Greetings!

[@Jolamine]‍ 

@katielouise2310

@Jeet123

@Litchielou

[@Tas21]‍ 

Hello everyone! Hope everyone here are keeping safe and well.

Not been updating in the past weeks wth my recent diagnosed as I’m waiting for all the treatment to be sorted out.

After 5 weeks of waiting I finally got a copy of biopsy result sent to me by post after I had lumpectomy in mid December 2020. 

Diagnosis;  .7mm grade 1 Invasive Ductal carcinoma, no LVI, (don’t know what does it mean) lymph node negative 0/4, clear margins, ER 8/8 HER2 negative.

Treatment;  Right wide local excision and sentinel node biopsy 16-12-20

Treatment Plan;  For adjuvant radiotherapy to right breast and to continue adjuvant Tamoxifen 20mg tablets for 5 years. 

This afternoon will be my first treatment of radiotherapy, next 11-02, 12-02, 15-02 and last will be 16-02. Only 5 sessions of radiotherapy. Hopefully everything goes fine with the treatment without any complication and pass through all the nightmares and look forward to a complete healing. Amen. 

Thank you all for your kind messages here. It really appreciate your effort of messaging me and it really helped lighten my burden after being diagnosed with BC. Sharing your experience really give me hope to continue this long journey to full recovery.

Wishing you all the very best! 

Sending you all my love!! Take care and always keep safe. 

Hugs,

LL2011

Hi Lagerlime,

II have been thinking about you and wondering if you had heard anything, so thank you for the update. If you had to have cancer, this all sounds fairly positive.

I am not a doctor, but I understand that LV1 stands for lymphovascular invasion and, this indicates the presence of tumour cells within lymphatics or blood vessels in the breast surrounding the invasive carcinoma. This can indicate an increased risk of lymph node involvment and distant metastases, so it's good news that there is none present. How are you managing with Tamoxifen?

I hope that your first radiotherapy today goes well and, that the course does the job for you. Please keep in touch and leep us informed of how you're gtting on along your journey.

Kind regards,

Jolamine xx

Hi Jolamine,

Thanks for the prompt reply. 

Thank  you for explaining me about the meaning of LV1. All happenings and medical terms I’ve encounter are new to me. I understand you know a lot of things (medical terms) base on your experience and very pleasant to know you finished your journey to “cross the pond” and congratulations you won the battle! 

I think I was just lucky that the lump has been detected very early and just one operation I got the clear margins. I’ve been to different cancer website and go to chat thread and read their discussions, some of them got 2 operation to clear margin. Had radiotherapy up to 20 sessions. That was Year 2019 that all undergoing rads must finish 15-20 sessions. 

Well, about my first and second rads yesterday, all went well. I start applying E45 on to my right breast 2-3x a day as it started getting sore and red. Later will be my third rads and finish Monday and Tuesday. 

I read some comments that after the radiotherapy is done you really feel knackered. One suggested to drink a lot af water to flush out the radiation inside our body and that make us feel better as radiation stay in our systems for weeks. Not sure if this is proven as we know individuals have different ways to recover. I have no problem with drinking a lot of water as I drink at least 3 liters of water, tea and coffee. (2 mugs of tea and 1 mug of coffee a day) 

With regards to taking Tamoxifen, I’m taking the tablets nearly a month now, but so far so good! I was searching the effectiveness  and side effect of  Tamoxifen and I read a lot of feedback. Most of the comments are negative... They experience hot flushes, insomnia, gain weight etc. I cannot tell more how it affect me because it’s not long ago since I start taking this medicine. 

How about you? Can you please share your experience in taking cancer medication? I bet most of us have comment either positive or negative, it does not matter as our body react differently to any treatment and medication. 

Thank you my dear Jolamine for keeping in touch with me. It mean a lot to me. I will keep posting here until I finish my treatment next week. 

Lots of love and virtual hugs,

LL2011

Hi Lagerlime,

Not everyone gets clear margins first time, so you are fortunate that you didn’t need any additional surgery. I am glad to hear that you are coping well with Tamoxifen so far. We always hear about the bad reactions but some people sail through with no ill effects at all and, we seldom hear about these. Mine is a long story. I was initially diagnosed with Pure Mucinous Carcinoma, grade 1 with no lymph node involvement. I was told that if I had to have cancer, this was one of the best to have, as it was less aggressive than others and less likely to spread.

I had a lumpectomy first time around, followed by Tamoxifen for 1 year. My Pathology results showed that my margin wasn’t clear, but my surgeon insisted that he had noticed this at the time and taken another sliver away. Six months later I discovered a lump in my other breast. My surgeon told me that this was fine and refused to test it. He wanted me to have radiotherapy, but I refused on the grounds that there was no point in treating one breast whilst ignoring the other. We had a Mexican standoff for a few months, then he referred me to see the surgeon who was in charge of all the surgeons in the area.

He eventually examined me and did all the necessary tests. Fortunately the lump was benign. By that stage, it was too late for me to have radiotherapy. This new surgeon offered to take over my care and, although it meant travelling another 3½ hours to get to his hospital, I accepted.

Six months from discovering the second lump, I discovered another one in the original breast. This time I wasn’t so lucky and, had a double mastectomy, followed by Letrozole for 6½ years.  Unfortunately, I had problems with both of these drugs. My emotions were all over the place with Tamoxifen, I cried copiously, was constantly exhausted, didn’t sleep well, had drenching hot flushes, loss of appetite, oedema, visual disturbances, liver changes. I was eventually prescribed medication to help the flushes. In the end I had to have both eyes operated on for cataracts. I also developed Lymphoedema in both arms and hands and am still attending the Lymphoedema Clinic for treatment of this.

When I started taking Letrozole most of these symptoms continued, but my joints all became especially sore throughout my body and, I also became nauseous, had increased hypertension, anxiety, dry skin, heart palpitation, memory and concentration loss, cough, dry mucosa, increased urination, musculo-skeletal pain throughout and an itchy skin. I was again given medication for some of these symptoms, but this only made matters worse, so I eventually stopped them. My joint pain became so severe that I eventually had to have both knees replaced. By this time I had put on almost 6 stone in weight and, it has been quite a fight to lose this.

Having said all this, I would take the same treatment again in a heartbeat, if it was going to give me another 11 years with my family.

I am glad to hear that your first rads went well. Although I haven’t had any, I notice that many people who have, advise to drink plenty throughout. It may well leave you knackered and, if it does don’t try to fight it, just listen to your body.

I hope that the rest of your rads go well. Please remember that we are always here for you.

Kind regards,

Jolamine xx

Hello again Jolamine,

What a long informative reply. Thank you!  So lucky to be able to meet you and join this support group and chat to people with similar health problem. Every time you tell me about how you fight against cancer/health crisis it give me hope and make me think positive to carry on whatever come along my way. 

Taking Tamoxifen is not a problem with me. Although I have sleeping problem before I was diagnose with BC and taking Tamoxifen, it does not bother me if sometimes at 4:00am I am still awake. Fall asleep later on and get up 9:00 am. No problem as I am not working. The following night I sleep soundly. So being insomniac (sometimes)  is not a reason of taking Tamoxifen. My appetite still the same, no hot flushes at all. I think this is because at the age of 40 I had hysterectomy and no more sign of menopause, hot flushes, skin rashes, dryness, etc. But as I said previously it’s too early for me to say and detect any side affect of taking cancer medication. 

Ongoing radiotherapy, after 3 session I don’t feel any changes at all except sore in my breast and the skin became red like sunburn. E45 really help to lessen the dryness. 

I am really amazed how you cope all those health crisis you’ve been through. You are really a strong lady with great determination and I admire you for your  bravery.  Our family is always our inspiration we can wish for a longer life so we can be with them for a bit longer. At my age, especially I have this painful osteoarthritis, which my GP prescribe me Vitamin D, my high blood pressure has been controlled with maintenance. So far, at the moment I have four sort of medicine taken daily. if I survive for a couple of years from now with this breast cancer that will be a bonus and I thank God for that. 

Before I have a nice job I love most for 7 years. Last year during the first lock down I was not working for 3 months and on furlough. When I’m back to work, because of covid 19 my job is not easy anymore and I’m struggling to cope especially my job requires standing most of the 9 hours I’m at work. Have time to sit down for an hour during lunch break only. In the evening my lumbar spine is killing me. Plus so busy at work with additional things to do and I find it very stressful and I was not happy anymore...so I resigned September 2020 my  last month of work. 23 October 2020 I had bone density as I requested to my GP to have one after 7 years had my last bone scan. 

26 October 2020 had my mammogram, (repeat after 3 years.) November had 2 diagnoses with my bone density result which is severe osteoarthritis, and got a letter from breast Center requested me for another mammogram as they found something they need to double check. 

Third week of November 2020 after they taken some specimen inside in my right breast for biopsy, I was told with my pathology that I have breast cancer and I need to undergo breast operation. At that time, my world seem turn upside down. I thought I will enjoy my life being early retired (without pension) but what I encounter was health problem which is hard to deal with. Had many sleepless nights. I lost weight drastically in just a week. 

I speak to my husband and tell him everything what is the result of biopsy and warned him not to tell any one what’s going on with me. I want to keep it secret while I’m undergoing treatment. What worries me most is that I don’t want to be the subject of their conversation and talk about me dying. Until now, even my in laws did not know about it. Even a church congregation where I am a member they never know what I’ve been through lately. I’d rather share my story to people a real strangers here as they will always understand how we feel as we are “rowing on the same boat.” I will tell my relatives, in laws and friends one day when I’m ready but not now. 

Pardon my message a bit long this time. I talk a lot. Thank you for keeping in touch with me. Now I find somebody I can confide with. 

Lots of love and virtual hugs. Xx i

LL2011 

Hi Lagerlime,

I have to be honest and tell you that I haven't always had a positive attitude, I get black days just like anyone else. I lost my Mum to breast cancer 20 years before I was diagnosed. She had a horrendous experience and, this was my picture of cancer. Since then I have realised just how much diagnosis, treatments and after care have improved in the interim. There is just no comparison between what we both experienced.

As you know my care wasn't all that it could have been and, I had to stand up for myself at times. I have been very fortunate in the excellent care and support that I've received from my family and friends and, this along with the tremendous support I had on this website from friends who are sadly no longer with us. Without this I doubt that I would have come through.

I know that you have retired and were looking forward to making the most of your retirement. I was just about to retire at the tme of my diagnosis too. I have my own business and am still working, as having too much time on my hands would only leave time to worry. I am better worrying about other people's problems than my own.

It is totally up to you who you tell. I found it much easier when I told everyone, as it was impossible to hide the elastic sleeves which I have to wear on both arms and hands for my Lymphoedema. I also have to have manual lymphatic drainage for 2 weeks out of every 12 and have 5 layers of compression bandage applied twice a week, throughout these two weeks.  I have found that a lot depends on how you tell people, as to how they'll react.

I always tell people in a matter of fact way, as my bandages elicit a lot of questions in supermarkets and all sorts of places. I tell people straight out and, if they proble further, I just saw that it's a nuisance, as it makes it awkard to do things.  My general attitude has always been well between myself and my care team we'll get through this. People won't feel sorry and talk about you dying unless you lead them to think that this is the case.

I agree that it is so much easier to share your story with total strangers who are 'rowing in the same boat' and who totally understand where you are in your cancer journey. I'm sorry, I think that this is another long message from me. This first year is the hardest, but don't lose sight of the fact that you're getting there.

Kind regards,

Jolamine xx

Dear Jolamine,

I am so sorry to hear that the cause of death of your Mum was breast cancer. This is what people think that once you have cancer your life will be shorten no matter how old you are. But I believe it is depend on what sort of cancer you get. I’ve heard a lot of stories about cancer survivors and they live a cancer free life. Just like  I mentioned previously that my first husband died of brain cancer at the age of 38. No chance surviving.

Someone says, once you have cancer or terminal illness be thankful and it’s a blessings in disguise because you have time to prepare for yourself what needs to be done once you’re gone.  That’s how I feel, whatever happens I am preparing for myself for the next journey after this....  ‘the life after death’.At the moment I believe I have a high chances of getting over with this crisis and hopefully after the fifth radiotherapy next week all the sleepless nights and anxiety will be over. As I said, this is just the beginning of my long journey and I cannot say what lies ahead of this journey. Only God knows.

I got a Lymphoedema brochure and read them all and understand what is this all about. My question is.. when did you got that Lymphoedema  is it after your lumpectomy or double mastectomy? How long until it was completely healed? 

The reason I want to keep this from people around us is I want to avoid the “how are you’s and are you okay’s” question from friends and in laws. I don’t want them to worry about me and keep me updating or calling me how I get on. This lock down really help me shielding not seeing my friends because if not lock down and we see each other regularly, once they will see me in person of course they will notice that something wrong with me as I lost weight so badly.

The last time I’ve meet my 2 friends was second week of October 2020, we had lunch in town. The same day on my way back home I got car crushed but managed to drive home safely. Because the frontal part of my car has been badly damaged and needs to send out to the shop for repair, I have not driven for a month, then November had 2 diagnosis (severe osteoarthritis and breast cancer) plus lock down. Hopefully when lock down will be lifted and we are allowed to mix people from different household, and also my rads is finish and everything’s goes well, that is the time I will see our friends. I hope I will be back in good shape so they cannot question me what happen. 

I have 3 grown up kids from my first marriage, they know since day 1 I was diagnosed with breast cancer. I assure my kids that everything will be okay as my breast team were so lovely and helpful. Health service is fantastic and it looks like they won’t let me go until I undergo all the treatment they offered to me.

I know and understand how you’ve been through. Having a cancer give us  physically and emotionally exhausted. I am really pleased I’ve found this site and meet you as my support group during this long journey where I can easily talk to and share with what I’ve been through. I will carry on rowing my boat up to the finishing line and face whatever hindrances that I come across.I believe that God is in control and He is my company along this long journey. Amen. 

Best wishes and lots of love. Happy LOVE DAY!!

LL2011

Hi Lagerlime,

We all have to die of something and, having a solid link to the church helps many people in their preparation and acceptance of this. Still, there are many who are afraid of death and, would rather go to bed one night and pass peacefully without waking up the following day. Until we are faced with the situation it is hard to say how we’ll react. It must have been so hard for you losing your husband at only 38, especially when you still had 3 young children to care for. I lost a young colleague to brain cancer too. He was only 26 and had undergone several long and gruelling operations, but sadly the surgeons couldn’t remove the entire tumour.

You are right that it depends upon what type, grade and stage our cancer is, as to what the outcome is likely to be. You are fortunate that breast cancer is one of the types with a better outcome and you have caught it early. You have every chance of living a long and cancer-free life after you complete your treatment. The first year is always hard, but it is ‘doable’. Half of the trouble at this stage is that everything happens so quickly that we no longer feel in charge of our own lives. Once your radiotherapy is finished, you will gradually begin to get back on track and take ownership back again.

What a pity you had the car accident in October – this just goes to show how tenuous life is. Even with a cancer diagnosis, many people die of other causes. Fortunately, this just goes to show that the Lord is not ready for you yet. We are so fortunate to have the NHS and all of the fantastic care and attention it offers. I am still attending the lymphoedema clinic 11 years on and, will possibly have to do so forever. My lymphoedema started about 6 months after I had my lumpectomy. I kept re-sizing my rings and found that sleeves on some of my clothing were getting tight. It wasn’t until a chance comment that one of my nurses suggested I got this seen to, that it was diagnosed. Sadly, I’m lucky enough to have it in both arms.

I hope that the rest of your radiotherapy goes well this week and, that you have no need of the preparations you've put in place for many yyears to come.

Kind regards,

Jolamine xx

Hello Jolamine,

It takes a couple of days before I answer to your letter. Firstly- I waited for my fifth radiotherapy to finished that was yesterday. Secondly- I’ve been struggling recently with my both arms and stiff shoulder. It’s difficult to lift when I get dressed, soap my body when in the shower. I had this pain before I was diagnosed with BC in October last year. I though it is just simply a pain of arthritis but it seems not. Arthritis pain is in our joint, right? but mine was throbbing pain the entire arms down to my elbow.  I lay down flat when sleeping, I cannot lay on my side as pinning my shoulder/arm against the bed make it so painful. 

Since had my lumpectomy 2 mos ago I keep exercising my arms at least 2-3x a day but recently the pain and stiffness is getting worse! I have no plans to contact my Physiotherapist as she already discharged me after knowing that I have BC, so I google exercise for stiff shoulder. I come across to a website with video on how to do shoulder exercise at home. Alas! It really helps lessen the pain and don’t feel throbbing pain in the past 2 nights. It give me a relieve since then. 

That’s right, some people are afraid to die. But we all go through it wether we like it or not. Overcoming a health crisis  is a great gift we must thanked for that we are given a chance to enjoy life and see our families, see our children growing up and see our grandchildren. I know there are unfortunate people who does not live longer after their diagnose but that’s life is all about. My husband said, “life in the UK, you’re born, pay tax and die” lol! That’s why when we are given a chance to live a longer life we must treasure every single moment and enjoy life to the fullest. 

With regards to my full radiotherapy treatment, I’m so glad it’s all done now! I will wait for an oncology appointment from now 4-8 weeks for check up. Treatment goes fine but the skin of my right breast look cooked, it turn really dark compare to my left boob. According to the radiographer yesterday It takes at least 3 weeks until the radiation in my breast faded away. That’s why it is advisable to drink plenty of liquids to keep hydrated.  I will keep an eye for some side effect like blistering of breast skin and lympoedema as it is too early to see any sign of side effect at this stage when I had just finished my rads.  

After the biopsy and know the result that you have cancer that’s the time your views of life changed, your emotion changed and left us physically exhausted. I passed 2 months since my diagnosed and I feel relieve now that the lumpectomy and radiotherapy has been done and hopefully my mind is in peace and look forward with great expectation.  Above all, I thank God that He is in control of the situation and He is my comforter during those dark times. 

Thank you so very much for taking the time to write to me. That is very much appreciated! You help me a lot in dealing with my BC by sharing your own experience. Your message mean a lot to me. I will  keep in touch with you from time to time until I see my oncology possibly by the end of March and give you some updates.

For now, best wishes to you, take care and keep safe at all times! 

Sending you lots of love and virtual hugs.

LL2011