doing, is it 3 weekly? And how many cycles? I know we’re all different but I’m trying to prepare myself. Good luck with your next cycle of chemo hugs 💕x
I am very pleased to say that I am doing well. I read about lobular cancer not responding to chemotherapy and was told this is pre surgery as it does not shrink it. I had my first chemo on 28/9 I was a bit rough first week but I am getting right again now. Maybe you werent offered chemo as it wasn't in many of your nodes?
Can I ask how you are doing? I have only just come across this thread but was also diagnosed with lobular and had a mastectomy and full clearance. I was not given chemo however as lobular cancer does not respond to chemo apparently. I did research this and it is true. I hated being treated in the time of Covid and almost have palpitations when I think back (although that could be the Tamoxifen which is another story). I hope you are well. Sarah
I had total lymph node clearance on 3/8, I am going this afternoon for the results, I am so scared that they will say it has spread, I hope I can find the strength to cope if they do.
Thanks for advice it is much appreciated I will look into those things you suggest. I won't touch wood either but I really do wish you the best
It’s a tough business, balancing mental health with the terrors of cancer-world. If it’s any consolation, I was diagnosed in September 2018 but was so shell-shocked I simply hadn’t the energy to panic. After surgery I got my 4th diagnosis which indicated chemotherapy was a necessity, I made the connection with my phobia (vomiting) and went into meltdown, again too shell-shocked to have a panic attack. Just no energy. My GP helped to some extent but it was the oncologist who resolved the issues, by prescribing something to take before each chemo and upping the anti-emetic measures. Plus support from The Haven. The result is that, over almost two years and a year after treatment sort of finished, I haven’t (touch wood) had a real panic attack.
I think my phobias overrode my fear of cancer, then I was just too numbed and exhausted to care! I never lost sight of the end date and just stumbled on with all the help I could find. Be honest with your oncologist about your depression/worries, your breast care nurse should be a great source of support - and once it’s safe to resume support services, there are Macmillan centres, Maggie’s, Breast Cancer Haven and organisations specific to your hospital maybe. You need to ask though as it’s not an automatic service. Some women want it, some don’t. Some are offering online support - ask your b-c nurse. The usual offer is 6 weeks but they do know their stuff - cancer issues seem unique so I’d say go with the ‘specialists’ rather than the general NHS mental health offer (my husband was really helped by the support he got from a Macmillan volunteer counsellor). There are also alternative therapies like reiki, acupuncture, aromatherapy, massage - just waiting for the pandemic restrictions to be lifted.
PS. Try not to compare yourself to anyone else. Like I said, you’ll find your own way. You are unique 😉 x
Yes im very much a dont tempt fate person so I know what you mean. I cant seem to stay positive for more than a few hours and when I read the stories on here and the strength and positivity people have shown i get very cross with myself for feeling sorry for myself.
I already suffer with depression so I'm really trying hard to find the positives will definitely give you tube a go. Will I be offered counselling at some point during this journey as I think I could use some?
I didnt think of the face time thing, thank you will do that at my next appointment which I am dreading more than the first to be honest, so frightened it will have spread further. Can I ask how big your lump was mine was measured at 4cms on ultrasound but was actually 13cms when removed so that frightened me too, where your nodes clear on clearance? Sorry for all of the questions I'm still reeling from diagnosis and trying to grasp onto some hope
I agree with Jan that you need to find ways that work for you to cope with the effect that a cancer diagnosis has on your physical and mental well-being. It is important to acknowledge that it is quite natural to have some negative thoughts at times, you must not be hard on yourself when this happens. I know that my way of thinking, being two years from end of main treatment, is that when people ask if I am OK I say fingers crossed yes as I don't like to tempt fate. People think this sounds negative but it is what works best for me. Every one is different and you will find what methods suit you. Most importantly be kind to yourself during the coming weeks, months and years. Best wishes. Linda x
I just wanted to suggest you don’t beat yourself up about being positive. Yes, it does help. So do many things that many of us can’t achieve. Just find your own way to navigate all these strange and potentially scary experiences. You’ll get there - in your own way.
Many friends (yes, I was treated in the days when a friend could sit and make jokes to distract you from the reality of what was going on) commented on how positive I was about breast cancer. Actually, I didn’t feel remotely positive - I’d just numbed out because I realised I had to just trust my team and leave it in their hands. I was too worried about my phobia (potentially a huge obstacle to treatment) so breast cancer paled in that shadow! That got me through. If it looked positive, great.
Now is the time to be serious about protecting your mental health, so you’ll have found strategies that help by the time you need them. Seriously practise your yoga, meditation, mindfulness, marathons, whatever helps you. I found Plugging into YouTube videos several times a day really helped me relax (I can recommend Progressive Hypnosis and Michael Sealey - I owe them!). It’s a sound investment in these early days when you may feel powerless. You’re not.
Good luck in navigating some choppy waters.
Also diagnosed during Covid. I agree 100% Hideous getting diagnosis and appointments on your own. Have you thought about using FaceTime so a friend/ partner/ relative is ‘with you’ during your appointments? Or just your phone on speaker? It wasn’t given as an option to me by the GP or anyone in my Br Ca Unit but a medic friend ( who is an Oncologist at a different hospital) says she has always used it to allow relatives and friends to support the patient. So now I have my partner ready and I dial in as I get called in to the appointment. Prop up the phone so he can see the clinician. He takes notes and checks that we have covered any Qus I might have. It’s been a huge help as there is no way I could have retained the information.
I read this thread as also have Lobular Br Ca. 2 surgeries for WLE, starting shortened 5fractions RadioT next week. Almost every step has been delayed and I really empathise with the uncertainty of waiting. Isn’t that the hardest thing? My understanding is that Lobular disease is slow growing so the delays are not significant to the outcome.
Still trying to get my head around it as I think the powerless feeling of this disease isn’t helped by having disease which you can’t self-check?
Would recommend counselling sessions, early days but that is helping me to take one step at a time, feel some sense of control and understand that it is normal to feel changed.
There have been some beautiful rainbows in this storm that is Breast Cancer. So many generous, compassionate strong women sharing and supporting each each other. Thank you & Best wishes,
I am sorry that happened to you, but hearing that has helped me, I got such a shock when they said all 3 lymphnodes were infected as no other test picked it up, that and the size of the lump really frightened me. Hearing what some people have gone through on here has made me shake myself and get my positive head on as I know i will need to be positive
Try not to be too frightened by it all. I was told after my mastectomy and full axillary clearance that 19 of the 21 nodes removed were cancerous. However, a CT scan, a bone scan and two MRIs found no sign that it had spread. Infected lymph nodes mean they’re doing their job. It’s a really frightening time, with an unexpected diagnosis, frightening oncology language, surgery and the prospect of chemotherapy so what you’re experiencing is a normal response BUT it’s all manageable and we each find our own ways through it. You will too.
You’ll find a lot of support here and the nurses are wonderfully supportive. You’ll also have a breast care nurse assigned to you already (?) so no reason to look anything up on Google - it’s the worst thing you can do, believe me. I wish you all the best with whatever your treatment plan is x
Don't blame yourself for trying HRT as it may not have made any difference. I started having periods at ten and had a late menopause. I did not try HRT but still developed breast cancer. Genetics play such a big part in cancer and we cannot do anything about the hand we are dealt. All we can do his to do our best going forward and hope for a bit of luck as well. x
I'm so pleased you are doing well, I'm sorry about the hot flushes. I could kick myself because I went through the menopause and my hot flushes were so bad I decided to try HRT now it turns out my concern fed on estrogen so I feel I enabled it in some way. I have got to go on Anastrozole and a side effect is hot flushes, but as you say if it saves my life, I have learnt a good lesson xx
It must be hard when covid means you can't have another person to listen and take things in. I know that even with my husband being present there were some grey areas. Hopefully you have a breast care nurse who can answer any questions you may have or to go over the information as it is all overwhelming at the start. I am doing well at the moment, fingers crossed. My only problems are minimal at present due to Letrozole. I have intense hot flushes a few times a day, triggered by changes in temperature. I feel unwell briefly beforehand so know what's coming but it is all over very quickly. I am also a bit stiff when I get up but this goes in minutes. If the drug works it is worth these minor inconveniences. I still have days when I dwell on what the future may hold but on the whole I focus on doing things that make me happy. I hope you get good results from your lymph node clearance and your treatment goes well. x
Thank you for replying. Mine is also grade 2 my surgeon never really went into any detail and because of COVID I had to go in on my own and to be honest I didnt hear much after he said the 3 lymph nodes were cancerous, I didnt really know what to ask. He said it is estrogen positive so I will need to be on a tablet he then said it could be 6 months of chemo and then radiotherapy unless it had spread in which case it will change my prognosis and I will need a full body scan. Its just all the waiting and if buts and maybes. I hope you are doing okay?
Really sorry that you are going through a frightening time at the moment. I, like many ladies on this forum, can empathize with your current situation. I myself was treated for a Grade 2 invasive lobular breast cancer in February 2018. After surgery it was 35mm with 18/18 positive lymph nodes after an axillary level three clearance. I had chemo, then re excision to get clear margins. I then had 23 days of radiotherapy and four six monthly bisophonate infusions. I am just coming up to having been taking Letrozole for two years. My surgeon said that lobular is a slow growing but sneaky cancer. Try to stay positive as it is still possible that you will have the surgery and there will be no other infected nodes. Even if they are there is treatment available and no one knows for sure who will be the unlucky ones. I try to exercise andmand a healthy weight as it is my way of feeling I have some control. I know it is easy to say and the unknown is scary but hopefully things will feel better when you have the full picture and treatment plan. In the meantime use this forum to find out about other people's experiences and the comfort of knowing that you were not alone. Best wishes. Linda
Hi, I'm a very scared newbie. I noticed a thickening of right breast was referred to breast unit, I have yearly mammograms because of family history, they redid mamagram that was clear, then had ultrasound which showed lump about 4cms had biopsy. Ultrasound didn't show node invasion, went for MRI that didn't show node invasion. I was booked for a mastectomy and node biopsy as a precaution had that done 23/6. Went back for results 2 weeks later and was told lump wasn't 4cms it was 13cms and all 3 nodes showed cancer, i felt like I had been hit by a truck. I am booked for total lymph node clearance on 3/8 but I Darenth even hope they will be clear because everytime I hope for the best I seem to get smacked in the face. I feel so low and can't stop crying i keep thinking the worst will happen