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i cant get my head around it

9 REPLIES 9
eeyore58
Member

Re: i cant get my head around it

Hi Cybele, thank you so much for the reassurance, i know im probably not the only one going through chemo with chronic itchy skin, just need to hear from people with the same type of thing, if that makes sense, just hope it don't make it a lot worse.

Cybele
Member

Re: i cant get my head around it

Hi Eeyore, I'm sorry you're having such a tough time at the moment. I remember so well the huge confusion and anxiety after being diagnosed, and having to come to terms with the fact that the information about your diagnosis is provisional to begin with, and that the treatment plan may change as you undergo different tests, and more information is revealed.

I hope there's one thing I can reassure you about - what chemo does to your skin. I have mild psoriasis, just a few red marks on my arms and legs, and while I was undergoing chemotherapy there was an unexpected bonus in that my skin cleared up completely - it was like a baby's! I'm not sure whether it was the chemo itself, or the high doses of steroids they give you in the first few days of each chemo cycle, but my skin became completely clear and soft. I sincerely hope the same thing happens to you xx

eeyore58
Member

Re: i cant get my head around it

Thank you Jan xx

Jaybro
Member

Re: i cant get my head around it

Hi

I’m so sorry you’ve been landed with this diagnosis at a time when you’re still grieving for your mother. I so needed my mother when I first got breast cancer (well, even now) but also was so grateful she had died a year earlier because I know how she would have worried.  I just wanted to add a comment about your actual diagnosis. Oncologists have their own language, simple words that sound terrifying - invasive, ductal, lobular… They actually make no difference to you but they do inform the treatment plan designed especially for you. 

At this stage, you maybe need to make an important decision. Some people want to be fully informed, receive copies of all reports and do their own research so they feel in control of their treatment. Others, myself included, prefer to leave it to the experts because they suspect they might get panicked by some detail. If you want to know more about what the various codes and labels mean, please don’t use Google. It cannot take emotions into consideration, nor consider your unique diagnosis. It’s pretty scary territory. Ask your breast care nurse, the nurses at the number above, but don’t ask Google.

But first, decide how much information you want and need to get through treatment. I too was terrified of chemotherapy because of my phobia for vomiting. I made sure everyone knew what my problems were, without embarrassment, and they bent over backwards to support me (2 lorazepam before chemo to make sure I didn't do a runner). Chemo might not affect your teeth, you just don’t know, but it’s likely to affect your gums so find a sympathetic dentist and, if you can, arrange to have treatment under sedation (I do every time) so you’re in a better position in case they want to add the 6-monthly zometa infusion (biphosphonates) to strengthen the bones. The dentist will fit you in if they know you’re about to start chemo. Alternatively, consult your oncologist and see what advice they give you. 

It’s a scary experience initially but you soon get into the swing of things and it is all manageable. It’s best if you have a circle of support in case you need lifts to treatment as well as a shoulder to lean on and an ear to listen. Meantime, maybe concentrate on your emotions. Instead of thinking the worst about things you don’t yet know (and believe me, if there were any risk of your bc being untreatable, you’d know just by the way they treat you!). There are NHS-approved apps like Headspace and Calm with loads of things to sooth you or even help you sleep. I use videos on YouTube by Progressive Hypnosis every day and they help me so much. Just don’t think you’re lumbered with all this terror - you’re not.

I wish you all the best with what lies ahead.

Jan x

eeyore58
Member

Re: i cant get my head around it

Thank you for your reply Charys, my anxiety is really bad at the moment, i know i wont cope with chemo at all, i know i have to have it which makes it worse, do you know if chemo would make a chronic skin condition worse? ive suffered with pruritus and chronic hives for over 10 years now, they ruled out certain things that could be causing it but no definite diagnosis, they put it down to stress, anxiety, low folate and ferritin levels on and off, its all really daunting, i'm hoping the oncologist will reassure me on monday about it, all this is a bloomin nightmare, do you know of anyone on the site who is like me with chronic itching skin and facing chemo? i know you are not a dr or anything just thought id ask x

Charys
Community Champion

Re: i cant get my head around it

Your question -

i was told that i am not going to die and that its is very treatable, i was wondering if they only said that because i was in shock and to reassure me

They aren't in the practice of giving false hope to people, they will be kindly realistic with you and honest. So, if this is what they said, then that is what they feel. I know that later on you mention that your prognosis might change depending on the results of a few things you are waiting on, but that they have said this is still treatable - modern medicine for BC and individualised treatment plans have made the majority of cases effectively treatable. So, you have every reason to be extremely hopeful that, after this difficult period of treatment, you have future to plan and living to do with the skilled medics having done their job for you.

 

 

Charys
Community Champion

Re: i cant get my head around it

Of course I'm not sorry I asked and please don't ever apologise for being 'in a mess' ! I'm so sorry to hear that you've not only had a diagnosis but are still waiting on a few bits and pieces before a finalised treatment plan. Its so understandable that this shock will take some time to process and you will still have many things that need clarifying and questions to ask. You know you can ring your BC nurse at any time to ask questions or for support e.g. chemo and your mouth - don't sit there with thoughts whirrling in your head, alone (or of course you can use the helpline number on here). Its so confusing when you are first diagnosed, it all feels so alien and frightening, I remember it all too well. There are of course lots of leaflets on here too, about anything and everything, in the main website section - some might be of use to you now, but others I guess will be more useful once you know your exact diagnosis and treatment.

 

 

eeyore58
Member

Re: i cant get my head around it

Hi Charys, you'll prob going to wish you never asked 😄  i have got Grade 3 invasive ductal ER+ HER2- one of my nodes is affected, on the day of results dr did a skin punch biopsy for IBC she seems to think that its not that tho, haven't had results for that yet, PET/CT is saying im clear of spread, she phoned and told me as she knew i was worried about it, got to have Chemo, every 3 to 4 weeks for 6 cycles, masectomy of the one breast after, rads a possibility, although she didn't say anything about it on results day, i still aint got my head round it really, panic stricken over chemo, still think im going to die, she did say i will either be cured or treated before the CT/SCAN results came through, don't even know if the result changes anything on that, i'm a bit worried about the IBC impending results too, if i have got it does the prognosis change for me?, its all double dutch to me.

i'm worried about the effects of chemo on my mouth, i had a really bad experience with a dentist a few years ago and it put me off going back, so my teeth aren't in brilliant shape, does that mean lots of problems with chemo and mouth infections? sorry i'm still a mess!.

Charys
Community Champion

Re: i cant get my head around it

Hiyer Eeyore,

I'm guessing that you have already been back for your 13th Jan appointment ? How did it go ?

 

eeyore58
Member

i cant get my head around it

Hi all, i'm really down at the moment, i haven't had the official results yet as i was verbally diagnosed on christmas eve after an ultra sound and core biopsy, had an breast MRI last weds and go to go back to the clinic on 13th jan for results, every morning i wake up, the c monster invades my head and i cant even grieve for my mum properly, i still think i'm going to die from it, i was told that i have 2 small lumps and that they are fairly certain its cancer i was told that i am not going to die and that its is very treatable, i was wondering if they only said that because  i was in shock and to reassure me, my question is would they have said this to me if they were unsure, i feel like they have given me false hope, has anyone ever had a verbal diagnosis without seeing the official results that turned out not to be cancerous? all this is so stressful and scary, i know i'm not the only one that is going through this nightmare but i feel so alone as i dont know anyone who has gone through this on a personal level, so finding it hard to cope ...im so sorry for such a negative post  ....i hope that everyone is doing well xx