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Confused, lonely & worried

98 REPLIES 98
DestinyIsAll
Member

Re: Confused, lonely & worried

Hi Jo,

My private message function on here isn’t working, constantly getting a message saying I’ve reached my limit of messages..weird as I haven’t sent any others. I’ve FB messaged instead. Louise x

Jo22
Member

Re: Confused, lonely & worried

Awesome that you are feeling brighter Claudia. Sunshine really helps!!!

Vorsprung durch technik, Louise, you're getting the best German breast! I work in the pharma/ medical industry and if the Germans make it, it's always to the highest standard!!! Fingers crossed they don't make you isolate too long but super fingers crossed for the 10th going ahead as planned.

Jo xxxx

DestinyIsAll
Member

Re: Confused, lonely & worried

Hi Jo,

Thanks, I’m really glad to hear you’re doing well and going back to work. It helps to keep busy I find, though not currently working my five children do that well enough 😊.

The hospital have actually said nothing at all yet about isolating this time, and I forgot to specifically confirm but I imagine they would’ve said. As I’m having immediate recon the operation this time is led and therefore organised by the plastics department rather than the onc dept so a different team entirely. They said they would phone this week with more details so I imagine they will tell me then, but I’ve been being fairly cautious anyway as I don’t want to risk it so, very minimal going out and generally being careful and my husband has returned to working from home. 

My plastic surgeon is German so was extolling the virtues of the very fancy German implants I will be having 😀

I am getting a bit apprehensive when I think about it and if I dwell on it, now it’s finally getting close.

Claudia..also good to read you are feeling a bit brighter 💐

 

Louise xx

Claudia3609
Member

Re: Confused, lonely & worried

Hi ladies

Louise great news that a date has been given things can now start picking up pace with your treatment which is fantastic 

Jo I'm feeling a bit better, a nice few sunny days helps to lift spirits xx

Jo22
Member

Re: Confused, lonely & worried

Oh great Louise, you have a date! I'll keep my fingers crossed the other surgeon can do that too. Shame about the tummy fat but yes what irony!! I've heard some good things about the implants too so I'm sure they will do a good job. The main thing is getting rid of the cancer as you say. Do you have to isolate for 14 days or will it just be the 3 days like me?

I'm going to work this week to keep my mind busy plsu I'm feeling pretty good right now so I want to make the most of it.

Claudia, I hope youre doing ok?

Jo xx

DestinyIsAll
Member

Re: Confused, lonely & worried

Hi Jo, I read and replied yo your other message before seeing this one. Pleased to hear your surgery went okay. How are you feeling now you’re out of the post anaesthetic fog? 
I now have a provisional date for my mastectomy, finally thank goodness! 10th September. That could change as it’s a two part/two surgeon op with the recon, and the other surgeon is away so have to wait and see that it fits with him. I’m prepared for it to be changed but desperately hope it won’t. 
I was going to have a DIEP flap recon (using a section of tummy skin and fat), but I’ve lost weight in the last year as I was overweight and unfit, and now I don’t have enough fat apparently. Oh the irony.  So it has to be an implant which at least has a quicker recovery even if it means a less natural appearance. The aesthetics matter, but are not a priority to me, the main thing is just to get the cancer gone. xx

DestinyIsAll
Member

Re: Confused, lonely & worried

Claudia, I’ve had some days like that since diagnosis. They do pass for me, but I know what you mean. A couple of times the kids have made a flippant remark about the future and I’ve thought, ‘will I even be here?’ It’s just the uncertainty and anxiety, because statistically our outlook is good but it’s hard to reconcile that when you’re going through it and naturally have so many worries. 
If things don’t improve maybe talk to your GP 

I‘m sorry about your lovely dog, I’m a pet person too and we recently said goodbye to one of our cats that we’ve had since the children were little, they’re young adults now. Animals have huge character and personality and are an important part of the family. It’s so hard to lose them at any time, but when you’re going through this it’s doubly hard. 14 is a good age and you will have some wonderful memories, but lots of love as I know how hard it is to say goodbye. 💐❤️

Jo22
Member

Re: Confused, lonely & worried

Oh Claudia, I'm so sorry you're feeling really down. And I'm sorry about your dog too, that's so difficult. You're bound to have bad days, I think we all are and it's justified and acceptable to be upset. Letting it all out can help a lot.

Sending you lots of hugs and happy thoughts to help you through the next few days. I'll be thinking of you.

Take care and reach out if you need a shoulder.

Jo xxx

Claudia3609
Member

Re: Confused, lonely & worried

Hi jo

Accidentally read a not very nice article about a lady with breast cancer which put me on a big downer at the weekend, we bought a car on a 3 year deal and it made me seriously question will I even be here for that long plus our 14 year old dog is near his time so agreed on Sunday that we need to have a chat with the vet. All of which resulted in me sobbing for hours at my chemo session 😬 I've not cried like that since being diagnosed but I honestly couldn't see a way past this horrible disease.. So trying desperately hard to get up from this low state I am in at the moment.

Sorry its all a bit doom and gloom with me at the moment 

Jo22
Member

Re: Confused, lonely & worried

Hi Ladies,

Good to hear from you both and sorry for being a bit absent. My surgery went ok but I get quite a post-op anaesthetic fog and tend to sleep it off which seems to have worked as I am back in the room today!

I'm so pleased to hear your results Claudia, shrinkage and no spread, yay! How did chemo go yesterday? Are you still feeling as tired? I hope you're doing ok? 

Louise, how's the underarm, mine is improving daily now and the 2nd surgery was fine, it's sore but nothing like the first op. And you have your recon meeting tomorrow I think? I really hope that goes ok. I'm pleased you got to go out too, there nothing like a good pud!!! Funny what small things matter. 

Results this Friday or next, I'll keep you posted. Look forward to hearing from you both too xxxx

DestinyIsAll
Member

Re: Confused, lonely & worried

Hi Claudia,

I’m so pleased to hear your good results. No spread, which is such a relief and weight off your mind, and, tumour shrinking, as you say, a step in the right direction, and that’s always what we need. I’ve been feeling a bit fed up tonight, so I’m really pleased to read your positive message. Have a nice treat to mark the good news. We went to the pub last night for a spontaneous dinner (Eat out to help out!) and it was lovely, I’ve been ‘healthy eating’ so nice puddings a bit thin on the ground lately, I really bloody enjoyed it 😁 

I just watched Victoria Derbyshire’s BC vlog on iPlayer. If you haven’t watched I found it insightful and actually quite positive to watch. Louise xx

DestinyIsAll
Member

Re: Confused, lonely & worried

I keep missing messages as I no longer get notifications 😊

Good luck tomorrow Jo, I very much think of us as in it together, so I’ll be thinking of you and hoping it goes well. 💐. Louise xx

Claudia3609
Member

Re: Confused, lonely & worried

Hi

Hope tomorrow goes smoothly for you Jo, I'll be thinking of you 

Louise I hope the pain under your arm eases soon

 

I had my mri results yesterday and there is some slight shrinkage of the tumours, the hospital are happy as its a step in the right direction. Most importantly the scan is clear no spread thankfully I'm relieved about that. I'm due at the hospital tomorrow for my bloods ahead of Mondays chemo so I will mention to them how I've been having awful lower back pain since my last steroid injections xx

Jo22
Member

Re: Confused, lonely & worried

Hi Louise,

Yes agreed re a coping mechanism, it certainly helped to focus on other things. 

Sorry to hear your underarm is hurting too. I asked the nurse and she did say it can take a while and not to over do it. It probably didn't help making new garden furniture at the weekend then - oops! 😅

Yes I have said to a few people I'm an old pro at this surgery malarchy so nothing to worry about and I'm not. Much different from last time thank goodness.

Best of luck on the 26th if I don't get chance to message beforehand, hopefully you'll get a clear plan of the next steps. 😊

Take care,

Jo xx

 

DestinyIsAll
Member

Re: Confused, lonely & worried

Hi Jo,

Glad to hear you’re at work and have the distraction of something to focus on, and it sounds like you have nice people there too. That must help passing the days till your next surgery. 
I said exactly the same about a ‘false’ persona to a friend the other day, she’s very perceptive (and has been through BC with her mum and life long closest friend) and she felt it wasn’t false, but was a very real part of managing and getting on with life. My view is that we we do what we need to do to, to help our mental health, to be ourselves, to adjust and cope, to help our families - that’s real 😊
I’m over two weeks post lymph node op and my underarm is also still very painful, wound is okay but deeper inside, so I’m also glad too there’s no going back in there. 
You know the op process now, and it’s another step to being ‘clear’, a few more days and the surgical side of things will be behind you. 💐 Lx

Jo22
Member

Re: Confused, lonely & worried

Hi Claudia,

I know it seems crazy that there are so many different options open to them for treatment but I guess that's a good thing too. It's certainly much more complex than prostate cancer which my husband had a couple of years ago. I keep ribbing him that he got the easy cancer!!  😉lol!

Hope that the MRI goes ok today and there's plenty of shrinkage.

Take care,

Jo x

Jo22
Member

Re: Confused, lonely & worried

Hi Louise,

That's awesome news!!! Hurray, I'm really pleased you can have the immediate reconstruction that will be much better for you, won't it. Shame its still a few weeks off but if they've said it hasn't grown then that is great news too. Sorry that it might still be chemo, that's my concern at the moment too.

I've spent the last week at work, seeing my lovely colleagues and generally behaving like there is no cancer diagnosis. It was nice even though false but it felt good to be just me, not poor Jo with cancer for a few days.

Covid test tomorrow and then 3 days isolating followed by surgery on Friday. Not worried this time really, I'm just pleased they're leaving my lumph nodes alone as that hurt for a long time.

 Jo xx

 

 

DestinyIsAll
Member

Re: Confused, lonely & worried

Hi Claudia,

From the start everyone, either my BCN or friends who have been through it, said don’t compare your own treatment to others as it differs so much from person to person. To add to that, though I believe care is standardised, I imagine time frames and approach differ to a degree from hospital to hospital and obviously Covid is complicating things too. Similar processes, but in a different order dependant on the individual factors.  

I’m trying not to stress but it’s hard isn’t it? The doubts about spread, the delays, all the ‘what ifs’, it all niggles away.

Because of all the stages of diagnosis (u/s biopsies + wait, MRI + wait, another u/s needle aspiration + wait, node biopsy + wait, all taking so long, I will be near enough 3 months from initial diagnosis by the time I have my mastectomy, with no other treatment beforehand. That just doesn’t sit well but I have to accept the process. My onc did say he looked/assessed during my node biopsy and felt there was no change in the size of the tumour.  I know I can ask for a referral elsewhere but this will only delay further so not much point and I do like my onc team. It’s just the anxiety and time frames making me doubt everything and you too I imagine. Normal I think. 

i hope you can have as relaxed a weekend as possible and I’m sending ‘shrinking’ vibes 😊 and luck too for the best results for you from your MRI on Monday. Share here if you have more worries. Louise. xx

Claudia3609
Member

Re: Confused, lonely & worried

Hi Louise 

That's fantastic news about the lymph nodes being clear, hold on to that as a big positive. I can't however fathom how so different treatment plans are for everyone, I am having chemo first due to my oncotype score then a lumpectomy which will include a sentinel biopsy and then rads.

I am due to have an mri scan again on Monday to see if the chem has shrunk the tumours but I've got my self into a right tizz thinking what if they tell me it's spread. My first mri scan and the diagnosis stage showed no spread and no lymph node involvement but the gremlins still lurk. I think it is because we don't have the full understanding of cancer that the medics do  and I have read where others are concerned over things but their oncology team aren't. 

 

I'm probably waffling now, sometimes I think it'll be okay as it can't spread that quick between scan and chemo starting then I start to worry about it all xx

 

DestinyIsAll
Member

Re: Confused, lonely & worried

Morning Jo (and all on thread 😊) How are you?

I wanted to update as I now have my node results. No sign of spread to lymph nodes and no radiotherapy required. Oncologist did say there is still risk of spread through blood, and I may still need chemo, they will assess that when analysing after mastectomy and decide then along with Oncotype results. If I need chemo then I’ll be prepared. I know I’ll be on tamoxifen anyway as I’m ER+.

No radio means I can have immediate recon which I’m happy about. Breast surgeon is currently on leave, but I have an appointment with him on 26th Aug to discuss recon options and my onc said mast op probably 2 weeks or so after that.

I’m still very worried about other spread so I don’t feel quite so relieved as I thought I would. I need to focus on this result being a good thing and not the doubt/worry I still have, as no lymph spread is obviously still very positive news.

Anyone else have any news or worries to share? ❤️

Louise xx

Jo22
Member

Re: Confused, lonely & worried

Hi Louise, I hope you're having the most wonderful weekend celebrating with your family! 

Yes the soreness is wearing isn't it and my armpit is still giving me some trouble, less every day though. 

I agree re: asking the questions and not feeling bad about about doing so. I feel so much better since getting the next steps outlined more fully (I must be a control freak 😉) and even better now they have told me I don't have to self isolate until after my covid test on the 18th ready for the 21st surgery date. Yay what a relief! We went to coast but it was heaving so didn't stop and drove up the coast a little but it was all very busy. No ice cream either!!! Very disappointing lol - but nice to be out and about. 

Keeping my fingers crossed for your results this week. xxxx

Jo22
Member

Re: Confused, lonely & worried

Hi Claudia, glad you got your treatment on Monday & a positive response about your back pain. I hope you manage to rest during this round of chemo and feel strong soon. xxxx

DidntCthatcoming
Member

Re: Confused, lonely & worried

Hello Claudia, hope you’re doing ok today.  Have you heard of ‘Life Kitchen Cookery’? Really lovely guy set up that charity. They have recipes specifically for pts going through Chemo with altered taste. Apparently all to do with umami flavours? (Found them on an episode ofYou,Me,BigC podcast).

Best wishes, 
S

DestinyIsAll
Member

Re: Confused, lonely & worried

Hi Jo,

I empathise with feeling down, I’ve been doing pretty well in that regard the last few days, and last night for some reason, just felt really down. Still a bit tired from anaesthetic and meds and it’s only natural I think for the emotions to take over again at times, even when we think we’re doing a bit better. Okay today again though. I have a lovely long weekend coming up with birthdays to distract me, my eldest turns 25 and he’s just got a new job after being out of work through Covid, so I’m really pleased. My son/daughter twins turn 20 also. Maybe a little lower key fun than usual but still nice. 

I’m more sore now, 3 and 4 days in, bruising coming out maybe? But it’s not too bad, it’ll be on a different level with the mastectomy I’m sure. Have to get in to ‘rest’ mode and I’m not great at that.

I understand your feelings about being low as you had a lot of uncertainties and worries, but what you go on to say all sounds much more positive and I’m really glad to hear this. I’ve phoned my BCN at least 3 or 4 times with my long lists 😊 and she just goes through with me until I’m feeling some reassurance. She can’t always answer everything, but even when I don’t get a definitive answer and I have to wait until I see my onc, I sometimes get a better perspective from talking to her which can help reduce worry in the meantime. But your treatment path/surgeon/isolating news sounds like it’s all really helped give enough reassurance that you can relax a little and have some much needed family time.

We’re not far from the coast in Suffolk, used to live a few minutes away but moved to help my husband’s commute, I miss being so close. Enjoy a lovely walk.  I’m still isolating so have a huge coffee ice cream for me ☺️.

Louise xx

 

DestinyIsAll
Member

Re: Confused, lonely & worried

Hi Claudia,

I’m glad you got your chemo in..all steps nearer the goal of end of treatment - so much time passes and often delays so I just want to keep things moving along, you’re probably the same. 

It’s good to have reassurance about your back. I think we all read too much into any twinges, naturally I think as we’re so anxious. Like Jo I’ve found my BCN helpful at answering queries in between appointments. Try to relax and rest it, maybe some gentle exercises? Best wishes x

Claudia3609
Member

Re: Confused, lonely & worried

Hi ladies, I did manage to get my chemo on Monday thankfully and had a chat with the oncologist about my back which he felt was more muscular than anything else. I must admit this round of EC has been different this time, I'm so tired this time around so can't get much exercise in to help my back but I'm not experiencing the metallic taste too much this time as it drove me mad on my last session. 

 

Hope you're all well xx

Jo22
Member

Re: Confused, lonely & worried

Hello Louise! 

Great to hear from you! I'm so pleased it went well on Monday, that's really good news. The anaesthetic knocked me out for a few days too, I was glad when the fog lifted 😁

Fingers crossed for your results coming back in time for Tuesday and all being clear. 🤞 Shame about the doctor being away but yes I guess it is better that they get a holiday!! I am really pleased they'll do an immediate reconstruction for you as that is something that appears to be uncommon during this situation, that's a real positive.

Are you sore? How are your exercises going? I found them quite hard to begin with but hang in there they definitely get much easier. I do have a lump where my incision is but he nurse says it will go down and not to worry.

I've had a bad few days, just been really down in the dumps as I couldn't get hold of any other consultants to get a second opinion about my recent results etc. even through my private healthcare as they were all on holiday! And what with another imminent self isolation I was really low. BUT then I spoke with my breast nurse and she answered all my questions around the DCIS and recurrence rates and I feel that the path they have chosen is correct. Plus then they called yesterday and confirmed the next surgery date with the surgeon I wanted at a local private hospital AND I don't have to self isolate until after my covid test 2 days before - whoop whoop!

So as a long awaited outside treat we're off to Whitby in North Yorkshire today for a walk on the beautiful beach and have some fish & chips!!

I hope you can get lots of rest and sleep! Enjoy the weekend. Talk soon xxxx

DestinyIsAll
Member

Re: Confused, lonely & worried

Hi all on our little supportive thread 💐😊

I meant to update yesterday and got waylaid. SLNB (Mon) went well, pain easily manageable (some goodly drugs). Home the following afternoon, stay only required because of unrelated medical complications. Just a bit out of it for a couple of days because of anaesthetic and no sleep in hospital. A few days post op isolation then I’m freeeeee!

My onc is hoping my results will be back for their next MDT, Tues 11th, and get quickly on with next stage depending on results, he believes a negative node result is likely (🤞) and we can go straight to mastectomy and simultaneous reconstruction (change of plan with a delay for rad if positive), but plastics surgeon will be away on leave so that will delay things a couple of weeks. The man is allowed a holiday I know 🙂 but just all the waiting....

How is everyone else? 
Louise x

Jo22
Member

Re: Confused, lonely & worried

Hi Mel, oh that's interesting so it didn't show up on any of your scans either? I'm really worried that if they didn't know it was there how will they know they have got it all or that it isn't in the other breast? And if you are "prone" to DCIS will it just come back after the radio? Did they explain that to you? I'm so confused about this diagnosis....

Best of luck with your injection today xxx

Jo22
Member

Re: Confused, lonely & worried

Best of luck today Louise, hope you managed to get some sleep xx

Jo22
Member

Re: Confused, lonely & worried

Haha yes Dad's are good at that. I'm pleased his pep talk worked. I'm a bit the same was active before but now it's a real effort to motivate myself to get out & about.

Best of luck today xxx

mel71
Member

Re: Confused, lonely & worried

Hi Jo,

DCIS was never mentioned until the pathology report after surgery. Radiotherapy is now finished and I have my first Zoladex injection tomorrow then letrozole added in a month later. 
hope you get all the answers you need 

 Mel xx 

DestinyIsAll
Member

Re: Confused, lonely & worried

Hi Claudia,

Never too old for a telling off from your dad 😄 Yes I’m in for SLNB tomorrow, in mid morning and on the afternoon op list. 

Louise x

DestinyIsAll
Member

Re: Confused, lonely & worried

Thanks Jo,
I’m not sleeping well at all at the moment so I’m not expecting to, might be a long night. I don’t feel too anxious though, I think all of us by this stage just want to get on with things. 
Thanks for thinking of me, and I’ll update soon. Look after yourself, and the same to everyone on this thread.  
 ❤️

Louise x

Claudia3609
Member

Re: Confused, lonely & worried

Hi jo, yes I'm feeling much better today, my dad rang me last night and gave me a good telling off. He said it's because I'm not as active as what I'm used to be and now my back is playing me up. He told me to get out for walks and do some stretches to keep my back from being stiff.

He's right of course I was so active pre lock down and pre cancer that I didn't suffer much from my back. I realised that I'm barely been doing anything whichwwill invariably cause my back to seize up. so I went out for a couple of power walks today, did some yoga and generally made sure I didn't sit for long periods. Each time it did ease my back pain and lifted my mood. Sometimes a good telling off is what is needed 👍

My finger is feeling much better today and last night was the first good night's sleep I have had in the past 4 nights, so I'm hoping they will allow me to have chemo round 2 tomorrow. 

I hope some of the replies on here have helped you with your next steps and I'm sending you a big virtual hug 🤗

Louise is it tomorrow your having your op? If so I will be thinking of you xx

 

Jo22
Member

Re: Confused, lonely & worried

Thanks S, I'm sorry you have been through a similar path but I'm grateful for your advice.

They haven't offered a mastectomy at all for the 2nd op only the WLE/shave. Sounds like you have a good few options for the future which is great, I think I need to ask about these options too.

Same as you, no onco dx test yet until after the 2nd surgery results but it will most likely be done. Great that yours came back low enough not to have to go through chemo.

Best of luck starting tamoxifen & radio this week. Keep in touch & take care.

Jo xx

Jo22
Member

Re: Confused, lonely & worried

Hi Mel,

Thank you and yes clear lymph nodes is great. So did they know there was DCIS in there before your surgery then? My surgeon says they didn't know it was there. Which makes me worried that they can't detect it in my breasts, what if it is in the other one too? 

They won't give me oncotype testing yet until they have the 2nd path results.

Are you finished with your treatment or do you have to have more radiotherapy?

Take care, Jo xxx

Jo22
Member

Re: Confused, lonely & worried

Hi Claudia,

Hope you're doing a bit better today? Stress is a nightmare. When my husband was diagnosed with prostate cancer a while back all my chest muscles spasmed and I looked like the incredible hulk! It took a while to settle down but I thought I was having a heart attack at the time.

I'm sure you've tried all sorts of things and it is difficult to switch off from all the cancer noise isn't it but maybe a nice long bath might help. 

Take care,

Jo xxx

 

Jo22
Member

Re: Confused, lonely & worried

Well I think you come across brilliantly!  It was just what I needed to hear, thank you.

My husband is really well now and didn't suffer too badly, thankfully but yes I do feel like we're being challenged at the moment!

I'm sorry your treatment plan is taking so long you really have had a very long delay I guess mainly due to your other illness. It must be very hard on you and your family. But tomorrow is the start and then it will move quite quickly all being well.

Best of luck tomorrow & let me know how you get on.

Jo xxx

DidntCthatcoming
Member

Re: Confused, lonely & worried

Hi Jo, 

So sorry to hear you need the 2nd surgery. I really feel for you. I had the same with about a month between surgeries (May, June) as my tumour was at the edge of the path sample. It felt like a backwards step to me at first but the best & brilliant news is your nodes are clear.  So I tried to think of it as a really rubbish side-step having already climbed a mountain and made awesome progress. My understanding when they go back to do a ‘shave’ is that it is a tiny amount and if it is DCIS that doesn’t increase calculated tumour size or make it more likely to need chemo. 
Like you I was offered mastectomy at that stage but also offered another WLE. And a definite mastectomy if the margin couldn’t be cleared a second time. The surgeon said I could change my mind at a later date if I couldn’t live with having breast preserving surgery and if I was very concerned with recurrence. My breast unit only does the implant reconstruction without other options ( they told me that there are different options available at larger centres) Such an individual decision and I’m aware how one can’t always self-check for Lobular BC.  At this point I needed to trust the multi-disciplinary team and decided that they wouldn’t have offered the 2nd WLE if it didn’t have a good outcome.  They offered the OncoDx Test but refused to do it until after the 2nd path report was in. 
I didn’t know what the second surgery would involve. The surgery was shorter in duration and at least I knew the hospital set-up. I found physical recovery was easier as they didn’t touch the armpit so I could keep better mobile. Mentally I found it much tougher (am thinking of that 3rd picture in the cartoon!) and I wasn’t as physically active ready for the second surgery, totally my fault. 
I made a massive effort in the small window between surgeries and self-isolating to catch up with my closest people (in the garden, at a distance) but clearly was very cautious as the last thing I wanted was any delay due to Covid. 
Again there was no firm decision about the benefit of chemo throughout all of this. It felt to me that my whole life was on hold and I had a lot of anxieties about expectations to return to work. I sought counselling at this point which has helped me stop darker ‘What if’ thoughts but also has let me go with my feelings when it feels right. (I used Breast Cancer Haven for counselling, who do sessions by Zoom).
I honestly think with little steps and support, you will get through anything. 


My understanding is that in NICE guidelines for follow-up of Lobular disease there is a recommendation for annual MRI (in addition to mammograms) which should be reassuring.  My surgeon has not agreed to this yet so if it is not available next year then I will ask for a second opinion referral. The OncoDx score came back low-ish so they didn’t offer chemo. The adjuvant treatment is our future protection so I’m working hard on the half-full. Started Tamoxifen and RadioT starts this week.  
Sending best wishes and thinking of you x



S

 

 

 

 

 

mel71
Member

Re: Confused, lonely & worried

Hi Jo,

that was definitely a mixed bag of results but the very positive bit is the clear lymph nodes.  
My tumour was much bigger than expected (With DCIS in the middle) so I had what they called “shaved” areas. Thankfully they did this at the first surgery. As the margins wouldn’t have been clear without the shave they did five boost sessions of radiotherapy to the tumour bed. 
Covid rules just add extra stress to an already stressful situation. 
Second opinions and your own research is useful to ensure you are making an informed decision. Did you have Oncotype testing? I found it really useful for making a decision around chemotherapy. 
best wishes

Mel 

 

Claudia3609
Member

Re: Confused, lonely & worried

Thank you, my lymph nodes were clear on my Mri scan 6 weeks ago and I do suffer from back pain occasionally. I have been getting totally overwhelmed by it all recently and can't see a way forward to uplift myself. The current covid situation here in the North West doesn't help matters either. My BCN isn't too concerned about my pain as she said it can be stress related. Thanks once again Kitkat it's nice to know someone else who has had the pains too xxx

Kitkat23
Member

Re: Confused, lonely & worried

sorry Claudia,


Posted before I meant to!

.....then after scans wished I hadn’t asked as my anxiety waiting for results went thru roof....the day after I was told scans were clear, my back pain went.

Maybe your back pain is side effects from chemo??

i hope you able to enjoy your weekend a bit.

thinking of you, sending love x x

Kitkat23
Member

Re: Confused, lonely & worried

Hi Claudia

sorry you feeling really low today.....sometimes it just gets too much no matter how positive you want to be.

i had terrible back pains when I was waiting for my results and when I found out there was cancer in first node, they got even worse.   I asked Onc for a scan and she said I didn’t need one but if it was going to make me less anxious then I could

Claudia3609
Member

Re: Confused, lonely & worried

Hi jo sorry to hear that you need another op but at least you will know nothing is lingering in there. Ive hit a real low today I have had back pain for a couple of days now (since my finger flare up) and I've convinced myself it has spread into my back. My finger is still swollen but no throbbing so that's good news 

DestinyIsAll
Member

Re: Confused, lonely & worried

Things make sense in my head..I don’t necessarily know how they come across 😀 .
I do worry too about the timescales..I totally get that. I was diagnosed second week in June and I’m still very much still in diagnostic tests, and we’re August already. It’ll have been 2 full months by the time I have node results and an actual full treatment plan..then the wait for the mastectomy. The slowness of it is painful though my GP tried to be reassuring about it not being critical so I keep that in mind  

Gosh, your family have had bad luck with your husband’s diagnosis too. This is where we hang on to the fact that BC is very treatable these days - something that escaped me at first when I was immersed in all the fear and couldn’t even think, and still does t be honest in my darker moments. But it should be our reality and the task in hand is to get you sorted. It’ll be months yes, and it’ll be grim at times, but then it’ll be done and you can get back to your life and family.

And thank you for being there for me too, it makes a big difference xx

Jo22
Member

Re: Confused, lonely & worried

God you are brilliant Louise! You put all the gobbledegook in my head in real, normal, reasonable sentences! Thank you for that.😍

Yes, yes and yes to everything you said. I do need to question and it is OK to question, I have to remember that.

The isolation alone doesn't bother me, like you say, it's the possibility of this surgery not getting everything and they say they'll just do another but it will have to be mastectomy and I'm not even starting radio/chemo and hormone therapy until after all that. With isolation included that could be October. And again as you rightly said the confidence in the treatment plan is not there! Gosh this is hard isn't it?!

My husband had to do the antibac washing & sheet changing when he had prostate cancer surgery last year but they didn't make me do that, maybe because i could isolate completely?

I'm here for you when you're out of surgery. And then you have birthdays to celebrate - yay!!! 

Again thank you for your message, i feel a tonne lighter! 

Lots of hugs and best wishes for Monday xxxxx💗

Jo22
Member

Re: Confused, lonely & worried

awesome graphic, I'm usually left but most definitely right at the moment! Thanks L, that really lifted my spirits xxx

DestinyIsAll
Member

Re: Confused, lonely & worried

I’m a realist so my current thoughts on my situation are on the right. 😉

DestinyIsAll
Member

Re: Confused, lonely & worried

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