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Confused

24 REPLIES 24
Pandabear
Member

Re: Confused

Thanks Delly and also for feedback on earlier post. 

I'm mostly ok, although fiddling with timings of Tamoxifen at the moment with my oncologist,  to help reduce side effects.  

Take care xx ❤️

delly
Member

Re: Confused

Yeh, good luck for your start on the 1st from me too. 

There will probably be a rads thread you can post on too.

Hope you're are doing well too, Pandabear, wherever you are up to with treatments.

Lots of love, Delly xxxxxx

Pandabear
Member

Re: Confused

Dear Callista, 

That is great that they have listened to you and are trying to meet your needs. 

Best wishes for 1st onwards.  Do let us know how it goes. 

Take care X 

Callista
Member

Re: Confused

Hi Dellypoos

Yes, my husband is allowed to stay with me.  I suffer from severe anxiety and agoraphobia so leaving the house is a big thing for me.  The hospital have been good with him staying with me.  We have had to fight all the way for it but I think they eventually understood.

Wendy xx

delly
Member

Re: Confused

Hi again Callista

So are you saying your hubby can "be with you" in the actual rads room, while they're setting up markers etc.?? If soo, that's really good. What A GREAT idea! Help quell your fears for the first one or so. Wishing you well then, for the 1st Feb start of rads, and throughout.❤️ How many will it be, Callista (love your name, by the way)??

Pandabear  -  Nearly called you a Polar one!! That was a really BRILL helpful and useful post of yours to Callista. Good stuff and on yer, girl. ❤️

Lots of love to you, ladies, and anyone else looking in, 

Dellypoos xxxxxx

 

Callista
Member

Re: Confused

Thank you all so much for your kind words.

It's so hard as you all know and understand.  I start treatment on Monday 1st.  I have to go for a covid test on Thursday and my husband is having one at the same time.  The hospital have agreed that he can be with me whilst they set things up and they said he would need a test as well.

Lots of love xxxx

 

Pandabear
Member

Re: Confused

Dear Callista/Wendy, 

Just to add to what all the other lovely ladies have said, this is a safe and supportive place for you to come. 

Anxiety about radiotherapy? Do tell them at your first appointment. The staff will understand, and will talk you through it.  

With regards to support - you should have a breast care nurse team that you can contact. I was given an open appointment, that if I am ever worried, I can just ring. But similarly, the number at the top of this forum. In addition, you will have contact with an oncology team, as you go forward with treatment to help prevent recurrence. 

With regards Tamoxifen (or any other treatment for that matter), if you don't understand something, go back to them and ask. It's so much to take in, it's no surprise it's so bewildering. Being confused just adds to what is already a stressful time. 

But in the meantime, don't hesitate to come on here to talk - we all get it, having been there ourselves - so can help support you on the journey. 

Take care X 

Evie-S
Community Champion

Re: Confused

Hi Wendy - I’ve just seen this thread and wanted to jump in and offer any help if you have questions about Tamoxifen, or radiotherapy. And also to back up what the other lovely ladies have said, that you should feel free to come on here and chat about anything, any questions, concerns, or just to rant. Big hugs, Evie xx

Callista
Member

Re: Confused

Hi Delly

Thank you for your support.  I had a phone call yesterday pm, I start on the 1st February.  I've got my covid test on the 28th January.

I started the tamoxifen yesterday, nobody has told me to but I was given a prescription at the ct scan and so I presumed I had to start it now.

It's probably just me but I assumed I would get more support than I have.  

Wendy xx

 

delly
Member

Re: Confused

Hi again Callista/Wendy

The Forum's a good place to get thoughts and feelings down, so don't ever think you're waffling and wasting anyone's time. (If you think YOU "waffle"? Should see some of MY loooong posts. Think I'm a bit reknowned for them! 😀). It's good for other people to know how you're feeling too. Let's them know THEY aren't alone in thinking/feeling the same things.

Yes - It WAS very lucky you found (by chance) what you did early on. If you hadn't been reminding yourself what you looked like up front, you may not have done.

I didn't need Radiotherapy, because I chose mastectomy and full node clearance (standard procedure back then with masts) over lumpectomy and rads. But that machine DOES look SCAREY.  From what many other women say on here ref. rads, once you've got the 1st one under your belt, it's okay, not sooo scarey any more. Again, it's that fear of the unknown, isn't it. Not knowing what to expect. It gets to everyone and is only natural. 

When do you start your rads, Wendy??

Lots of love,  Delly  xxxx

Callista
Member

Re: Confused

You don't know how much better I feel.  Even though I have a wonderful husband, he doesn't understand the thoughts going through my mind.  It has all happened so fast from finding the indentation to being diagnosed, the surgery and now I am here.  I feel as if it is only just starting to sink in.  I know I am very lucky. I found it early, there wasn't a lump so I wouldn't have found anything.  I had come out of the shower and for some reason I looked in the bathroom cabinet whilst I was drying under my arm.  I thought to myself, "Oh that's what they used to look like 🙂 " (I am 56) and I noticed the indentation.  I didn't think anything of it and didn't say anything for a week. It was then up to the hospital, scans, op and now I'm here. It took a lot for me to have the CT scan as I suffer with extreme anxiety and am claustrophobic and to be honest, even though I have seen it, I am very anxious about the radiotherapy machine.

 

Anyway, I have wasted far too much of people's time by waffling on.  Just want to say thank you again and I'm sure I will be staying around not that I know that I can.

Wendy xxxx

 

delly
Member

Re: Confused

Callista, sweetheart

Of COURSE it's okay to still be here. It's what this forum's all about.

Pleeease do NOT be afraid to contact your BCN or now oncology nurse, or any other of your team, if you're ever unsure of anything. Call her and ask what now happens about your Mammograms and any other info - it's what they are there for. It isn't unusual to miss info, sooo much to take in with it all, especially with video calls I would think. 

Use this forum for ANYthing ANYtime - it's invaluable. You have further to go with your preventative treatments - Radiotherapy, hormones. There are areas for such with loads of other women going through the same if you're ever struggling and want/need some help, advice, OR just to "connect" with someone going through the same to discuss your experiences. Just as there are areas for after it's over and "Moving On", so to speak.

My BC's (masts and full ANC) were 2006 and 2007 - I'm still here, as in I have survived. I joined the Forum 2014, initially prior to and whilst going through reconstruction, to get some info from other women. Sooo wished I'd known about it for my earlier experiences though, as it would have been a huge help instead of struggling through it on my own. But I still come back on to offer help and support to ANY other women going through it.

Doesn't matter how small your tumour is - a BC diagnosis is still a big thing, it's still a big trauma, SHOCK. Not one to be taken lightly by anyone.

Lots of love,  Delly  xxxx

bookish
Member

Re: Confused

You are absolutely okay to keep asking here! This is part of the hardest time, odd as that sounds. After my last diagnosis I did a course with the charity Maggie's, which was called "Where Now?". It recognised the sudden limbo feel that the medical staff were done with you, but nothing is at all back to normal. It can leave you feeling very lost and alone, but please don't feel that - the BCNs and everyone are there for you, still, if you need them, and this community always xx

Callista
Member

Re: Confused

Thank you all. You have confirmed all that I thought, I'd had a comment from a family member which made me feel that way.  I am relieved that the cancer is gone, it was larger than they originally thought so I'm glad it's gone.

I'm still wary about having the radiotherapy and taking the tamoxifen but looking at my husband's face when I have mentioned not having it is what is leaning me towards it. As you can see I am so confused 😞 

Is it still ok for me to come here now as this is the only place I am getting answers to my questions?  I have a nurse now which is for the oncology part but I'm assuming when I get discharged I lose access her her as well.  When I phoned the breast clinic and spoke to them they said I had to phone the oncology nurse.  

I haven't had a letter from the surgeon but do I presume that I have a mammogram every year now? I think I was told at the video call but to be honest, I didn't really take it all in.  I might phone and ask. I feel as if I am on my own with it all now and have no medical support other than my GP, who is fantastic.

Can you direct me to what else I can do to make sure it doesn't come back.

Thank you all so much

Wendy xxxx

Gelbel
Member

Re: Confused

Hi Wendy 

Welcome to the forum - sorry that you have to be here. You've found a wonderfully safe and supportive place.

As everyone else has said your lumpectomy has removed the cancer and the therapies, radio and hormone, are to stop it coming back. So you are not a fraud - try to celebrate that you are BC free and your specialists are doing what they need to, to keep it that way. 

I hope we are all clearing up your concerns. 

 

delly
Member

Re: Confused

Hi again Callista,

Yep, as Seabreeze and Melmacau say, the rads are to pick up anything that's too small to be picked up on scans etc, Tamoxifen to further prevent it. It's a Belt and Braces approach - ALL preventative  xxx

Melmacau
Member

Re: Confused

Sounds to me like since your lympectomy and now on Tamoxifen you no longer have breast cancer. The Tamoxifen is to stop your beat cancer coming back. Sounds like you had it but no longer since your treatment which is normal. I could be wrong but that's how I read it. 

 

I had the same. Lympectomy and I was given Anastrozol for 5 years to stop the cancer coming back. I also had 15 rounds of radiotherapy.

 

All the best x

delly
Member

Re: Confused

Hi Callista

Contact your Breast Care Nurse to have a chat about Tamoxifen, with any questions you have about it. Write them down before hand, so you don't forget anything.

Good luck with your healing and further treatments.

Delly xxxx

Seabreeze
Member

Re: Confused

Hi Callista,

I thought I recognised your name - I replied to one of your first posts and good to hear you've progressed on your treatment journey : )

Some good advice and comments from others below. You've had bc, they've removed the lump (I think you previously mentioned it was stage 1 which is bc, caught early), hence the perhaps slightly odd wording on the letter. Radiotherapy is given to zap any stray bc cells or other bc changes at the cellular level (too small to show up on an X-ray or ultrasound etc). While any treatment carries a few risks the benefits outweigh those and most women get on ok with radio, you might just find you get a bit fatigued for awhile and might have some skin sensitivity for awhile, but in the long run worth it for the reassurance of the zapping of any strays.  

Do come back with any other q's if it helps to settle your mind.

Seabreeze x

Kitkat23
Member

Re: Confused

Hi there.....it is a confusing time isn’t it.....the radiotherapy is to reduce the risk of a recurrence I would imagine, in your case.  I had non invasive very small cancer in 2012 .....was told I didn’t need radiotherapy and only had a 2 % chance of a recurrence in 10 years.....5 years later I had a recurrence ( exactly the same pp

lace...same type of cancer)..... of course I will never know if radiotherapy would have stopped the recurrence happening ......but if I was you....I would definately have the rads.   
take good care 

Jill1998
Community Champion

Re: Confused

Please go ahead with the radiotherapy - it reduces the chances of cancer re-occurring significantly ( around 30 % I think ? ) .Tamoxifen has different levels of benefit for each individual person - your oncologist can tell you what benefits you will get in terms of re-occurrence .I didn’t start my Tamoxifen until after radiotherapy -I took it at night but there is no specific time - if you have Hot flushes you may prefer them at night rather than during the  day .

Jill1998
Community Champion

Re: Confused

I must admit I found that a bit confusing myself - after my lumpectomy all my cancer had been removed so technically I didn’t have cancer anymore but I still had to have radiotherapy and Tamoxifen and was still dealing with the trauma of diagnosis .Most breast cancer treatment apart from surgery is in-fact to reduce the chances of re-occurrence and/or to clean up any stray cells that may be hiding although technically you are cancer free .

Jill x

 

Callista
Member

Re: Confused

Thank you for that sweetheart.  I don't know whether I should go ahead with the radiotherapy as if I don't have it anymore is there really a reason.  Is this the normal procedure for oncology or have I just been unlucky.

I really am confused.  I wasn't told when to start the Tamoxifen or what time of the day to take them.  The leaflet in the box doesn't really give much information just that it should be taken at the same time every day.

bookish
Member

Re: Confused

Hi Callista,

First off, please try not to get yourself in a knot. You ARE having treatment for breast cancer, it's horrible, no guilt should be there saying it to others.

The letter almost certainly means that the lumpectomy removed the tumour - which is fantastic! 

That doesn't lessen the importance of the rest of your treatment, not does it make you any kind of liar.

I hope you can breathe a little easier, and be kind to yourself xx

Callista
Member

Confused

I was diagnosed with breast cancer and had a lumpectomy before Christmas.  I have to have radiotherapy and then Tamoxifen for 5 years.

I have a telephone consultation with the oncologist, specialist nurse and dr who told me about the treatment I would have.  She said I would be contacted 6 weeks after the radiotherapy to see how I am and then discharged to my GP's care.

I am confused, as in a letter I recently received it said that I don't have breast cancer but that the treatment is to stop my breast cancer coming back.

Is this normal to be discharged and do I have breast cancer or not.  I feel a fraud telling people I am having treatment for breast cancer if in fact I am not.  I am totally confused because I was told by the surgeon that in 5 years I would be given the all clear.  

I am sorry if this is not in the right place, so please accept my apologies if it's not and feel free to move it.

Many thanks, Wendy xxx