Hi All I’m from the Sept 20 group also following Lisaloo and Wolvesgirl as they are both TNBC like I am. And I find it awesome that you keep updates on here❤️Lisa, how comes you need to have extra chemo?
I did put a reply on here the other day but it doesn’t seem to have posted!
it’s lovely to hear how everyone is getting on and that everyone is managing through these very strange times.
Im nearly finished cycle 4 of my extra chemo and it’s been decided that I’m having 6 so I’m getting there. Apart from feeling very tired Iv been ok so far 🤞🏽 Iv been going to my doctors for my bloods taken and having telephone appointments for my checkups between cycles, then I go every three weeks to pick up my tablets, the chemo ward has been moved from Darlington memorial hospital, my main hospital to bishop Auckland hospital which is a much smaller and a no a and e hospital, I feel safe going to pick my tablets up there and to be honest it’s a little ride out as it’s about 30 mins away.
I’ve been going out for walks most days, just making sure I keep my distance from people and I’m now able to meet up with someone for a socially distanced walk which is nice. I’m currently furloughed and unable to go back to work anyway with me being in the at risk group.
I have struggled some days with trying to remain positive, which is unlike me, I think it’s a mixture of having to have more chemo along with everything else that’s going on at the minute, more time to sit about thinking!
After a conversation with my BCN she said I’d have an appointment with my oncologist in sept and I’d be due a mammogram on my remaining breast in sept too. My appointment with the plastic surgeon for my reconstruction has been cancelled which I’m ok about as I’d rather wait until all is a bit more stable with the world.
take care ladies and big hugs to all.
Hello all - glad to read your updates, and that we all seem to be doing OK...
I love 'scanxiety' and am definitely going to use that! I believe my health district don't do a follow-up mammogram until a year after treatment has finished (I'm taking that to be the radiotherapy, rather than my continuing 3-weekly Heceptin which doesn't finish until the end of August). I'm pleased with that, because my dodgy boob is still quite painful sometimes - when squeezed - and I really wouldn't fancy having it squashed in the mammogram machine at the moment. In fact, I decided I would ask for it to be delayed if they did ask me to go in for one soon.
I had an phone update with the oncology consultant about a month ago, and she decided to keep me on the Herceptin for the full 18 cycles. Apparently there has been a trial where you stop after 9 cycles and there's no difference in the outcome, but the onco and I decided together to keep on with the full 18 to be on the safe side, and I've only got 4 more to go now. She said that due to my age (60!) I was at low risk of complications if I was to catch COVID-19, even though the Herceptin has meant I'm on the 12-week shielding list as it definitely lowers immunity. Just thought I'd mention that, in case it makes anyone feel happier about going out (it certainly did for me). She also said it was the Letrozole (hormone therapy) that was making my legs/hips ache and that it should settle down after the first 3 months (I've been taking it for just over 2 months now). Fingers crossed, as I'm to be on it for "at least 5 years".
I'll also be sent for a bone scan when hospitals start getting through the backlog (I haven't had one of those yet, despite being on Herceptin and Zoledronic Acid). So I agree, Wolvesgirl, the differences in our treatments / checks have been huge!
It will be a year since I was diagnosed soon. When I feel a little down at times now (probably brought on by the lockdown) I only have to remind myself of what's been accomplished over the last year to stop me feeling sorry for myself now.
Best wishes everyone, keep on keeping on!
Love Julie xx
I am constantly amazed by the difference in the way units work - some seem to have quite close follow ups, others just the annual mammo, but the latter does seem to be a standard - I am sure its in some NICE guidance or other so I am sure they will do yours. The appointment might just be the BCN checking in with you. Apparently the anxiety caused by an impending mammogram is called Scanxiety! Its certainly a good descriptor. xx
im pretty much the same as you with my aches and pains, pretty much all my joints hurt but I’ve been doing a workout every week day during lockdown while the kids do their lessons.
When I was referred from the breast unit to oncology Last year, I received an appointment to go back in July this year...I presumed this would be for my yearly mammogram.
I have just received a letter to say this appointment will now be done Over the phone!! I’ve rang the consultants secretary to query this and I’m waiting for a call back as we speak. I really hope that they haven’t decided not to do the mammograms so was pleased to see your post, fingers crossed that this was just a check in of some sort 🤷♀️
Hope everyone else is ok, fingers crossed for you Wolvesgirl, the anxiety is immense is it!!
Let us know how you get on please xxx
Hope you are all well and continuing to recover from the onslaught our bodies have taken over the last year or so. Blackcat - you must be nearly finished your Herceptin treatment now? I hope everyone has avoided the dreaded covid so far? I am really well, pretty much recovered from the pneumonia and up to three Zoom Zumba sessions a week plus lots of walking and gardening when the weather allows. I have a few aches and pains still from the radiotherapy but believe that can be long term so ignore them really.
I have just had a call from the hospital to arrange an appointment for my first mammogram - they had spaces next week so I am going on Wednesday. Has anyone else had theirs yet? I must admit to feeling a bit anxious now and wondered if that was just me? I really don't know how I would cope if something else shows up - it was such a shock last time - I skipped into my mammo appointment without a care in the world and within a week it had all come crashing down. I think thats the problem - there was no lump or other symptoms then.
Anyway, just thought I would touch base. Much love xxx
Great to hear how you are all doing - I can’t believe it’s over nine months since we started out together on the chemo journey last August!
Spottycotty - I’m so glad to hear that you got checked out and that everything is OK. I haven’t much news to report, other than that I’m still going for the three-weekly Herceptin/Perjeta infusions (cycle 10 of 18 is next week), which our hospital has moved to the Nuffield hospital nearby to keep oncology patients away from COVID-19. I’m also on bisphosphonate tablets and Adcal. My radiotherapy finished on the day lockdown started, so seven weeks ago now, and I haven’t had any side effects but am still using the R2 waterjel cream which was prescribed by my GP and seems to be excellent for protecting the skin. My hair is growing thickly and is about four inches long now, so could really do with a cut as it is getting to have a bit of a wild lockdown look! I’ve been back at work full-time for almost three months now, although working from home as the Herceptin/Perjeta treatment has put me on the 12-week shielding list because it can affect the immune system.
Much love to everyone on the thread!
My appologies for gate crashing your thread yet again. So nice to hear how you are all getting on and its really does help to know that there is light at the end of this tunnel and for the advice that all so kindly share.
Just wondered if any one had experienced a tightness in throat. I have spoken to oncologist and he has discussed also with his team and cant find a reason for this. My throat isnt sore but just feels like im bring strangled and feels so tight. I can swallow ok and in fact appears easier when eating. Ive tried anti histamine / paracetamol / throat spray . Just making me feel so low as its so uncomfortable.
Love to you all and thank you for reading .
Love Daisy xxxx
Spottycotty I am really glad to hear you are all clear. I am sure after treatment moving on must be difficult for everyone and we must treat the lumps and worries seriously at the same time as getting on with our lives. It will take time. I start radiotherapy next Thursday and have been told to cover up the area and no sunshine, which is a shame - plus I think no sunshine for a year? I got myself a large brimmed hat and will dig out the sun lotion too. Any other tips that you have?
Stay safe and enjoy the sunshine,
Thanks Wolvesgirl 🥂
Seems to be common doesn’t it, hope it doesn’t make us complacent though!
Actually, now you mention it, I have been skipping in the garden during lockdown so it’s probably that that has aggravated it !!
my last rads was 21st Feb, so 11 weeks.
my bad boob feels fuller, has some pain and feels a bit lumpy, the lump that worried me, I feel easier when I’ve got body lotion on the area, I marked it with a pen before I went as I can’t always feel it....
I have a friend who finished her rads last October and hers has started to hurt too.
It appears to be common but it’s worth a ring just to put your mind at rest if you’re worrying.
Spottycotty what a relief.... I laughed about the comments - I am definitely not skinny but my boobs are not that big either and the affected one does feel more dense now than it did. I think as we do more as we are recovering impacts on it feels - I am doing more exercise and lots of gardening so I think that has probably caused some aches and pains. Also I don’t tend to wear a bra in winter months but now I am back in t shirts I am and I think that has made a difference too. The nurse said yesterday that as my CT scan that I had when I was in hospital with pneumonia was clear they wouldn’t rush to do another one for this.
Julie my aches started 2 months after radiotherapy finished but I also had pneumonia (or did I - am wondering now whether it was COVID) so I was pretty achy after that too so the two got a bit muddled!
Spottycotty I will have a spritzer for you tonight! xxx
Brilliant news Spottycotty! Congratulations, and I think you were SO right to have it checked out. Really pleased they could reassure you.
You certainly deserved that beer (and a few more 😏)
Could you remind me how long it's been since your radiotherapy ended please? My dodgy boob seems to be changing regularly, and I haven't seen anyone since the start of radiotherapy (only telephone calls to consultants etc) and I'm not sure what I should expect. I'm still having 3-weekly Herceptin (plus pills) but the chemo nurses don't examine me. The boob does ache quite a bit, although not all the time.
Thanks, and well done again!
I was so scared!
So much worse than the first time round!!
He said this is the time things change after radiotherapy, sent me for an ultrasound and she said my boobs are really dense and I’m skinny (she meant small boobs haha!) so I will feel every lump and bump.
They didn’t make me feel as though I’d wasted their time though and said to keep coming back if I was worried...got home and had a beer and a wine! Feel like I’ve been given a 2nd chance, I thought if its back already then I’ve had it!
Really glad I went though, got home and had a beer!!
I am so sorry - I absolutely identify with the worry you must be feeling but hopefully the ultrasound will have put your mind at rest. I have been worried sick too. Please let us know how you are. Much love xxx
Wolvesgirl... I’ve just smiled at your post, I am currently sitting in the breast care clinic waiting for an ultrasound.
My bad boob Has been Hurting, feels fuller and I have felt a new gristly bit so rang on Monday and here I am.. **bleep**ting myself to say the least! Much worse the second tome round I can tell you, ignorance is bliss the first time I think!!
Anyway, hopefully it’s nothing sinister 🥺😩😬
hope everyone is getting on ok...
Hi Daisy, Wolvesgirl and all other ladies.
hope everyone is staying safe and well.
Daisy it does sound like your treatment is similar to mine and I understand your frustration at more chemo after surgery! It’s definitely not what you want to hear. Iv been told I won’t need radiotherapy.. maybe it’s to do with my lymph nodes coming back negative and the fact I had a full mastectomy 🤷🏽♀️ Did they say what type of chemo? I’m on the tablets and half way through my second lot already. I had more side affects with the EC than the pax but everyone’s different so it’s hard to say.
wolves girl I’m glad your starting to feel more yourself and I know what you mean about being on hyper alert! Every niggle freaks me out then when I speak to someone about it it seems to go away!
Hope everyone is enjoying this nice weather as much as you can ☀️
Love to all
I don't come on the forum so much now - part of my moving on strategy - but as a fellow nurse and midlander I think of you and your journey. I am so sorry that you had news that you may need further chemo - I can absolutely understand that is not what you wanted to hear but fingers crossed it won't be needed.
How have you got on with the EC? I had more side effects with FEC than with Docetaxel but we are all different so hopefully you will be better with the next cycles.
I am on a thing now called Supported Self Care which is basically not being called back for appointments unless you have raised an issue. I quite like it - and yesterday I tried out the system as I wondered when I might have my first mammogram as it was due late May/June but obviously things will be different for a while. Apparently they are looking to start again 18 May and will have about a 6 week backlog. I also asked about some discomfort I have developed in my breast - you can imagine what I was thinking! Apparently post treatment discomfort can develop at any time (mine was 2 months post radiotherapy) and as long as there are no lumps or other specific signs it is not too much of a concern. It certainly does not require any analgesia but it frightened me a bit. I think I am just a bit hyper alert at the moment. Since I had the conversation with the nurse yesterday it seems loads better so there is some psychological element to it as well I think. Apart from that I am getting my life back as far as lockdown allows and feel better than I have done for months.
Love to you Daisy and all on the thread as always, xxx
How are you feeling now following surgery ?
Reading through your post it seems like i may be on a similarly path as you but a few months behind.
Im starting the EC treatment tomorrow for 3 cycles then due another ultra sound scan before meeting with surgeon to see what surgery i will need ( tnbc grade 3 2 lymph node and a necrotic node in breast tissue ) . I went to see oncologist yesterday and he had said i will need radiotherapy and ??? More chemo depending on histology results . I didnt realise that i may need more treatment and feel really low as i thought in my head that this nightmare would soon be over and i could get back to some normality. I just cant seem to think of anything else . My daughter is due to go to university and i wanted to be well.
I have experienced many side effects with the paclitaxel and carboplatin and hoping that the EC treatment isnt as harsh.
Sending you lots of love
Isn't it lovely that we have been on and updated how we are doing? I know that as we move along this road that our use of the forum will reduce but it is nice to dip in and out every now and then as I have really come to care for you all - our merry little band!
Hollyleaf - yes you can drive during radiotherapy - I drove myself every day to the appointments and never had a problem at all, it was actually nice to be independent after being driven to and from chemo. In fact, although I know that times are different at the moment but by 14th May it might have been lifted at least a little and I used to combine other things like the gym or shopping with my radiotherapy appointment as you would do normally.
Creams for radiotherapy - I used Aveeno which met with approval from the radiographers- during the course you will be seen by a specialist radiographer at least once, who will talk about your skin condition - it will be seen every day of course and they will monitor it and put interventions in if required. I put the cream on twice a day after showering whilst I was having treatment and for a couple of weeks after and had absolutely no problems as Julie said. If I had an early appointment (the earliest was 0800) I didn't put it on - they said to do it afterwards. I am still moisturising but with a nicer cream now as its a good thing to do generally and to be honest you would be hard pressed to see a difference between my breasts in terms of the skin or anything else for that matter. I can't even see the scar any more and the one for the SNB is very pale now.
I do understand about still having the surgery to come but I am sure you have taken reassurance from the second opinion agreeing with the first. It is such a long road but the end is in sight and you will be able to get on with your life! A rest after the radiotherapy will be nice, especially over the summer.
Anyway, take care all, much love xx
I am also loving reading how everyone is getting on. My hair is coming back nicely and I even go out occasionally without anything on my head - I do look like a woman soldier 😊 but it doesn’t bother me too much.
In terms of next steps, I have my CT scan next week and starting radiotherapy on 14th May so I hope to have all finished by mid June. The surgeon says he then will get back to me 3 or 4 months down the line, to consider a mastectomy, which seems very likely to me. My breasts are too small to take any more tissue out. It really bothers me that I won’t be ‘finished’ for a while yet - although after radiotherapy things will settle for a good few months. I asked for a second opinion (from Sheffield which have a specialist cancer centre) and they agreed with my surgeon, which is certainly reassuring.
Julie, thank you so much for the links, I will have a good read. You all are always so kind and your collective knowledge so helpful. This thread has been a real mood booster to me - incidentally, I have started yoga on an app and absolutely love it.
I wanted to ask - can you drive while doing radiotherapy? Of course none else except me will be allowed in the hospital now, and I am planning on buying disposable gloves and masks to be safer. Going every day scares me but has to be done.
Meanwhile I will also start daily letrozole and weekly tablets of zoledronic acid plus 3-monthly injections. Spottycotty how did the bone scan work? I have chosen to defer mine until later. And finally, I remember you mentioning creams for the radiotherapy?
Thank you so much for replying, you always make me feel like I am receiving a big hug!
Sorry to hear your surgeon didn't get the required margins, Hollyleaf. I had to have a second operation as they'd only got 0.7mm clearance from the first (lumpectomy) op, so the second op was just to remove the remaining 0.3mm and was successful. In the early stages I thought I was going to have to have a mastectomy and I found one of the Macmillan books really helpful in deciding whether to go for reconstruction. I've looked on their site for the booklet, but can't find it - although all the information appears to be here: https://www.macmillan.org.uk/cancer-information-and-support/breast-cancer/should-i-have-breast-recon...
I also found this very helpful, as there's so much information to remember! https://your.macmillan.org.uk/dfsmedia/1a6f23537f7f4519bb0cf14c45b2a629/975-source?_ga=2.32300151.83...
Since my op, I've had 3 weeks of (daily) radiotherapy and, as Wolvesgirl said, it was really easy and I hardly had any side effects... just some dry skin, which has almost gone now. I finished radiotherapy on the Friday before the virus lockdown started on the following Monday, so didn't really manage to get out and about at all! In the final week of radiotherapy the hospital experience was very different (taking temperatures before you even entered the building, distancing etc etc) but it felt very safe as they are aware we're vulnerable and go to extreme lengths to make contact as little as possible. I'm now on Letrozole (daily tablet for a "minimum of 5 years") and haven't experienced much in the way of side effects - just the odd hot flush, which is a relief. I'm also having 3-weekly Herceptin until the end of August and 6-monthly Zoledronic Acid. But it is starting to feel that hospital visits are occasional, rather than it becoming the whole focus of my life.
Good to read everyone else's updates as well. My very best wishes for your recovery. Strange times we all live in, but we'll cope... just like we have over the last year or so.
Lisalou - so pleased you don't have to lose your hair again after all you have been through! Hopefully on the 29th you can clear up the detail re how many cycles. I do hope that you continue to be trouble free through it all.
Spottycotty - how is your hair? Didnt you have the integration system? Have you got rid of that now? My hair is still curly but growing well and getting back to its thick and coarse self. I do hope you get your MRI and it can put your mind at rest. I agree, if they are not too concerned I think that is a good sign but you need to know for sure. Have you still got the pain you had during radiotherapy?
Funnily enough I had a letter today from the breast clinic telling me that I am now on "supported self guided care". It appears that I won't get called for any appointments apart from the annual mammo and the 6 monthly Zometa unless I call them with any concerns (or the mammo shows something). Must admit I quite like that process. I am due a mammo in May/June time which will be a cause of some anxiety I am sure.
Anyway, off outside for some activity - take care all. xxx
I’m unsure of the cycles I’m having tbh as when I spoke to my oncologist over the phone I’m sure she said 6 months! 😳 but speaking to my BCN yesterday she said it’s not usually that long and she couldn’t see anything on my notes. Iv a telephone appointment on the 29th so I’m going to clear that up then. No hair loss with this type of chemo which I was over the moon about as just having got a full covering which has thickened up loads to, I wasn’t happy about the thought of loosing it all again!
Spottycotty hope everything’s ok with your scan it’s good that there being thorough and listening to your concerns.
I feel like I haven’t been on here for ages!
Lisaloo, I’m triple negative too but I am the same as Wolvesgirl and had surgery/lumpectomy first, I’m very interested to hear you’re having more chemo, I really hope it’s not too intrusive for you though, sounds like you are being well looked after..
Hollyleaf, sorry you have to have more surgery but better to be on the safe side I suppose, my pathology report says my margins were less than a mm which horrified me but they haven’t offered more surgery, I’d take what they offer!!
Updaye from me, I went for a bone scan and they identified a hot spot in my elbow, went for an X-ray and they think it’s a fibrous displaysia (🤷♀️) they say they are pretty sure it’s benign but I need an MRI to be sure, I should’ve gone for this Good Friday but they cancelled it until things are back to normal as they said I’m safer at home!!
Im hoping the fact they aren’t too worried is good news!?!
Anyway, take care everyone, love reading how everyone is doing xxx
So glad you are doing well following your op before all this started. I was interested to read about the oral chemo - it makes sense to do that to absolutely make sure everything has been chucked at this thing! I am triple negative too but had the lump out before the chemo and radiotherapy so did things the other way round to you. It is a worry about recurrence but hopefully this will make sure you don't need to worry and you have the benefit of not needing radiotherapy! Bonus. How many cycles will you need to have? Do you lose your hair etc again? I do hope not! Keep well and let us know how it goes. Much love
So Sorry Iv not been one for a while, all my notifications have been going into my spam for some reason!
I hope everyone’s safe and well.
Just a bit of an update on me, can’t remember where I was up to but I had my op (mastectomy) on the 4th March just before covid really kicked in thankfully! I would say I’v got full movement back, still some little twinges now and again but apart from that all good. Results from surgery where it had shrank the tumours one from 22mm to 15mm and the other from 8mm to 4mm the lymph nodes that were taken out were negative for any cancer...but because it hadn’t got rid of the tumours completely there was a higher risk of it coming back with me being triple negative therefore they wanted me to have some more chemo! 😫😫 Capecitabine which is in tablet form, I take 4 on a morning and 4 on an evening for 2 weeks then have a week off then start the cycle again. I’m nearly finished my first cycle and fingers crossed Iv had no major side effects. They said with this form of chemo it’s usually gastric side effects. It’s a very new trial that’s been done for triple negative that shows that having this extra chemo significantly reduces the risk of it coming back again. My oncologists words were your only young and were going for cure, so that’s why they want to throw this at it too. They’ve said because I had full mastectomy and negative results from lymph nodes that there’s no need for radiotherapy. Think that’s where I’m at so far. I obviously had a bit of a melt down at the thought of more chemo and that it hadn’t fully got rid of the tumours like I thought but my BCN said that sometimes it can not shrink it at all so the fact that mine has responded is still good. It doesn’t actually feel like I’m having chemo as I’m just taking tablets if that makes sense. I’m going to my own doctors to have my bloods taken then just have to pick my tablets up from the chemo ward, which has been moved out of my main hospital to a smaller one near by which is a “clean” hospital (no A AND E Dept and no one with suspected covid)
Holly I’m so sorry your surgeon didn’t get the clear margines they wanted to get, I would say to you that the mastectomy op and recovery is really not as bad as I thought. Reconstruction wise mines obv been delayed now but I’m hopefully going for them using the fat from my stomach. If I was having both done then I would of probably of gone for the implants so they both looked the same. Although implants will need more surgery further down the line as they would anyone getting them. It’s such a hard decision to have to make though so go through it all with your BCN and tell her all your worries.
if you want to know anything else please just ask me. I’ll make sure I check my spam! 😆
Big hugs to all
Good to hear that so far we are avoiding the dreaded Covid - I am so sad that I have not been able to take up the offer of reregistering and going back to work but having been advised against it because of my recent pneumonia (I wonder if that was actually Covid anyway as I had some of the symptoms) I have been social distancing and regaining my health. I feel loads better - still a tiny bit achy around the shoulders if I do a lot but I can breath deeply with no pain now and have been playing scales on my flute to improve my chest capacity. I am doing Zumba via Zoom and walking a few miles a couple of times a week so slowly getting there.
Hollyleaf, I can't add anything to what Blackcat told you as I have not had to consider mastectomy and all the options that go with it, but as she says, the BCN will be able to take you through them. Re radiotherapy - I know they are still doing it here and people say that the social distancing in the department is working well. The actual radiotherapy is not difficult - just a bit tedious for 20 days but so important for you of course and will be another treatment to tick off. I am now 2 months since my last one, still getting twinges, I believe that is to be expected but I am worried all the time about recurrence. I don't know how I get past this - maybe once the first mammo is done and is hopefully clear. Its unexpected to be honest, but it did occur to me that it could be associated with the fact that this journey started this time last year - the weather was lovely, just like it is now so maybe thats the reason, its just bringing it back. Anyway, I just have to get on with it!
Stay very safe everyone and Hollyleaf do let us know how it all goes and much love to everyone xx
Thank you so much for the reply. It’s so good to know you feel happy with your choice. You are so brave, I don’t think I could cope being flat sided, even though I have tiny breasts. I am pretty sure I would not want implants or prosthetic aids. I am unsure however they could offer me some other reconstruction but I have not explored the options with my surgeon. For now I will only have radiotherapy, at least one more stage out of the way. The oncologist also wants me to start hormone therapy straight away. It feels quite daunting but I already have menopausal symptoms so, hopefully, it won’t be too different.
Much love to you all,
I’m sorry to hear that your surgeon didn’t get as full a clearance as hoped for, and that you may now have to have a mastectomy. I had a mastectomy and axillary node clearance at the start of January, with one night in hospital and a drain for four days. After three weeks I was feeling pretty much back to normal and had almost full movement in my arm. I went back to work full-time six weeks after the surgery, and two weeks later had three weeks of radiotherapy (which I went to after work, and had no side effects). The recovery from the op was quite quick and straightforward, and I think that it had been the same for others on the forum too. I chose not to have a reconstruction, so I’m afraid I can’t help with any information about implants. I have found that it doesn’t bother me at all being flat on one side, and that I don’t even notice now that I am wearing a prosthesis. Your BCN should be able to give you more information about the different types of implants available, and whether or not you would need further operations. My BCN spend a hour with me going through all the options and showing me photos of various outcomes, and I considered all of them (including recovery times and whether I would need further surgery later). I am glad that I had all the information and time to choose my preferred option, and I am happy with my choice not to have reconstruction.
I hope that you are able to get hold of all the information you need, and that all goes well with your radiotherapy (and surgery in due course). I finished my radiotherapy on the day the lockdown started and was also getting a bit worried about going for treatment, but the hospital had lots of social distancing and infection control measures in place, and so it felt quite safe. I’m sure that your hospital staff will look after you well.
Take care, and let us know how it goes. Love to all on the thread.
I hope you are all coping and managing to stay safe. I need once again to ask for your collective wisdom. After my 2 surgeries I have been recovering really well and almost have complete movement in my arm. It was somewhat distressing to speak to my surgeon 2 weeks ago to discover that, after my last operation, he didn’t get all the clearance he wanted. Ideally they want 1mm around the cancer and he only achieved 0.5mm. Therefore he said he could not rule out a mastectomy after all. However of course, there are no operations right now, so I need to go for 3 weeks of radiotherapy + 5 boosters, all in all a month, when I really would like to avoid the hospital. Anyway, I am feeling better every day and have been exercising daily and practicing yoga (which I really like). What I mean is that I think I am doing the best I can to get my immune system back up to its strength.
My question is about mastectomy. As you know, I really wanted to avoid it but I don’t think I want to risk doing this all over again just to keep my breast. My oncologist said that because of how small I am, they might not have an option to use my tissue for a reconstruction. I don’t think I want to have an implant. Is it the case you need to have further operations down the line if you have an implant? How easy is the recovery after a mastectomy? I would do this 3 or 4 months down the line as now they are not offering because of the Coronavirus.
Any advice and experience with mastectomy or reconstruction greatly appreciated.
Much love to you all,
Thank you for your reply it means a lot to me to see how you have all have got through this treatment.
It definitely feels strange on the othet side of the fence so to speak. I find myself subconsciously checking the medication in when having treatment. Although i dont know much about oncology or chemo as my back ground is district nursing for the last 30 years. Just feels hard psychologically to not be able to help out now when needed.
Bloods are still taken by the phlebotomy department but have given us a time visit now instead to try to avoid further contact with other patients etc. Its feels strange going by myself too but totally understand the reasons why. The safer and less risk the better obviously .
I have spoken to oncology team and for my next appt on 6th April this will be done by phone consultation which is much better than sitting in a waiting room.
On a happier note my vegetable hamper arrived today and like you im trying to work out what meals to cook to save any waste.
Glad to hear you havent needed to take much analgesia so hopefully on the mend now so you can relax and get back to some normality. Pain is awfully debilitating and i dont think u can appreciate it until you experience it personally. Hopefully your tape will be fine too.
Take care and keep safe .
Thank you for your support everyone on the chat .Its really is appreciated as it makes me feel that im not experiencing this dreaded treatment alone and the information you share is invaluable.
Love Daisy xxx
I do feel for you having to go in for treatment but it sounds like you are being as careful as possible as are the nursing staff I am sure. Its interesting isnt it being on the other side of treatment? The 24 hour tape was fine - completely forgot I had it on most of the time the only issue being I couldn't shower. I don't know when I get the results - presumably they will get in touch only if there is a problem. I still have some chest aches from the pneumonia but have not taken any analgesia for 2 days now so am pleased with that. Still coughing a bit but nothing has changed.
My first veg hamper arrives today - quite excited! We used to have them years ago and its always a challenge using it all up as the list of what my husband doesn't like is long......
Re your queries - I can't help with either I am afraid as neither were in my treatment pathway. Hopefully someone who can help will come back to you.
Please keep very safe - do you have bloods on the chemo unit or in phlebotomy? If the latter, if its anything like ours they will have to do something about the waiting room.
Stay safe everyone. Much love xxx
I can understand having the message may feel especially when finishing treatment on Friday. Its such hard times . Hope your 24 ECG results are ok. I totally understand what you mean about hospital. It all feels sureal. I have ordered a meat hamper and fruit hamper to be delivered to try to minimise risk and save anyone unnecessary shopping .I was at Newcross yesterday for my chemo and although business as usual .i was so aware of keeping my distance from other patients. I didnot use the table and limited contact as much as possible and was using handgel. Nurses were trying to keep the 2m distance from each other as much as possible in trying to carry out their duties. Im just glad that i havent got to go again till monday for bloods then chemo next wed.
Can i ask if anyone knows how far into treatment did u get a progress scan ?
I have also had appt to attend the genetics centre as anyone any experience of what to expect from this ?
Hope you are recovering well from your surgery Lisa ?
Stay safe everyone
Love Daisy xx
Hope you are all well. I too got the message and was a bit upset by it - I was discharged from oncology effectively on Friday so to get that message on Monday was not great. Looking at the link that someone else put on here I do not feel I am in the category and they did say that they would have collected up more rather than less people. I have opted out of the text messages.
We are self isolating as is everyone else - we, like many of you, live in a tiny village so can walk without meeting anyone at all or just one or two people. I have arranged to have a weekly bread/milk/egg delivery and a weekly veg box to cut down the amount of times we need to go shopping as I think that is the time that is the most risky.
I had to pop into the hospital yesterday as I had a 24 hour ECG so had to take it back - it was quieter than a Sunday, almost like everyone is holding their breath. No one in outpatients, ED empty (where are all the people that are normally in there)? I saw a friend from when I worked there and we had a conversation (2 metres apart of course) and she said it feels like the calm before the storm. I scuttled in and out not touching anything and really the overwhelming feeling was sadness.
I particularly feel for those on active chemo at the moment - my heart goes out to them as I cannot imagine how anxious they must be.
Sending much love to you all - we will get through this. xxxxx
Dear Julie and Shi,
Thank you so much for your replies. Yes, I have received all the messages and they are all rather frightening. As you I am not taking this lightly but one must strike a balance between living a normal life (well rather restricted and unusual) and not being able to hug the people I love is too much for me!
Thank you, that’s a good point to think that 1.5 million people are getting the same texts. I also managed to finally find a delivery for the end of next week, hurray!
Lots of love to you all and I will be in touch again soon as you always cheer me up!
Hi Hollyleaf, and everyone else.
Yes, it's very scary isn't it. I have also received the "high risk" text and all the follow-up ones (5 so far) since. The most recent suggests packing a bag in case we have to go into hospital - I found that one particularly upset me. I imagine all of us on this thread have?
I'm trying to keep in mind that those texts/letters have been sent to 1.5 MILLION people, many of whom are at a much higher risk than us. A friend of mine with MS, for example, has received one although she isn't on any specific medication that reduces her immunity. I too am still sleeping next to my husband, eating with him and my (adult) children, and not isolating myself from them at all. Everyone is being very careful with handwashing etc, and mine are getting raw with it! The only time I'm leaving the house, like you, is to walk the dog and we live in a village surrounded by countryside so I'm keeping my distance from everyone. We can only do what we can, and trust in the NHS.
It's hard, but we'll all get through this I'm sure. It doesn't seem fair that we have the coronovirus to contend with as well... but forums like this are great and help us not to feel alone.
Take care, with all good wishes, Julie x
❤️Hollyleaf, think everyone is concerned so you are not on your own at all, don’t forget the helpline is available 10-3 to speak to a nurse on here, they might be able to advise you more on precautions. Have you had the nhs separate cutlery etc one, it looks like you have, you can be vigilant and do your best ❤️ keep posting on here there is always 👭 💕💕✨✨Shi xx
I hope you are all coping with the pandemic. I have gone through big swings in my mood from feeling positive as we are all together at home at the moment, to feeling rather low when a text from the NHS alerted me that I am in the highly vulnerable category. If I followed their advice, I should be eating on my own in my bedroom, sleeping separately in a room on my own and not hugging my children. I honestly cannot do that although, of course, I am not leaving the house except for walking the dog but we live in the middle of nowhere. The bit that worries me is that I cannot get anymore online deliveries- I am sure this is a very common problem. I have tried every single supermarket! My husband will have to go shopping next week and that’s where I fear he might catch the virus.
Sorry, I know it’s me moaning again, but this time I have been so worked up, I can’t even relax, I am not able to let go of this. Today was a bit better because I have tried to limit the time when I look at the news. In general the text message has just generated fear in me.
I am healthy apart of course that I had my last chemo two months ago and so I am still immunosuppressed. At least the weather has been glorious and that always lifts my mood. I am also enjoying having my family around me as I have been so much on my own in the past six months or so.
Take care you all, I hope we can all get through this new challenge together,
I don't know if it differs with different regimes, but when I missed my two (they happened to be Nos. 3 and 5, of 6 in total) I just had those a week later and then continued on and had all 6, just delayed. I also had blood transfusions after Nos. 2 and 4 - the day after the chemo was given - as they were concerned about recovery. I was offered/it was suggested I had a third blood transfusion after No. 6 but I refused and was just told to keep an eye on things and to contact them straight away if I felt extraordinarily tired or breathless. I got through it without having that final one. And, just to say, my tumour reduced from 3.5cm to 3mm during the chemo which then enabled me to have a lumpectomy rather than mastectomy. So, to reassure you, the delays didn't have any adverse effect on the outcome. The whole series ended two weeks later than originally planned, due to the two delays.
My regime was 3-weekly Docetaxel + Carboplatin + Herceptin + Pertuzumab, with Zoledronic Acid at 6-weekly intervals. All those at the same time, each time. I'm now, after surgery and radiotherapy, having 3-weekly Herceptin until the end of August + Zolendronic Acid at 6-monthly intervals for 2 years. Oh, and I've just started the hormone treatment tablets, and the prescription has been given "for at least 5 years". It seems like an awful lot of drugs for an awfully long time - but the alternative doesn't bear thinking about, and the worst bit (chemo) does come to an end.
I hope that's helpful, but it must be worrying that your oncologist didn't know! We all seem to have such different combinations of drugs at different intervals (I never had any weekly ones, but know some on here did). In case it's relevant my tumour was Triple Positive. I found the BC nurses to be much more helpful than the oncologist - they understand how confusing it all is (and the fact that our minds are in panic mode whenever we're being told stuff by the oncologist), and spent time explaining things to me when the oncologist only really seemed to be interested in whether I was coping with the side effects so she could tick them off her list.
Good luck with your treatment tomorrow. It's SUCH a strange feeling to be pleased you're going to have it because you thought it might be cancelled, isn't it?!!! That will be another one done, though, after tomorrow. Stay strong - it WILL come to an end.
Sending big hugs, Julie x
Thank you for replying and i hope you are doing ok.
I hope you get on ok tomorrow with your appointment.
The hospital today was quiet and was able to keep a distance from others.
Hope all goes well and stay safe
Love Daisy xx
So glad your able to have your treatment on Wednesday. I’m sorry I’m not sure about how that works as I didn’t miss any of mine. I would think you would start where you left off but I’m not 100% sure. Hopefully one of the others will be able to jump on here and help out 😘
Just wondered if anyone could answer
My question. I have missed x two sessions of Chemotherapy due to low white cells. My question is do u carry on through the regime or do u start on the ones you missed.
I ask the oncologist today as she didnt know ! Which hadnt inspired my confidence. My WBC have increased so in can have treatment on Wednesday which im pleased about .
Hope you are all keeping safe
Love Daisy xxx
it’s lovely to hear how everyone’s doing.
It is all very worrying and Daisy I totally get that your feeling very anxious about having to go into hospital for your bloods. Iv got my follow up appointment with my surgeon on Tuesday and I’m feeling very much the same about having to go into the hospital.
I agree with you Julie that it must be very hard for those newly diagnosed, I can remember how scared I felt never mind with all this going on too.
Keep safe ladies xxx
Hi Julie and Everyone
Thank you for your reply and support it means a lot to me.
I feel very anxious at the moment due to the virus. I feel scared to go into hospital tomorrow for my bloods and then for the oncologist appt but also feel more afraid if they say my wbc is still to low as i feel that my pain is increasing the last week .
Its such a worrying time for everyone let alone our wonderful Nhs staff working around the clock obviously as well other key workers such as retail staff etc.
Hope you are all keeping ok and staying Safe.
Love to you all
I was very pleased to hear many of you are doing well, even with the few hiccoughs you've sadly had.
Hollyleaf - I've just (last Friday) completed my 3 weeks of radiotherapy. The way the hospital dealt with it changed (although NOT the actual radiotherapy) as Covid 19 became more worrying. During the last few days, the receptionists retreated to their offices and everyone turning up for radiotherapy had to phone on arrival, using a dedicated phone, to book in. There was hand sanitiser and antibac wipes next to the phone, which everyone used before and after using it. And we all stood around 2m apart in the queue - not told to... it just happened as people are being sensible. They also asked that no-one other than us being treated entered the hospital - my husband stayed in the car. You obviously need to be careful, but the staff are 100% "on it". The radiographers also confirmed that radiotherapy does NOT reduce your immune system (at least, not if you're only having on breast(s)). The saddest thing was seeing all the poor NHS workers who are already looking so tired as they're doing long shifts - such amazing people, staying positive and cheery for all us patients. When I mentioned how grateful I was to one of the radiologists she said it was lovely to hear that, as not many people are thinking about the risk staff are taking to continue with our treatments. She had tears in her eyes, but we both stiffened our upper lips and wished each other luck.
Radiotherapy was a breeze for me. I didn't have any side effects, although I'm told they could appear in the next 1-2 weeks. I'm more tired than usual, but it's been so long since any of us have felt 'normal' I'm not sure I can gauge it any more!
Daisy - I had two delays during chemo (a week each time) due to low haemoglobin and platelets. Although I found it extremely frustrating, I think the extra time meant my body was able to heal a bit more so the re-arranged treatments didn't affect me so harshly. And, like you, it felt like it would never be over... but it did happen.
It feels very strange now as I've sort of been socially distancing myself for the last 6 months or so! (I was diagnosed at the end of June last year). I also isolated for the worst chemo days, so what we're all now being asked to do just feels like an extension of that! I'm sure the hand-washing instruction hasn't been too difficult for any of us... since we and our families have already been doing that during all our treatments anyway.
Stay safe everyone. I was only thinking earlier today how awful it must be for anyone who is receiving a similar diagnosis to ours right now. We all know how scary those first few weeks are, and if this virus had been around then I know I'd have been even more frightened.
Stay strong. Lots of love, Julie xx
So my news, I can finally see tiny hair coming through the longer softer and weirdly white hair. The new tiny hair looks my normal colour: hurray! Also, finally eyelashes (minuscule but definitely there) and eyebrows are re-growing. I think my hair growth must be slower than on average but now I can see everything slowly reappearing. It’s such a relief!
I have an appointment with the surgeon to check the results of the second operation on the 2nd April, but I really hope I will be able to do it on the phone. I am fairly paranoid about going to hospital at the moment. I also want to ask about radiotherapy. Is it necessary? It just strikes me that the hospital is, I don’t want to say unsafe, but not somewhere you want to be right now.
Lisa so sorry you had to have your wound drained. I had a very large swelling but it disappeared on its own about 5 weeks post surgery.
I always feel I am fairly behind everyone with treatment but having read that you Wolvesgirl, are six weeks from your diagnosis, made me feel better. I was diagnosed in July!
My warmest wishes to you all and keep safe,
Glad you are feeling better and hope each day u keep improving from the operation. Just rest and stay safe.
Love to everyone
Daisy I’m so sorry you’ve had to miss 2 cycles I know it must be so frustrating. I also totally get how anxious you must be feeling right now with all this going on and still having to go in for treatment. I finished my chemo 2 months ago now and I’m still very anxious about picking anything up.
Wolvesgirl I’m glad your getting there with your recovery from Phnemonia. I think your totally right with not wanting to be front line, you have absolutely gone through enough! Just stay safe!
Thank you Again Shi for the tips about the eyelashes, mine are still only stumpy but there getting there.
stay positive everyone and stay safe
Thank you for your reply. Im a nurse and have Working in the NHS for the last 30 years. I feel so sad that i cant help in this crisis but i would say to you after all you have been through u need to keep yourself safe .
So glad to hear that you have come to the end of your treatment and it really helps to know that there is a end in sight Thank you for sharing . I just feel so anxious at the moment with everything and it feels never ending to get through this chemo .
Take care and keep Safe
Love Daisy xxxx