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Diagnosed this week

22 REPLIES 22
CrystalTips
Member

Re: Diagnosed this week

Thanks all, I've been doing a lot of obsessive reading about DCIS so I now feel like I have a bit more of a grip on what it is and that it's not life threatening in itself and after treatment I will more than likely be fine (my DCIS is apparently so small they were astounded that it had been seen).

 

I've decided to give BUPA a try.  I'm very lucky because there is a great private hospital near me, which not only has surgical facilities but also the latest in radiotherapy available.  It's about the same distance as the NHS hospital only I will actually be able to park there and won't have to park on a side street nearby and walk 20 minutes to get to my appointment.

 

My only issue with the NHS hospital is that I lost my Mum at that same hospital in May, and although I wouldn't be in the same ward or anything I did spend an entire week there sitting with her while she slowly deteriorated.  So if possible I would prefer to go somewhere else (I realise that it makes me sound like a wimp btw).

 

I'm just bracing myself for the treatment now.  I know it's no where near as bad as some people have to go through but it still feels a bit daunting nonetheless.

 

 

 

 

Jobey68
Member

Re: Diagnosed this week

Hi Crystal Tips, As Charys says Radiotheraphy is fine and a world away from Chemotheraphy, I worked through mine and although my husband or niece came with me each day for company I was quite capable of driving myself and did most days, it's totally painless and i felt absolutely fine throughout , you can get quite tired and your skin can get a bit sore but it's generally minor stuff, you don't actually feel ill as such,  I'm sure you will be just fine! I also had private Heath care but stuck with the NHS as it was quicker believe it or not, plus I would have had to attend the same Radiotheraphy dept in my local hospital anyway so really didn't seem much point, bare in mind you can claim through BUPA if you don't use it for your appointments, op, and treatments , I had almost £3000!!    xx Jo 

Charys
Community Champion

Re: Diagnosed this week

HI Crystaltips,

 

To reassure you. I had RT, including boosters, which ended in June. I drove myself to my appointments each and every day and attended alone. I am married, but never felt the need to have anybody else help either physically or emotionally. I did feel tired towards the end, but it wasn't even necessary to sleep during the day ...some do need to do that however, everyone reacts slightly differently. I will say though, having read about differnt reactions and talked to various people, despite the skin reactions and tiredness nobody felt it was that bad. I don't think you should worry too much about being alone or it being that bad. Your BCN is right I just had a sunburn look and tiredness. In advance I would suggest making sure you have prepared meals, or some ready meals to save yourself extra effort. Be prepared to take things easy and allow yourself lots of rest and I think you'll be ok. 

 

Regarding the BUPA issue....I was in a very similar position to you. I had private BUPA cover, and for my first few consultations and tests I used the cover. I then swapped back to the NHS for all ongoing treatment, I found the private sector didn't work well for me. It felt quite lonely as you weren't there chatting with other people but sat alone in a lovely room with nice coffee lol also, there didn't seem to be the same processes for support and anyway it Made no difference in terms of speed of treatment. Treatment was done by the same people, in the same places but 'privately' and with a few little sweeteners thrown in ....like better biscuits. I have a really good tip for you here.......if you transfer back to the NHS BUPA reward you with a cash payment for each medical appointment, procedure and treatment you undertake. BUPA pay a huge amount to th NHS for treatments and giving you a bit of cash is much cheaper. You have to keep some official documentation to sent to them, including things like your surgery discharge letter and your official radiotherapy timetable. I had for example, 100£ for each radiotherapy session. We had lost our holiday deposit, so this helped us cover those costs. X

Kiki2
Member

Re: Diagnosed this week

Sorry to hear of your diagnosis. I can't help regarding the radiotherapy as I didn't have it but at the time I did have private healthcare insurance but decided not to use it as everything moved very swiftly anyway with the nhs and the surgeon I had was the same one who would have done a private op. I wasn't sure what the aftercare would be like if I went private. In my case it's a good job I stuck to nhs as my husband has now changed job and we no longer have the cover! Good luck Nic xx

CrystalTips
Member

Re: Diagnosed this week

Hi I was diagnosed with DCIS yesterday so am still in the slightly shocked stage.  Like most people it was described as precancerous although from all the reading I've been doing it would seem that it's actually a very early form of breast cancer that at the moment doesn't have the ability to spread but could potentially develop that ability in the future.

 

I've been booked in for surgery (a lumpectomy) in 5 weeks and they are saying that a 3 week course of radiotherapy will probably follow once they've looked at the results of the surgery. 

 

 I'm really worried about the whole thing, I live on my own and although my sisters are generally being great (although one has forbidden me from saying it's cancer because in her opinion precancer and cancer aren't the same thing), and they will obviously support me through the surgery, I'm not sure how I will cope with the radiotherapy afterwards.

 

The breast nurse seemed to be saying it was nothing and that I'd be able to drive myself to the appointments and the worst I would be is a bit tired and might develop someting like sunburn in the area they're treating.  But is that really true, is this something I'm going to be able to handle on my own.

 

I'm also in a dilemma about whether to go private for the treatment or not.  I'm very lucky and have BUPA health cover with my job but have never used them before so am really not sure if they would be quicker/better in any way. Does anyone have any experience of private care for something like this?

 

I realise I'm rambling a bit but my brain is spinning at the moment.

 

 

Kiki2
Member

Re: Diagnosed this week

Hi, I had DCIS diagnosed Jan 2015 and had 2 patches too far apart so had mastectomy. I must admit I was relieved that the choice between mastectomy/lumpectomy was taken away as I couldn't decide what I would choose if given the choice! After mx they said there was a tiny 3mm invasive tumour so I was glad I'd had mx. I had immediate recon at the same time which has worked out well. My node biopsy was clear so I didn't need chemo or rads but I am on tamoxifen for 5 years. Good luck with your decision! Nic xx

noon
Member

Re: Diagnosed this week

Hi Eli. I was 48 when I was diagnosed with DCIS and had a mastectomy as it was in four areas spread about, with no other treatment. U are not alone in feeling the way u do and how to explain DCIS. People don't really want the big explanations they just want to support u. It is an early form of bc which is contained within the ducts and u have absolutely every right to feel anxious and want support. It's an awful time for u with all the waiting and wondering. Do not feel in anyway that u don't deserve to have the support u need. I think once u know what u r going to be doing with treatment u will be able to focus a bit better. U r feeling the same and have the worries as everyone one else on here and even now I still get anxious and can't believe it actually happened to me. You really are not alone in how u r feeling xx
Charys
Community Champion

Re: Diagnosed this week

Great! I told you so. GOOD modern medicine is about partnerships of patient and doctor, and shouldn't be about accepting without asking questions. I am pleased that you made the call and will now have a chance to discuss. Well done. 

EliB
Member

Re: Diagnosed this week

I phoned and spoke to my BCN today. She was lovely and I actually feel quite elated that my fears and concerns weren't dismissed. She said my Consultant isn't back till Monday anyway, so I've to think more over the weekend and then let her know next week if I want another meeting with the Consultant to discuss fully the pros/cons of me having a mastectomy. I feel at least I'm standing up for my own feelings - does that sound daft?

Caroluna
Member

Re: Diagnosed this week

Hiya folks

I'm another DCISette, my wise surgeon said the women who ask all the questions they need to and take the time they can to decide what is right, tend to recover well, so ask all the questions you need to. 

It really does get easier once you get going with treatment, and it does get sorted.

Hope all goes well for you, Caroluna

Charys
Community Champion

Re: Diagnosed this week

You know what......that awe of the medics was a problem I had in the first few months. They had an almost God-like status , and I would become a shaking mess when talking to them and not ask what I wanted or remember things they said. I was like a wimpy 'yes' person in the first few consolations. Part of it is that fear and anxiety take hold and you just want someone skilled to take away the cancer, but you need to be sure and confident that you are making the right choices. You don't want regrets and 'what if s' so now is the time to deal with queries, before committement to things. They are just people too, and you can be more assertive with your interactions as it has to be a partnership through treatment, not just 'I tell you what I'm doing to you and you accept it'. You aren't wasting anyone's time and the BC nurses particularly are there specifically to guided you through the maze. They will have heard this type of query many many times before I'm sure, and be used to dealing with it. 

 

X

EliB
Member

Re: Diagnosed this week

Thank you Charys! Think I'm concerned they'll think I'm overreacting or wasting their time, given they (Consultant and breast care nurse) both described DCIS as "pre-cancerous"(!) I now understand fully that it isn't. I'll try phoning my BCN tomorrow. Before I read the leaflet I hadn't even realised it was a question I had any right to ask.

Ih - Hi! It's a hellish time isn't it? I keep thinking it could be worse, but as much as I know that, it doesn't change how I'm feeling. Although it also feels surreal right now too.
This forum and the helpline are amazing though - keep reaching out!
Charys
Community Champion

Re: Diagnosed this week

Hiyer Eli and Ih,

 

Eli, it is certainly something to discuss in detail to make sure that you are absolute certain about which treatment is right for you. It is your body and they are your life choices, so don't feel that you can't ask questions which are about your holistic wellbeing. I find that a few medical professionals lose sight of the 'whole person' and get so set on dealing with the cancer that psychological aspects are forgotten. Nobody can say if it will reduce anxiety for you, or not, as everyone is so different in their needs and individual coping strategies. The point is though, it is clearly something that you need to discuss, and a good surgeon would be happy to do so and explain pros and cons. If you've been assigned a breast cancer nurse, they are a good place to start the discussion.

 

Ih, your feelings of devastation will end, trust me. Time is a great healer for most things, and as you work through the process of grief, anger, acceptance and moving forward with your life during and after treatment , you will start to improve. 

 

Take courage ladies X

lh1357
Member

Re: Diagnosed this week

I'm feeling the same way...it just doesn't seem real...everything seems to be moving in slow motion...I'm devastated...

EliB
Member

Re: Diagnosed this week

After being sent leaflets on DCIS by the nurse in the BCC helpline, I read this line "If a mastectomy is not recommended but you would prefer to have one, you can discuss this with your surgeon."
(I'm due a WLE in 5 weeks) and although I don't yet know the grading of the DCIS, I've already been having anxieties around "what if it recurs?" (I also have PTSD and anxiety as it is - could ready with something less to be anxious about!). Could mastectomy ( if they'd do it...) alleviate that fear? I'm honestly not asking this question lightly.
EliB
Member

Re: Diagnosed this week

Thank you so much, all of you. Yes, I'm trying now to focus on getting my own head around this diagnosis, worrying less (or trying to!) about what others need to know. I was warned by the wonderful nurse I spoke to on the helpline here, that if I downplay it too much to family/friends they might not understand that this is something that I need support with. Had my pre op assessment yesterday, which felt like another step towards getting this sorted.
Is it really normal to feel stunned by this? It's only 5 days since I found out, and feel like it's all I can think about.
Thank you all again! Eli
lizred
Member

Re: Diagnosed this week

Agreed, I have told people I have breast cancer as that is what I have been told it was - I have described it as contained within the ducts so it hasn't had chance to spread outside the breast (thankfully) but it is still cancer and treatment includes surgery and radiotherapy. Just to reinforce what other people have said here, try not to worry too much about what others will think / say and focus on what you need. Its still early days from diagnosis - I know I was in shock for the first week or so before I started to get my head around what was going on and things became clearer with further test results and a treatment plan. Hope things settle a bit for you soon xx

swampy1901
Member

Re: Diagnosed this week

Hi EliB

Whatever anyone says it is cancer - a fact that was bought home to me very solidly when my BCN filled in the forms for free prescriptions. She ticked the box for cancer/cancer related treatment and I thought who is she talking about - me?

Early cancer or not - it is still cancer - don't feel you have to explain yourself to anyone. It's been caught early and it is very treatable - hold onto that fact. x

Charys
Community Champion

Re: Diagnosed this week

What Jobey said vvvvv.  Lol

 

Seriously, her words sounded pretty perfect to me. 

 

Be be easy on yourself, don't stress too much about what others think of what you say or do, it's ok to feel how you feel right now. Your fear won't be any less than anybody else, you will have the same 'what ifs' and problems to think about.  x

 

 

Jobey68
Member

Re: Diagnosed this week

Hiya, Don't worry about having to explain yourself to others, you have enough going out without fretting about other people! It's a time to be a bit selfish now and do what's right for you, if you feel the need to tell anyone in any detail then I would keep it simple, you have been diagnosed with an early form of BC, it's totally treatable but it's still a stressful time and you would appreciate people's support and understanding Xx Jo 

EliB
Member

Re: Diagnosed this week

Thanks Jobey68. I think I'm also concerned with what to tell people. I'm struggling to understand "DCIS" myself, so other than my immediate family I don't have the energy to be trying to explain things (I have some other health issues too) So what do I say? I don't know if I should be describing it as "breast cancer" but adding that it's "contained" and "early", or is that overstating it? I just don't know what I should tell people, without big explanations.
Any advice on this would be extremely helpful. Thanks!
Jobey68
Member

Re: Diagnosed this week

Hi Eli, I'm sorry you have had to join us here but welcome all the same! 

Ladies often feel the same as you when diagnosed with DCIS , like it's not real cancer and they have no right to be so upset but it is cancer and you have every right to be!! I had some DCIS and a tiny 4mm area of invasive, minor compared to most but equally terrifying and I still had to go through an operation, Radiotheraphy and am now on Tamoxifen so by no means simple, my mum also died of breast cancer so that added to my fears although there was no genetic link between our cancers, both oestrogen fulled which is one of the more common types so just caused by sheer bad luck but it doesn't stop the fear of thinking you are going down the same path! Keep in touch with us as there will be plenty of help and support available here Xx 

EliB
Member

Diagnosed this week

Hi, I'm 44 and I was diagnosed 2 days ago with DCIS but have been told they can't determine the grade until I have the lumpectomy in 5 weeks. Then they'll need to test it more to determine whether I need radiotherapy or not.
The consultant described DCIS as pre-cancerous, which confused me as it contradicted everything I was reading, but the helpline on here helped immensely with that.
I think I feel a bit of a fraud though as I have a cousin who's currently going through chemo for breast cancer so this doesn't feel like 'real cancer' as people understand it.
I feel like I maybe shouldn't be as shocked and upset and yeah, even scared, by this diagnosis as I am - like I don't have that right. But I do feel all of those things!
My Mum died of breast cancer when I was a teenager and I think the association and memories of that isn't helping. Although I know it's also different.