I am sorry to hear you are going through this .  My diagnosis is the same, but I have 6cm at the bottom of my breast and a 1.5cm under my nipple.  I am having surgery on saturday.  I haven't been prescribed any medication since diagnosis though.  X

Hi Jovie

so sorry to hear of your diagnosis I send you wishes and hope your surgery goes well and you have a good recovery. Thank you for your message i appreciate it. Keep me posted on your progress and keep positive through the process. They say to me it’s been caught early I hope you can take comfort that someone else is on this journey and you are it alone xxx

Hi,

im getting anxious about RT  I have read so many people’s experiences and also on the internet and paperwork given to me

today I am starting to ensure I get the water drinking as I am not very good at keeping hydrated so have a tick box set in front of me every time I finish a glass of water 

also eating as healthy as I can and some walking and my arm exercises each day

Also moisturising morning and night my arm, armpit and breast area , any recommendations on best moisturiser and also for after RT

I have a focus and a plan and back to work today so my mind is busy again

CT scan this Thursday so hopefully dates of RT will be confirmed 

also have the injection tomorrow for zoledex which I think slows my ovaries ..

hope you are ok and well

xxx

sarah

Hi Sarah,

Please don't worry.  I sailed through RT,  (nothing major to report)  and to be honest it's better not to read horror stories, as it's like when you have a baby, not everyone has the same experience.  I have been using Flamigel RT. It's expensive but really good. I have the 250g tube, which I am still using 3rd week post RT. A little goes a long way.

You really are smashing this.  You are doing everything you possible can to stay ahead of the game.   Which is all you can do.  

Good luck with CT scan. 

I will be thinking of you 

Jovie xx

Thanks Jovie your words of advise and support always help me with my thoughts and it’s so warming to know I’m doing everything I can xx

I will have a look for the cream thank you for this info xx

keep you posted 

hope you feeling ok and you are also sailing through the journey xxx  

sarah

xxx

Hi Jovie,

CT scan has gone ok I was anxious but after I felt more relaxed knowing I can do the breathing when RT starts

my first session is 6th March and then 20 sessions for 4 weeks

i was wondering if you had any issues with heavy menstrual bleeding and losing clots?

I had this 3years ago which is why I had the coil fitted but now it’s removed it looks like it’s back and with a vengeance 

I am back on tamoxifen been just over a week but been bleeding 3 weeks heavy and clotty. Wondering if it could be the meds ?

I will be discussing it Monday with my cancer nurse as it’s getting to heavy to do normal stuff

hope you are keeping well 

sarah

xxx

Hi Sarah,

I am pleased your scan was OK x

I used to suffer with very heavy bleeding and very large clots, and was put on the mini pill.  This was 4 years ago.  I have since had the menopause, so my periods have stopped.  Thank goodness.  I couldn't even stand up without it leaking everywhere.  

It's so disabling.  I hope youcan get that side sorted ASAP as going through RT with heavy bleeding isn't going to be very nice .  

Fingers crossed they can help xx

Hi Sarah,

I'm so sorry to hear that you are having problems with bleeding again and hope that your nurse can offer some suggestions to help today. It must be a relief to you to find that you can manage your breathing, in preparation for radiotherapy. Most people sail through this treatment, as Jovie did. It is all very well to read about side-effects, but they don't happen to everybody. Our over-active imaginations tend to catastrophise at this stage, but let's hope that yours is straightforward too. I'm glad to see that it's not long now until your treatment starts and all this worry will soon be behind you.

Kind regards,

Jolamine xx

Thank you to both of you appreciate your responses.

keeping positive and sending you both my love 

Hello ladies, thank you so much for these posts. I have the same diagnosis and, like you Jovie, I have a 6cm outer breast lump and one at 1.1cm near the nipple. I haven't been prescribed any medication since diagnosis either.

I think I'll have a surgeon for the removal and a surgeon for the reconstruction.

Do you think pre-op exercises will be shown to me when I get the date for the op?

Best wishes to all 

Hello Belieber, 

I had been given all the exercises pre op, so I started them before op, and I found that was so helpful.

I finished my RT nearly 6 weeks ago so I see them on Thursday,  so far i was told I will be on 2 medications and have bone infusions.  This will be the first medication since diagnosis.  

I hope everything goes well for you.  Always here to let you know how it was for me, and I am sure others will help too.  

Take care

Jovie xx

Hi Saralou,

How is your bleeding now - did the nurse offer any suggestions?

Always here for you.

Jolamine xx

Hi Saralou,

How is your bleeding now - did the nurse offer any suggestions?

Always here for you.

Jolamine xx

Hi Jolamine,

so sorry not been on chat for a while I suffered with swollen feet ankles and calf’s so had to now have water tablet 

the bleeding has stopping and they said it  just could be the suppression of my ovaries now I am on the prostop injection 

I now have date for RT again which is 17th March which is good we have a plan

I'm feeling a little anxious about the RT and hoping side affects are minimal

the GP has also arranged full bloods for tomorrow and I have a pelvic scan to check that nothing sinister happening down there 

how are you doing I hope you are ok and well 

xxx

sarah 

Hi Sarah,

I'm sorry to hear about the swelling in your legs and feet and hope that the water tablet has reduced the swelling. It's good to hear that the bleeding has stopped and that you now have a date for radiotherapy. most people seem to sail through radiotherapy. The main problem seems to be tiredness, possibly from having to trek back and forth to the hospital daily. Do you know how many sessions you're due to have?

I hope that your pelvic scan goes well and shall be thinking of you on 17th.

Please let us know how you get on.

Kind regards,

Jolamine xx 

Hi Jolamine,

hope you are ok xx

swelling is keeping at bay with the water tablets so that’s ok xx

had full set of bloods domes and but concerned as GP wants me to have B12 injections daily for the next 2 weeks and take Vitamin D but I will check with the oncologist today as I not going to be able to get there with the RT appointments

plus my cholesterol is high so the need me to reduce it. Feel like my whole body is just giving up. Trying to find a easy balanced diet that helps with reducing cholesterol but high protein 

I had an emotional moment with the nurse who did my bloods , someone I have never seen through this process. I think it made me realise I need to talk about my feelings of what I’ve gone through and still going through. So difficult as no cancer groups local to attend. 
Im writing in my journal everyday my thoughts and feelings which I find helps but its not the same as having a good cry

20 sessions RT starts Monday every day 2 hour round trip to hospital there and back plus’s I am working from home but will see how i manage that

I try not to do this with the hubby as I know he struggles with worry for me and I dont  want him to feel sad and upset so I tend to hide it well, probably not the best thing to. hoping that RT I will sail through fingers  crossed 

sending you wishes and thank you for your message of support

xxx

sarah 

HI Sarah,

It is good to hear that the diuretics are working for the swelling. I suspect that, if all the residents of the UK were tested, we would find that the vast majority of them would have problems with their cholesterol levels, as the British diet is not the best for keeping these down. What did your Oncologist say about your vitamin B injections and vitamin D?

I tried to shield my hubby at the start too. He eventually went to see a counsellor and we both realised that we needed to talk and to be more open with one another. This did help us both. Can I ask whereabouts you live, when you have no cancer support groups nearby? You don't have to answer this, but if you do, I might be able to find somewhere for you. Have you made definite enquiries about this from your hospital, library and medical practice? If there is not a well known group, there are usually a number of smaller groups, often going under different names.

Well, after all of your worry about radiotherapy, you'll soon find out what it's like for yourself. I sincerely hope that you do sail through it, although I expect that you may be exhausted, when you're travelling so far, on a daily basis for 20 sessions. I lost my mum to breast cancer many years ago. She had radiotherapy and ended up with horrific burns. Fortunately, that doesn't happen now, as they have become much more accurate with the treatment regimes.

Keeping everything crossed that all goes well for you.

Jolamine xx

Hi Jolamine,

so sorry to hear about your mum it’s heartbreaking when I see and hear so many people going through different types of cancer. Sending you love and hugs

im starting injections for B12 next week every other day for 2 weeks and also the meds for Vit D hopefully these will help with tiredness and exhaustion xx

I live Cannock and the nearest groups are Wolverhampton which isn’t just a walk away. I’ve tried to find groups in my local area such as Burntwood, Rugeley, Norton Canes or Brownhills as these are closer to my home

the GP gave me groups but they not local xx

My first pretty good and I think when my Cholesterol was 5.2 in October and no 4.6 it’s come down and that a good sign? I looking at my food and will make some changes but need to focus on RT and not put to much pressure on myself over these things that I can focus on after 

hoping that burns don’t occur and you right I think the treatment has moved on so much nowadays some are very lucky patients now in a way to have what we do xxx 

sending you love as always 

xxx

sarah 

Hi Sarah,

It's good to hear that you start your injections this week, along with the vitamin D.  Does this mean that your radiotherapy can start as planed, next week? You've done well to get your cholesterol down already.

You're right, support groups seem very sparse in your area. Most are 7-9 miles away from Cannock. However, I did find a Breast  Friends Support group which claims to cover:- Burntwood, Lichfield, Tamworth, Aldridge, Sutton Coldfield, Great Barr, Erdington and Castle Vale.

Contact Us:

For help, support and information on becoming a Breast Friend member:

Breast Friends helpline (two numbers, either will reach us): 0121 424 9054 or 0121 424 9490

All calls are confidential and will be answered by trained volunteers.

General enquiries: enquiries@breastfriends.org.uk

Due to the current situation with COVID-19 all meetings and social events are cancelled
We will continue to provide support via phone and social media

Members with our patrons and new Enhanced Supportive Care nurses at the launch of our new service

Welcome to our website

Breast Friends is a support group based in Sutton Coldfield, West Midlands. It is run by unpaid volunteers who have all been diagnosed with breast cancer.

Our aim is to help local women with breast cancer through a difficult time by offering friendship, support, emotional and practical help. From the time of initial diagnosis, throughout treatment and beyond.

We also aim to raise awareness of breast cancer so that local people will seek diagnosis and treatment at the earliest possible stage.

We are a registered charity, number 1059584

You can also follow us on Facebook and Twitter"

The above is quoted from their website, I suspect that the group will have recommenced meetings again by now. Even if they haven't,  it might be worth phoning one of the numbers, to see if they can point you in the direction of anything local to you. You could also ask the breast care nurse at the hospital you are attending - the breast care nurses usually know of local groups. Other sources usually include your local library, or Citizens' Advice Bureau.  

I hope that you have some success with these and I shall keep looking to see if I can find anything closer.

Kind regards,

Jolamine xx

Hi Jolamine,

thank you so much for looking into the groups I really appreciate it and the information you have provided xx I am taking with BC nurses and they are helping me lots xx maybe this is something I can advise the support the more is needed in local community to where people live xx

finished my first week of RT and all has gone well. I’m feeling exhausted and tired and a little sore but moisturised every day a couple of times so all good xx

Also what was 4 weeks they are now doing it in 3 because they are doing the 4th week boost every day in 3 weeks so hopefully I only have 2 weeks to do now, not sure what happens after this Finnishes?

I had a pelvic internal and external scan because of my previous issues prior to Mirena coil fitted because of heavy bleeding and my results have come back abnormal so I now need to see doctor GP to discuss but I’m hoping it’s because of the injection prostap and my body going through the BC things are happening down there too causing changes 

still getting swelling now and again in the legs and feel and they feel heavy, not sure if this is the side affect the tamoxifen?

Hope you are well too and keeping in good spirits

the sunshine we have had this week makes all the difference 

xxx

sarah

Hi Sarah,

It would certainly be worth mentioning the paucity of support in your area to the breast care nurses. I am glad to hear that you have now finished your first week of radiotherapy and am glad to hear that it has gone well. I am sorry to hear about the exhaustion, but sadly, I expected this. I am sure that you'll be glad that your treatment has been reduced to 3 weeks instead of 4. Keep applying your moisturiser and drink plenty of fluids. The result of your pelvic scan is not the news you wanted, but you're probably best to get everything investigated at once and then you can get back to living a normal life again.

You will usually have a scan after your radiotherapy finishes, to see how well your treatment has worked. What happens after that will depend upon the findings.

I am ok thank you and am thoroughly enjoying this spell of better weather.

Jolamine xx

Hi Jolamine,

thank you for all the information and I will mention to the BC nurses too xx

i decided to take time out from work now I’m feeling the exhaustion xx gives me time for rest and little walks before RT each day 

Hopefully the pelvis scan will be something sinister  xxx

thank-you for confirming process after RT I wasn’t sure but assumed it would be a scan then see consultant to confirm what’s next if anything is needed  all will be good

Let’s hope the weather stays nice now and we can all enjoy some good sunshine to brighten our days .

hope you are doing ok too and keeping well xxx

Take care and I will message once finished RT next week to let you know how I’ve done xx 

sarah

xxx

Hi Sarah,

I am glad to hear that you have taken some time off work to deal with your exhaustion. A walk in the fresh air every day before radiotherapy can only help you. Have you mentioned how your legs feel to the nurse? Ask if she has any advice on how to manage this.

Here's hoping that your pelvic scan showed nothing sinister! I'm sure that you'll be glad to finish radiotherapy next week and I look forward to hearing from you.

Jolamine xx