I've been lucky, but just have uncertainty

Hi Dor

Welcome to the forum although, obviously you'd rather not have had the need to be here.  

First thing, don't feel a fraud!  If you had broken your arm and it was a clean break, rather than a fracture which the person next to you had, would you feel like a fraud for having had a clean break?  

I had an invasive tumour and also DCIS.  It's very good news that you had DCIS, rather than an invasive tumour, as it's not life threatening, but it could have turned into an invasive tumour, so as you say, it's great that it has been found and treated so quickly.  You have been through all the worry, uncertainty, the operation etc that is just the same for an invasive tumour, so don't underplay what you have been through because it was DCIS.  In fact, although I had radiotherapy and oestrogen blockers (I was fine on mine), I was diagnosed 5 years ago, so I didn't have to go through COVID, so I think I got of lightly!!  But I certainly wouldn't say I'm a fraud just because I didn't have to endure the COVID years.

I'm sorry that you've been told to stop your HRT and the fear that comes along with that.  Huge fingers crossed that it doesn't have too much of an impact on you and great that they don't feel the need for oestrogen blockers which would make lack of oestrogen symptoms worse.

Here's a paper from Dr Peter Harvey which I think you will find sums up exactly what you and many ladies feel after breast cancer. I think you'll identify with what's written here.

In summary, yes, 100% what you are feeling is perfectly normal.

Best Wishes, Lesley

Hello and welcome.  Another DCIS person here, albeit from 7 years ago.  I just wondered why no radiotherapy, were you low grade?  I had high grade so had radiotherapy too but I know for low and intermediate there is a decision to be made.  

Don't feel a fraud, they didn't treat you for fun xxx

Thank you so much Lesley.  A lot of things coming to mind now that the whirlwind has passed and time to take stock.

Hi, Carol

I don't know why tbh.  Telephone call with my surgeon two weeks ago, I was just told oncology didn't feel it would be of benefit.  

I seem to recall seeing in one of the letters to my GP that it was intermediate.

I actually feel like I need a bit of a debrief.  I didn't read up on anything too much when I received the diagnosis as I thought it would worry me more, but wondering if there are more things I should have asked.  I guess they don't want to offer too much info as it's clearly a lot to take in.

Lots of questions now though, one being if medical questionnaire or an insurance form, have I had breast cancer?  Is it normal to worry if I'm now more susceptible and will have something again?

Hi Dor,

I had IDC as well as DCIS, so I'm not exactly in your position but I thought I'd chip in.

IMO yes you have had cancer, albeit non-invasive. That's my understanding of DCIS.

If in any doubt, could you ring your breast care nurse? They should be able to clarify for you and hopefully also provide that debrief that you need. I completely get the feeling that you need to talk to someone and understand what just happened. It's all a complete whirlwind. It's totally fine to just keep ringing them and asking your questions until you get the understanding that you need.

I had a few more treatments than you but in a way that was an advantage, because it gave me more time to process everything and more chances to ask questions of my oncologist and nurses.

My understanding is that, having had breast cancer and a bunch of treatments, I am now not particularly any more susceptible to having breast cancer in future. My oncologist told me that in future I have about a 1 in 7 chance of having it, which is the same for the female population.

The Macmillan support phone line is also great for general info and support - I phoned them a few times and that helped a lot to normalise the things I was dealing with. Another service I found really helpful was Breast Cancer Now's Someone Like Me.

Re. HRT: again I'm not in your position but thought I'd mention that some of the effects of menopause can be mitigated by medications or practices that are completely safe for people with hormone receptive breast cancer. E.g., venlafaxine can help massively with hot flushes, some people find that acupuncture, CBD oil, magnesium, diet changes etc help a lot with flushes and anxiety too. So just to emphasise that there are options.

I think the impact of the fast-paced whirlwind of early cancer treatment is under-rated and we go through so much in those first few weeks. You are in no way a fraud and please don't downplay what you've been through. Yes - breast cancer is pretty common, yes there are lots of people out there who have to go through it, but NO that doesn't make it any less impactful on an individual level.

Your worries and questions ARE completely normal. All the best with everything.

Yes you've had BC.  I was rung by my GP after they had letter from hospital informing them of my diagnosis and it was as she said policy to do welfare call to patients diagnosed with cancer and offer support eg sick note .

re radiotherapy.  I'd speak to BC nurse about final diagnosis after surgery.  Be aware you can only have radiotherapy once to a breast so if in future you have a new breast cancer you can't have it again . 

Thank you.  I certainly didn't know you can only have radiotherapy to a breast once.  

I think it'll be worth me having a call with the BC Nurse to run through some things.  Just feel happier doing it now with these responses knowing this is normal and I'm not just being a pain.  Thank you.

Thank you for replying.  This is just what I was after, just knowing my feelings and questions are normal is such a relief in itself.   And, I really do appreciate the reassurances that I'm not a fraud, thank you.

Hi I am going through the DCIS journey.  I have my lumpectomy (mammoplasty) just over four weeks ago and getting the results on Thursday.  I feel the same as you tbh. I have asked my BC nurse if I will be needing radiotherapy (Ive had high grade and intermediate) and she said that's its on the table but they are waiting for the results.  I am a bit up in the air atm, not sure what is going to happen in the coming weeks and months.  It has been quite a whirlwind for me to and Im not really sure how Im supposed to be feeling. I can't feel too positive because I haven't had pathology results yet but hopefully they have removed the DCIS successfully.  Feel a bit in limbo! Hopefully I will know what's going on more after Thursday.  What Im trying to say is that I think its normal to feel like this for a while and then hopefully things should start to improve.  Good luck!

Hi Gertie

So sorry for the late response, I've been away.  Thank you for your response, how did you get on with your results Last week?  I hope they got everything and no further surgery needed.  Have you had the response about radiotherapy or is that a further wait?  The limbo time is weird isn't it, you feel a bit lost, trying to get on but with the worry.