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Hello and scared

23 REPLIES 23
Frances333
Member

Re: Hello and scared

Hi Jencat and thanks for asking. I am doing quite well and just the odd "wobbly" moment that doesn't seem to last too long. A few days ago I was in pieces but think now with all the reading, thinking and talking to a couple of close friends things have finally fallen into place and I'm quite calm. It's when I can't work it out or understand that I get stressed. 

I am not in denial but think as I am so calm It's like I'm forgetting what is happening. A few times yesterday and today I was thinking about things I need to do next week and then suddenly remember Wednesday is out due to surgery and possibly the following couple of days if tired as well. Then I say to myself how on earth can I forget breast cancer and surgery. Duh! Mind you I'd rather that than feeling so weepy and scared and can't think of anything else.

 

Have spent a mint of money in BCC online shop. I think everyone is getting something from there for Christmas 😂.

 

I hope all is good with you. xxx 

 

Jencat
Member

Re: Hello and scared

Sorry, forgot to ask how you are Frances xx

Jencat
Member

Re: Hello and scared

Oh that sounds lovely Frances to live near the centre of Canterbury. I love Whitstable too, it was a bit run down at one time, but now it seems the place to be!

I've got a close friend who fairly recently moved to Malvern and although i miss her living near me, it a very nice place to go and stay! I'm hoping I can go and escape up there for a while before too long! xx

Chaffinch17
Member

Re: Hello and scared

Thanks for that, I will look into it.
blueash
Community Champion

Re: Hello and scared

My chemo was on Friday morning and I had my last meal on Tuesday evening. I had only water or black tea/coffee until Saturday morning. What made me do it was the video showing mice, because the fed mouse was huddled up and it's fur was standing on end and it looked to be at death's door but the fasted mouse looked just fine.

 

With the mice they fasted them for 24-48 hours and then put them back in that cage with food right after the chemo. With us they think we need at least 48 hours due to our body weight being so much more.

 

Look at everything you can by Valter Longo. Taking the steroids was not a problem either even though it says on the box to take with food. I didn't and I was fine.

 

I am not new to fasting either.

Chaffinch17
Member

Re: Hello and scared

How long did you fast for and did you drink normally during the fast? I would have no problem fasting because I have done 5:2 and eat low carb so don't eat bulky carbs.
blueash
Community Champion

Re: Hello and scared

Frances I forgot to say that they will give you a heart echo scan and it has to be above 50% before they will give you Herceptin. Then you have an echo every 12 weeks and if the percentage drops by too much they take you off it. If it comes back up they start you on it again but if it stays low then you see a cardiologist and between the cardiologist and the oncologist they work out a plan. After all no point curing your cancer if your heart packs up!

 

 

Also I was able to find the original thread I was looking for, Bibi responded she did not start it which was why I could not find it earlier but here it is:

https://forum.breastcancercare.org.uk/t5/Hormone-therapy/Herceptin-affecting-heart-muscles/m-p/10334...

 

I was worried because they had to cut my chemo because my blood counts went too low. That is why I took the supplements and my heart  echos actually improved and I managed to have all 18. That said in some places like Finland and Australia they give you 3 and they say it is enough so don't panic.

 

If you do have chemo read about Valter Longo, I did a fast  before chemo and my side effects were very slight compared to some both on here and in my unit. My blood still went low but I had no sickness or tummy trouble, no cold sores, no thrush or mouth ulcers. It is not as bad as you fear it will be. Please ask if you want to know anything xxx

Frances333
Member

Re: Hello and scared

Canterbury is wonderful and my friend live on the main high street. Straight out of his front door and 10yards to nearest coffee shop. I am a Londoner and use to have family in Canterbury and Whitstable so know the area. Didn't move north until 12 years ago. Know Malvern as well. Thank you for all your support. xxx

Frances333
Member

Re: Hello and scared

Thank you blueash. I have read the links you sent and can't find any side effects or interactions with medication I'm all ready on. I will wait and see if I am offered chemo/herceptin and ask then if I can take Coq10 and pycnogenol to help with the heart just in case of blips with herceptin.

received more leaflets from the wonderful people at Breast Cancer Care and have been reading those. So much helpful information. Having you ladies to chat to as well is so reassuring. Thank you. xxx

Jencat
Member

Re: Hello and scared

Good that you've been able to tell a few friends Frances and I'm sure they won't feel like you're burdening them, they'll be glad to help.

It's good to get away sometimes and to be away from hospital and appointments and feel like normal for a while. I've got a friend in Malvern and I felt the same there as you did when you stayed in Canterbury. (I don't live too far away from there myself) It's nice that you've got such a supportive friend.

Your selfie of your boobs made me smile! xx

blueash
Community Champion

Re: Hello and scared

Hello Frances, I do not have Afib but I do have a dodgy heart and I was given all TCH chemo because of that.

In addition I took pynogenol and coq10 and my heart was fine and I managed all 18 Herceptins. It was Bibi on here that put me wise to those supplements and I will see if I can find her thread for you.

 

I could not get the combined one in her study so I take these:

https://www.amazon.co.uk/Pycnogenol-Vegeterian-Capsules-100-Count/dp/B00QJ4F0KG/ref=sr_1_2_s_it?s=dr...

 

and any Coq10.

 

Well I cannot find the original post but this is one that someone else asked about:

https://forum.breastcancercare.org.uk/t5/Targeted-therapies/Herceptin-and-improving-heart-function/m...

Frances333
Member

Re: Hello and scared

Yes, I do have good friends but don't want to burden them too much. I have chosen to only tell a couple of very good friends and not all. I live in a village and things go round quicker than a bad smell. I don't want people always asking me how I am or wrapping me in cotton wool. I want to be treated as normal. My very best friend lives in Canterbury, I'm in Yorkshire. I did go and stay with him whilst waiting to be seen at breast clinic and went straight back there after that whilst waiting for results. That was brilliant, had a lovely time and could forget what was happening a lot of the time. We are in contact regularly and he is so supportive. Talking of support I ordered 3 crop top stretchy bras from eBay the other day and they arrived today. They are really nice. I did buy the next size up as people have recommended. 

I also had a mad moment this morning and took a selfie of my boobs. At my age they wouldn't make page 3 but I wanted a reminder. Hope you are all feeling good today. xxx

Jencat
Member

Re: Hello and scared

Hi Frances, you sound as if your bc is similar to mine, except I had a micro-invasion on my lump and some lymph nodes were found to be affected when I had my op. I was told I was having chemo yesterday, but maybe be not radiotherapy afterwards. I was concerned about this and asked my bc nurse about why only chemo and she said they'll see if I need it, so I think that's probably the same for you not possibly having herceptin. xx

SueW
Member

Re: Hello and scared

Big hugs to you x
anitajane
Member

Re: Hello and scared

Hi Frances - as all the Community Champions have said to me since my diagnosis at the end of July - BREATHE!!!!
Focus on the lovely word 'curative' - I am that's for sure and welcome to the forum of incredible ladies who will always be here no matter what time of day or night. I'm still too early on my journey to really be of much help to you other than to say, just stop for a second, take one day at a time and come back to the forum whenever you need to. Sending you a huge hug Anita xxx
Jill1998
Community Champion

Re: Hello and scared

Frances,whatever happens there is lots of support here to help you through .Do you have good friends who will help you if you don't have family ? Sounds like they have caught this very early - so good chance of a positive outcome .
Frances333
Member

Re: Hello and scared

 
Frances333
Member

Re: Hello and scared

Thank you ladies. I spoke to my cancer nurse today. She said they were aware of my Atrial Fibrillation but she didn't think it would be a problem for chemo and herceptin. She also said they won't know the right course of treatment for me until I've had surgery and they have had the MD meeting and got the results. I do understand that but I can't help worrying and being scared in the meantime. I am a widow, live on my own and don't have any family so my mind is running away with me.

she did mention that they might not decide on chemo but not because of the AF but depending on size, stage etc is also a consideration. The lump is 8mm and graded stage 2 with no lymphoma invasion from ultra sound and core biopsy and have been told I was lucky finding it that small. It's another reason I am having a hook wire first. I do appreciate they won't know 100% until biopsy and I'm trying to gather information. I'm one of those who no matter what I want to know.

My biggest fear is dying from it. I can cope with surgery, chemo and right up to a double mastectomy if needs be but I want to live. Rather dramatic I know but can't help how I am feeling.

its so nice to be able to share and thank you ladies for being there. Hugs to you all. xxx

Chaffinch17
Member

Re: Hello and scared

Hi and welcome to the forum. As far as I understand HER2+ if the tumour is over 1cm chemo and Herceptin which can't be given without chemo is always recommended but if under that size it is done on a more individual basis weighing up the pros & cons. I have HER2+ and my lump was 22mm therefore I have been told that I have to have chemo and Herceptin despite clear margins and no node involvement. Hope that helps. You will be well looked after and there is plenty of support here Day and night x
charboyles
Member

Re: Hello and scared

Sending you lots of hugs Frances.

 

Peggy

Jill1998
Community Champion

Re: Hello and scared

Hi Frances -welcome .You could ask some of your medical questions re heart condition /herceptin in the " Ask the nurses" section on the forum .They will tailor your treatment to your individual health needs and weigh up the pros and cons of each treatment with you .May be worth ringing your breast care nurse and having this discussion as you are right - they may not have really noted the issues re your heart amongst all the other information discussed .
rosietd
Member

Re: Hello and scared

Frances - you are not rambling at all! 😉 There are some amazing ladies on this forum who can provide fabulous support to you. I have found this forum invaluable.

xxxx

ann-m
Community Champion

Re: Hello and scared

hi Frances,
First of all welcome to the forum, although sorry you find yourself here.
Getting a diagnosis is always a shock, so what you're feeling is quite normal.
My bc was not her+, but no doubt one of the other ladies will advise, but I understand that keeping an eye on heart function is all part of the management of herceptin treatment & your team will sort this out for you.
At this stage, there is such a lot to take in & the mind goes into overdrive, so it can help to take it a stage at a time & try not to think beyond the next stage. The herceptin issue will be dealt with once you're at that stage of treatment.
Do come & chat on here whenever you need to, there's loads of support from us all here. There is also the main bcc site which has any info you need, as well as the helpline of you need to talk things through.

hugs

ann x

Frances333
Member

Hello and scared

I was diagnosed with left breast Invasive Ductal Carcinoma and High Grade DCIS last Friday. I am also ER+8/8 and HER2+. The good news is that results of core biopsy says the tumour is only 8mm, no other lesions and no lymphovascular invasion. Right breast is normal. I am having surgery next Wednesday and having a wide local excision with blue dye sampling and sentinel node biopsy. This will be followed by radiotherapy in a few weeks.The surgeon has said it is a small lump and is a curative operation. I know I still have to wait for the final results of biopsy after surgery but on the surface it all looks good.

I will have HRT for the ER8 and my nurse said I may have chemo/herceptin for the HER2+ but might just be the radiotherapy. I have read all the literature given and it all says if HER2+ then chemo is offered. It also says herceptin can cause some heart problems. I have Atrial Fibrillation well controlled with medication and not seen a cardiologist in 8 years.

I am really getting my knickers in a twist that if I can't have herceptin then I am more at risk. As I understand the HRT, Hereceptin and radiotherapy are there to kill of any rogue cancer cells that might be left behind after surgery that can't be seen, or belt and braces as it was put to me. I am getting scared that not having herceptin will increase my risk.

i am sorry if I sound dramatic but this is all new to me. My nurse and surgeon know of my atrial fibrillation as it was mentioned when given my results, but wonder if it was forgotten when we were going through what happens next afterwards.

Please can anyone shed any light on this for me. Is it possible to have herceptin with Atrial Fibrillation? Although I wouldn't want to make it any worse as it is so well controlled. Am I more at risk without herceptin? Is there an alternative.

Thank you all for being there and listening to the ramblings of a 64 year old. xxx