Newly diagnosed

Hi Beachwalker19

I received good news in that they have now removed all the cancer so no further surgery. I will be seeing the oncologist in the next two weeks to discuss my plan. I plucked up the courage to ask what stage it was and was informed.stage 2 but the oncologist my differ. Dreading chemo but also want to get started so it finishes earlier as would like to go on holiday with my family because we had to cancel this one. 

In addition, prior to my surgery, during and after I consented to photographs for training purposes and was informed by my surgeon that she is  off to America in December. I did offer to go in person though. This is great news as my surgeon has done an amazing job. 

How are you getting on? Did you have  many side effects with your treatment?

BB

Hi ,

Glad you got good news.Thats brilliant.

Honestly I was pretty good on Chemo, lost hair, had a bit of constipation first few days after chemo,  broken sleep on the steroids, awful taste in mouth, but the first three chemos I felt fine really, not really anymore tired than usual, no sickness etc. Docetaxel was worse for me though, that was a bit more rough. 

Eyelashes and eyebrows went with Docetaxel, I had backache, joint and bone pain, days 4-9 were the worse, flu like symptoms, more tired, weak etc. I developed Hand, Foot Syndrome which was pretty bad, the skin on my hand and feet, went red, it was a bit sore and itchy. I got cream for it, the skin blister white on my feet and peeled off. I got chemo rash on my face and neck. My fingers and hands were sore, even my fingernails hurt to touch.

After chemo finished, I lost 4 toenails, the 5th has just half gone and it’s four months since chemo finished, my fingernails were tender for a while, they went very brown, little ones turned black, I thought I was going to lose them too, but so far I’ve hung on to them, although 2 or three are short short were there split off.

There are pretty minor things though. I still suffer with Lymphoedema but can’t do much about it and I have phlebitis in chemo arm as veins are damaged, hopefully that will heal although oncologist says it will take a long time.

Hugs x

Hi Beachwalker19

Thank you for informing me. I am so glad you are doing well. I have received an appointment to see the oncologist on the 20th September, I feel that this is quite await. Diagnosed 5th July, two operations and now it looks like chemo won't start till very end September or October. I feel rather anxious and although I don't want to go through chemo I also want to get started so I can see an end to it all. Does this make sense. 

BB

Hi West end girl

Very similar situation for myself. I had a breast lump 28mm, with 5 large tumours in 5 lymphnodes grade 3. I did feel the lump in my breast but not lymphnodes. I have had lumpectomy and a second operation for further tissue removal. I have since been informed that it has all gone and I am ready to start chemo. My diagnosis is ER+ PR+ and Hert2+++. I too had a CT scan to look for further spread and thankfully it hadn't. I don't feel poorly in fact I feel great and still can not believe I am in this position. It has Been a rollercoaster but I have and will continue to remain positive. 

There is more treatment options for Hert 2 positive and treatment has cone along way. If you want to ask any further questions, if I can answer or help in anyway please let me know

BB

Hi ,

I dreaded chemo, However on the morning of first chemo I was distracted by both my younger girls crying, then aged 15 and 12, I was so worried about them I didn’t really think about what was going on.

I know this doesn’t really help but I was diagnosed in October but didn’t start chemo till first week in January so it was 3 months for me. It should have been December but with Christmas and I wasn’t sure if I wanted chemo so oncologist let me have the 2 weeks over Christmas to decide. I totally understand the not wanting chemo but getting the ball rolling as the same time. 

You’re bound to feel anxious,  it’s a very big step, but it’s a step on the road to recovery. I also think the wait gave me the chance to prepared myself mentally and my body was healed from both my surgeries so I was in tip top condition to start chemo.

Hugs x 

Hi Beachwalker19

Thank you for that I now feel that my feelings are normal. My children are aged 18, 15 and 11. They were devastated when they were informed of my cancer as I lost a friend 4weeks prior to my diagnosis to breast cancer. I have explained to them that the circumstances and diagnoses were completely different and that I will get through this but there may be times when I am poorly through treatment. My daughter who is 15 is the one who has taken it quite bad as my friends daughter is one of her best friends. I have involved her in the process and she has helped with my wigs therefore I am Hoping I have prepared my children. Your children are of similar age, have you any suggestions.

BB

Hi ,

O Gosh yes totally normal. I have two older children who live away from home. They took it quite badly, however my then 15 year old was devastated, she has never wanted to see my bald head (although my hair is growing back now, thankfully) she burst into tears and flew the room when my 13 yr old said “ So will you be bald like Dad,”

My 13 year is very much like me, just straight forward and says things as she sees them. We are both right let’s get on the things, whereas my 16 yr old is very sensitive and a worrier. Im not at all surprised your daughter is having a hard time, its dreadful for both her and her friend, as it must be so raw for them both!

If you have a Macmillan Unit near you, I would pop in and speak to them, they have a booklet about telling children, I know you have done that, but I think it might have things in there you could look at together. My breast nurse was also fantastic she said “It’s not what you tell them, it’s what you DONT tell them”,their minds can do overtime if they aren’t informed about each procedure and what could happen during treatment. 

I felt awful telling mine, although I was diagnosed last October we didn’t tell the children till January as I was about to start chemo and i just wanted to be able to tell them the whole story. My tumour was gone, scans were clear etc and what the plan was, which seemed to help them. My daughter was doing her GCSEs Mocks when I was diagnosed I just couldn’t tell her. My eldest daughter asked a lot of questions so I did tell her I had had a lump removed but didn’t tell her it was cancer for as long as I could.

I don’t have any tips as such. Just be honest with them and ask them if they have any questions at all, DO NOT USE DR GOOGLE, most  information is out of date and doesn’t relate to you, your cancer is unique to you, your treatment is too. From what you have said it sounds like you have done all the rights things.

Sending Hugs x x

O and btw even with everything we have been through this last year and considering my daughter doesn’t do well in exams etc and she struggled with revision, panic attacks and anxiety during the GCSEs she did really well. Let your kids school know as well, my girls school were brilliant.

Hi Beachwalker19

That's fantastic news that your daughter did really well in her GCSEs. My daughter will be sitting hers in May. The breast care nurses have gave me books that my youngest son has read with me but the older two haven't as yet but I am sure they will in their own time. The one thing I did was google and I agree it's not the right thing to do. I also googled the nottingham prognostic score and panicked because it stated that I had less than 50% chance of survival in 5 years. I contacted the breast care team and was reassured that it was old information and such information is only used for the oncologist. This information was also confirmed by my surgeon. 

I did inform the school prior tothe holidays and will contact them again as my youngest has now started at the school. 

How do you feel now? You sound amazing.

BB

Hi , 

I think for my 16 yr old once the initial shock was over, she did ask a few questions which I thought was good. I’d said if there was anything they wanted to know to ask me and if I didn’t know I would find out from my Breast Nurse. She didn’t want to come to see the oncologist as he had said he was more than happy to see them both to explain anything to them, which I though was good.

All the girls teacher were made aware of the situation and their Form Tutors have been amazing.  My 13 yr old didn’t want her friends to know, however she did agree to one of her friends being told. I think for her it was just that school could be a place where things were ‘normal’ and things didn’t revolve around cancer treatments. 

My eldest did google things, I did tell him not too but I think he just wanted to know more about chemo as there are so many horror stories out there and I think once he saw all the side effects it was a concern, but after my first couple of chemos he was a lot more relaxed. I worried about my eldest daughter as she is on the other side of the country and felt helpless and a-bit out of the loop.

I’m being as positive as I possibly can, for me it’s the only way. I am feeling generally good, I still have some slight Lymphoedema and I have vein damage in the other arm, and I don’t sleep well.

I’m concentrating on the good things so I have eyelashes and eyebrows again, my skin feels a lot better and less like parchment! I can enjoy food again as my tastebuds have also recovered and hair is growing slowing. 

The kids are doing well and I’m trying to maintain a healthy weight and exercising (mainly walking) as I hate aerobic type exercise I’d rather put music on and dance lol.

Wishing you all the best x x

Hi Beachwalker19

You sound very similar to myself I would rather dance however, I have no rythmn lol. I have just returned from hospital as I found another lump. They took 2 biopsies through my nipple and boy it hurt. They don't think it's anything but did state it's not a cyst. I pray it's nothing. I remain positive as nothing has shown up previously on all scans including CT scan. My concern is that I was diagnosed 5th July had two lots of surgery and no further treatment as yet. Would anything appear with in this time scale. 

Sorry I'm asking you all these questions you probably won't be able to answer. But hey ho I have to remain positive. 

Sending my love

BB

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