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Now have my treatment plan

12 REPLIES 12
Freda61
Member

Re: Now have my treatment plan

Hi H

Good to hear you are dancing.  I'm too sore and had to sit on the sidelines with a bottle of wine. I've promised to make up for it next year.  I have finished rads and have moved on from the 'this might be my last Christmas' thoughts which I was having a couple of months ago.

 

Regarding tamoxifen, have a read of the hormone threads on the treatment section.  If it is hormones making your lump grow they will give it to you to block the oestrogen.  It can make a huge difference in reducing the risk of it coming back.  All the treatment we are having has its own risks. The oncologist will look a the risks and decide what is best for you.

 

After my biopsy they said I would probably  be given a hormone treatment.  After surgery, when they had more detail on the lump, I saw the oncologist and she said I needed to start Tamoxifen asap.  If the Tam doesn't stop my periods they will give me something else as well.  I did not take in all the details, but I have to let them know how things are going next month.

 

Re Radiotherapy, they talked about 3 weeks and it took me some time to understand they mean EVERY DAY, well weekdays anyway.  I had 15 sessions, but some people seem to have different numbers of sessions. The poor prostate cancer men have to have more than 30!  Again the radiotherapy threads on the treatment section has been a godsend in helping to fill in the gaps.

 

I hope you have a lovely Christmas too.

Mand
Member

Re: Now have my treatment plan

Hi H, good to hear you are doing okay.

It is certainly a long journey we are on. Everyone is different so you can only take advice and info and discuss your case with your oncologist and BC nurse.

For me, I also have the mirena coil and started taking HRT about 18 months ago.

I have my CT scan and planning for my radiotherapy on NYE - what a date! I can't believe I am finishing this year planning for my radiotherapy in the NY. I think most ladies have 15 sessions of radiotherapy and some have a booster straight after. I am having the 15 sessions and 8 booster sessions. They are two different types of radiotherapy as I understand it. I have started a thread for January New Gems having radiotherapy in the NY so you are welcome to follow our part of the journey on there and perhaps ask any questions I can't answer at the mo.

Tamoxifen - yes it seems most of us are on tamoxifen and start this at the same time as starting the radiotherapy. I will start mine soon and I am a bit weary about it but if it is all part of the preventative measures that I have to take then I am going to try everything. Try not to frighten yourself with too much at this stage. You've only just had the lumpectomy and you need to allow yourself to recover. I'm still recovering from my surgery 4 weeks on as I have had seromas form and have been in constant pain.

I am pleased to hear you are upbeat though as this really helps your recovery. I too can't wait for Christmas and yes I do too have thoughts - is this going to be my last one with the boys lol. I do know it is not but our minds do wander some times lol.

Wishing you a lovely Christmas and try to switch off from BC as much as you can and enjoy what you have. I certainly am going to do my best to.

Lots of love Mands xxx
HFK1234
Member

Re: Now have my treatment plan

Hello again everyone!


I wasn't sure whether to start a new threat or not - it's been a while since I last posted.  However, i feel that it's still relevant to use "Now have my treatment plan" as my subject.

 

I don't know about you, but I feel as if I have come such a long way in such a short space of time!  Just firstly coming to terms with the diagnosis - at first I was in complete shock and had to take sleeping pills.  Now I can finally sleep without them (had to ween myself off them, but got there in the end).

 

Now I am just going to try and have a lovely Christmas, in fact, not try, I will have a lovely Christmas.  I'm really looking forward to it - more so that usual!

 

There have been lots of parties lately, and I am dancing as if my life depends on it - literally!

 

Morbidly, I keep thinking " this may be my last dance/Christmas/New Year etc etc" - can't help those thoughts, they just appear from no where!  However, my thoughts are a lot clearer than they were - so lots of improvement there too.

 

My reason for posting was to ask a question  - those of you that perhaps have more info than me, or are further down the line.

 

I'm due to have a lumpectomy on 7th Jan, then some radiotherapy.  I have no idea how much radiotherapy - the oncologist said 5, but not sure whether he meant 5 sessions or 5 weeks.  He has a very strong Greek accent, so I really have to concentrate on what he is saying.  

 

My friend, who has just had a mastectomy and reconstruction is taking tamoxifen - whilst at a party, she was telling me about her hot flushes, then said "you will have to take it too".

 

Will I???  The oncologist didn't mention it - or do they just tell you things as you go along?  I really am reluctant to take it, but will if I have to.  Does everyone have to take it?

 

However - I have read other posts about there being links to the mirena coil and bc - and hey, guess what - I had mine fitted September 2012, then in October 2013 was diagnosed (noticed the lump prior to October, but took me a while to get diagnosed - don't ask!)

 

So today, I had it removed.  I had strong suspisions before reading the posts that it could have been a contributing factor, but reading this just added to them.  I'm obviously not 100% sure that it's that, but with no family history of bc and being pre-menopausal, it does make me wonder.

 

This makes me wonder whether, if I am offered Tamoxifen, I should try to go without it????  Perhaps try life without the coil and see whether it makes a difference!

I have read other posts that Tamoxifen carries a risk of contributing to cancer of the womb??  I have to ask whether I would rather have a recurrence of BC or to have womb cancer???  

 

Any advice from those of you who are further down the line would be gratefully received, as always.

 

Wishing you all a lovely Christmas

 

H x

 

 

 

 

HFK1234
Member

Re: Now have my treatment plan

Hi ladies. So sorry I haven't yet replied to your messages. Ive been so busy at work then when I get home it's just as mad. Which is a good thing for me as it stops me from dwelling on my situation.

Everything is as normal at home. No feeling sorry for mummy or offering to help which I am quite pleased about in a funny way.

Did you tell your children's schools? If so did you use the template they have on the macmillan site?

H x
Katiecjm
Member

Re: Now have my treatment plan

Thank you Jo, I will look at the links provided. Katiecjm
ChristineP
Member

Re: Now have my treatment plan

Hi H, good to hear you have a plan now 🙂

When I was first diagnosed I had to tell my children the same day - as I had to start chemo within 10 days, and we had to rearrange family plans, and I had been in and out of hospital for weeks, so the kids knew something was up. It was really tough telling the kids! But it did help us all to stay as open as possible about what was happening.

My son was ten at the time. It appeared he did not want to talk about the cancer and treatment much. It took me quite a while to understand his feelings - then it suddenly became clear to me - it was the fact that this was 'breast' cancer, which he found hard to deal with, had it been 'leg' cancer', or cancer of any other thing and not about 'breasts' then he would have been easier about it (being a ten year old boy). Once I understood this and we talked about that issue, it became easier to talk about the subject. I wonder if other mums of boys of similar age have had a similar experience...
Christine

Jo_BCC
Member

Re: Now have my treatment plan

Hi Katiecjm

 

Welcome to the Breast Cancer Care discussion forums, you've come to the right place for some good, honest support from the many informed users of this site.


I have put for you below links to some of BCC's publications you might find helpful. Also our helpline team are just a free phone call away, 0808 800 6000 lines open Mon-Fri 9-5 and Sat 10-2

 

http://www2.breastcancercare.org.uk/publications/diagnosed-breast-cancer/breast-cancer-your-child-s-...

 

http://www2.breastcancercare.org.uk/publications/diagnosed-breast-cancer/breast-cancer-you-diagnosis...

 

http://www2.breastcancercare.org.uk/publications/diagnosed-breast-cancer/resource-pack-primary-early...

 

Take care,

Jo, Moderator

Katiecjm
Member

Re: Now have my treatment plan

H,
I am in a very similar situation to you. I was diagnosed on 15th November with the same type of breast cancer as you, I had a lumpectomy and sentinel node biopsy on 2nd December and am going back to the hospital tomorrow for my treatment plan.

I had to go back to the hospital last week due to a wound weeping slightly and they had just got my results back and thankfully they got a clear margin around the tumour and my lymph nodes came back clear. The MDT meeting was today and tomorrow I will find out exactly what treatment I will have and hopefully dates. Initially I was told I would need radiotherapy although now it has been suggested that I have chemotherapy and then radiotherapy due to my age.

I am 40 and have 3 children aged 16, 11 and 8 (although my daughter was only 7 when I was diagnosed), telling my children was the hardest thing I've ever done but they have been brilliant and I am a firm believer in being honest with them. My main concern is what effect all the treatments they see me going through will have on them.

I am beginning to feel more positive about things now and I know that there are a few rough months to get through but the thought of not being here for my children scares me so much more than any treatment, so I will get through this.

Try to stay positive.

K x
Mand
Member

Re: Now have my treatment plan

I'm so pleased my message helped you to tell your boys and you saw it before doing so. Boys will be boys and remember they are growing little men and it is very true that most men bury their heads in the sand and pretend its not happening.

Try not to hide too much from them. They will feel alienated and angry that you're not sharing. It is difficult with the different ages. Your eldest will be more inquisitive to know what's happening.

Perhaps be prepared for their feelings to come out in different ways but honestly they will amaze you. They just want their Christmas dinner too!!!

Also, perhaps try to have a little more one to ones with them. Cuddles when they can perhaps ask little questions.

I promise you that they will be fine and you now have to concentrate on yourself and make sure you get the support you need to get through this.

If you have any questions that you think I may be able to help with then please let me know.

Wishing you calm and peace whilst we go on this journey sweetie.

Mands xxx
HFK1234
Member

Re: Now have my treatment plan

Hi Mands

 

Thank you for your reply, I saw it just before so it reassured me I was doing the right thing.  I loved it when you said they would worry about whether you'd be there to cook their Christmas dinner!  Up until and even during I had my doubts about tellling them.  Also it was difficult as they are all such different ages, but I felt it best to tell them all together.  I've never called them all together like that to speak to them, so they knew something was up.

 

My 7 year old went off, but I think more to do with not wanting to sit in one place for a length of time, it's just not what he does!  But I think there was also an element of him not liking what he was hearing.  I tried to be as child friendly with my language as I could.   

 

My eldest completely understood straight away and just wanted reassurance that it had been caught early and once I'd had my treatment, it would be over.  My middle one was just embarrased about being gathered together, I don't think he fully understands, but it's so difficult to tell.

 

Anyway, they know now, so no more hushed phone calls.  We've made some plans for the Christmas hols for us to do some nice things together.

 

The two younger ones are back to fighting, so normality resumes!  

 

Thanks again for your reply.

 

H x

Mand
Member

Re: Now have my treatment plan

Hi H, it is very true - once you know what is going to happen you can start to prepare. It is the waiting and not knowing that is perhaps the hardest part of our journeys.

Re your boys - mine are a little older - 20 and 23 and it was the hardest thing I had to do when I told them. Don't be surprised at how they deal with the news. Initially, it was lots of tears and having to deal with their darkest fears - will I be around to cook their Christmas dinner lol. Your boys will deal with it in their own way and you won't stop worrying about them worrying about you. I have tried to show them how positive I am and to assure them that it is all treatable. They don't very often see me upset but when they do I think it is good for them as they can give you comfort and support. I decided to give them as much information as I could to help them. I offered that they could come to pre op asssssment with me so that they could perhaps ask their questions with a professional. Up until the morning they were coming with me but didn't get out of bed !!!! Typical boys I have to say. Whilst I have been to all of my appointments on my own I have updated them at every stage. I don't think they really want to hear what the next stage is but I think it is important to keep them informed. Another thing I did was to make sure their closest friends knew about me so that they could keep an eye on my boys for me and be their for them if they needed some support. I know that this has affected both my boys enormously and they don't want to share how they feel with me. I've heard them both cry in their bedrooms. It is very hard to deal with loved ones going through this with them but they will cope and they will do amazing little things to show how much they love and care about you. Having said that the cream carpet in the lounge wasn't hoovered for 3 weeks until I could manage it myself lol. They were also amazed that the fairies didn't come one week to empty their rugby kit bags of dirty wet kit.

I just wanted to offer you some support in having to tell your boys. I am sure they will amaze you sweetie. Hope all goes well.

Mands xxx
Sam_BCC
Member

Re: Now have my treatment plan

Hi HFK1234

 

It sounds like you're relieived that you have finily received your treatment plan.  I'm not sure if you're aware but BCC have a resources pack which is specifically designed for those diagnosed and contains information to help you better understand your diagnosis, test results and the various treatments available. If you would like to order a copy just follow the link bellow:-
 
http://www2.breastcancercare.org.uk/publications/diagnosed-breast-cancer/resource-pack-primary-early...

 

Also do give the helpline a call if you need any further information or support.  They are on 0808 800 6000 and the lines are open Saturday 10 to 2pm and Monday to Friday 9 to 5pm.

 

Best wishes Sam, BCC Facilitator

 

 

HFK1234
Member

Now have my treatment plan

I finally have my treatment plan!  I got a call on Tuedady evening asking me to go in on Wednesday morning.  They had just had their multidisciplinary meeting and had agreed on a plan!  

 

I've posted on here a couple of times, but to brief you on my journey so far - I'm 43, with 3 boys - 16,14 and 7.  Diagnosed on 13th November with Invasive Ductal carcinoma,  They didn't know what to do with me as it was presenting in an unusual way, just under the skin, but on the nipple area.

 

Therefore there was along wait between my last consultation and getting my treatment plan - not great.  In fact, I almost started to think it had all been a nightmare and it hadn't happened.

 

Now I'm back to reality.  We've all agreed that I will go in on 7th January to have a lumpectomy then radiation to follow.  At first I was a little disapointed because when I was first diagnosed, the consultant siad it would be better to have mastectomy than lumpectomy due to my small size.  So I did feel like he was back tracking slightly.  However he justified it by saying it is better to work with my real breast first of all, then if they find that there is more or my node is infected, we would look at plan b.  He also reassured me by saying I could perhaps have a nipple added a year down the line if I wanted.

 

For all of you who said that the wait is the worse and I would feel better once I had my plan, you were so right.  I do feel so much better.  I'm sleeping again (without sleeping tabs) and just feel much more positive.

 

Don't get me wrong, I'm still scared, but most of my fear is about it returning and not the up and coming surgery.  I don't care about my breast being smaller etc etc.  I've even got my head around radiotherapy (the idea of radiotherapy before my diagnosis was the most scary thing on earth).  What I can't stop is my mind jumping ahead a year, 2 years, 5 years, 10 years to the possibility of it coming back.  I guess this is normal??

 

I am now planning to tell the kids tomorrow - I've said all along that once I had my plan, I will tell the kids. I'm absolutely dreading it.  I have no idea how it's going to go.  I have to do it now though asI really don't want them finding out another way.

 

I want to add to this how helpful this forum has been, all of you have given me so much strength - those who have replied to my threads and those who have started their own.  I've learnt so much from you all, so thank you!

 

Anyway, I have a habit of writing long threads, so I will stop there.

 

H x