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New to all this😞....possible chemo starting February

13 REPLIES 13
bikergirl1
Member

Re: New to all this😞....possible chemo starting February

Hi Jane,

Glad your appointment went well and you have options open to you. 

So hair loss, for me personally I embraced it, I had lovely long hair to the middle of my back with a curl but I was curious to see what I would look like without hair (did I have an odd shaped head?😂). When my hair started to come out by the brush full it was time for it to go I didn’t want to be left with thin looking hair so I gave my 10 year old a pair of scissors and said to her she had a once in a lifetime chance to cut any hair style she wanted into my hair and she didn’t need to be asked twice 🙄. Once she was done we took a picture and then I got my partners hair clippers and clipped it on a grade 1, within 48hrs most of my hair had completely fallen out. 

I generally don’t cover my head when I go out unless it’s cold because people will look at me whether I’ve got a scarf wrapped around my head, a wig on or bald. My opinion is I have nothing to be embarrassed about, I have nothing to be ashamed about and I’m proud of my bald head it’s a sign of the strength I have to go all out and get through this journey. On cold day I wear a Wolly hat or I did get some fun scarves from Surban Turban, they also have tying guides, I also brought an under cap from Simply Wigs it has a padded top that adds a bit of height (height give the illusion of hair underneath).  There is also a lady on YouTube who is useful when it come to tying head scarves and enhancing your makeup to compensate (basically no hair = make more of the face and eyes). Her YouTube is EyelineHerBlog. Everyone is different when it comes to hair loss, my hair doesn’t define who I am, I’m still me and I know it will grown back who know if it will be different but it will be fun to find out xx

Jb2501
Member

Re: New to all this😞....possible chemo starting February

Hi....thank you for your message, it's been very helpful😊. Well my appoinment went well but I'm still undecided as to what route to go down so until I get the results back from the oncotype test, I just dont know🤷‍♀️. The oncologist was certainly not 'selling' me chemo and, acording to the algorithm they use for their calculations, there's actually only a 3% more chance of it not recurring than if I have radiotherapy so it's a case of how I feel 're side effects etc but the oncotype test will tell me more. I have started on letrozole, last week and I go for my first zoledronic infusion injection next Friday so the process has started which I feel a bit better about too.

I do have a lot of people I can talk to, a couple of friends have already been through similar, but sometimes it's feels good to talk to other people so then I can talk to my friends about totally different things, happier subjects😁. I've only been with my partner a few months(long story) and he's been great although mainly tries to avoid the subject unless I bring it up first which I only really do if necessary.

How did you get on today? That's you more than halfway through your chemo now and that must be a great feeling mentally. May I just ask how you coped with the hair loss? Do you wear any kind of head covering?

You take care....Stay safe 

 

Jane xx

Jb2501
Member

Re: New to all this😞....possible chemo starting February

Hi....how did it go yesterday🤞🤞? Did you get all your questions answered clearly? I hope your weather was good enough for you to get there and back🤔. I'm glad I had no appointments this week....it woukd have been a nightmare to try to get to the hospital....I'm in Scotland!! Thanks for the advice 're trying to forget about it until nearer appointments, I seem to be less anxious now because I'm worrying about the same things all the time and what's the point🤷‍♀️. I did get some sleeping tablets though but I'm going to try only taking them every 2nd or 3rd night now that I've given myself a talking to🙄.

Take care 

Jane xx

bikergirl1
Member

Re: New to all this😞....possible chemo starting February

Hello 2501,

How did your appointment go? Please don’t think that worrying is a bad thing, I know that although I’m generally a positive person my journey through breast cancer has left me very negative at times and there have been many tears spilt and that’s  all normal and okay, you have to be kind to yourself. 

I have had a few sleepless nights and they are really no fun, do you have someone that you can talk to? I have my best friend and my partner but I also use Maggies which is a cancer charity that offers various groups and counsellors for the times when you need to talk about things that family and friends might find hard. 

As for chemo, everyone reacts differently but I have had 3 rounds of EC and I’m having 4 rounds of Doxcetaxel (I’m having round 2 tomorrow). So far my experience have been very positive the EC nausea was well controlled by anti sickness meds and I felt a little under the weather for about a week then I felt fine, the Dox is different you don’t get the nausea but fatigue is worst but it does pass and I feel a little breathless at times but that passes as well. The worst thing of all of chemo is the G-CSF injections you do for 7 days post chemo because they make you ache (they stimulate your bone marrow to make more white blood cells to try and keep your immunity up) but it’s worth the discomfort to keep infection at bay, and don’t forget it’s not forever and you are strong enough.  

sorry for the rambling message but I hope it helps x

joannajackson1
Member

Re: New to all this😞....possible chemo starting February

Hi Jane sorry for the late reply. It is lovely to virtually meet you 🙂 

The doctor said there was no way of knowing what score would come back. But throughout the surgery side of treatment they said I would likely avoid chemo. Then it came out double the size (33cm)and things changed. I am speaking to my oncologist properly today about why they have decided chemo, so shall update you once I know 🙂 

I haven’t had any MRI or CT scans. I’m am asking about this today, but assume it’s because I have no node involvement? I’m not sure. 
My advice would be to try and forgot about it until you get your results. And then when you do get them, make sure you oncologist tells  you about everything that has contributed to their treatment plan decisions and what the benefits are. 
Let us know how you get on and we will of course be here for you to support you on your next steps 🙂 x

 

Jb2501
Member

Re: New to all this😞....possible chemo starting February

Hi Joanna....sorry we have to meet this way🙄 and it does sound very familiar!! Had you oncologist given you any indication that the score might come back high? Are you having an mri scan before you start chemo or have you already had it? Yep I'll be pleased to get my test back so I can get started on the treatment, I think the waiting is the worst part. I was told that I would be getting (if I choose that route) 4 cycles of chemo but there wasn't a great deal of enthusiasm from oncologist to go down that route but it will ultimately be my decision🤔

Take care

Jane xxx

joannajackson1
Member

Re: New to all this😞....possible chemo starting February

Hi Jane,

Your story sounds so similar to mine. 
I was diagnosed with oestrogen positive BC on 4th Dec. I had a lumpectomy on the 22nd Dec and the tumour was 33mm instead of the 12mm they thought it was from the ultrasound and mammogram! I had to have a second surgery to get more margin (which meant removing my nipple) and during this surgery they found a second 4mm tumour. I was told this didn’t make a difference to my diagnosis or treatment and not to worry. 
chemo wasn’t on the cards for me either until last week. However my oncologist said that the American oncotype test showed that I would benefit from chemo. I scored a 36, which is in the high catagory. Along with the fact my tumour was bigger than expected and my age came into it too (I’m 29) I’m starting chemo next Saturday and having 6 cycles, one every 3 weeks. 3 cycles of EC and 3 of Docetaxol. Then radiotherapy and Tomoxifen for 5 years. Chemo sounded scary to me at first but then when they explained that it was to blast away any tiny cells that may have escaped into my body undetected, it made sense to me and I’m pleased that I’m having it. It could prevent a secondary cancer developing in the future of the same cancer coming back. So I’m all for trying whatever I can to stop this. 

I think you should get some clarity when your oncotype test comes back. Mine only took 10 days, so hopefully it will be quick for you too! 

Let us know how you get on 🙂 

xx 

Jb2501
Member

Re: New to all this😞....possible chemo starting February

Hi Jo....I had the lumpectomy 1st, not sure if size of lump had anything to do with it, or maybe different hospitals in different parts of the UK do their own thing but we're all different I suppose. 

At least you've got those dates now....the time will soon pass as we know.

Chat soon

Jane  xx

Jb2501
Member

Re: New to all this😞....possible chemo starting February

Hi Evie, Jo and Rose....I hope you're all well as can be. My appointment went really well thank you all. To cut along story short I'm still not sure about whether to have chemo based on today as, according to the algorithm they seem to use, It would only be about 3% more likely for the cancer to return if I have chemo than if I go down the radiotherapy, hormone tablet and bone Injection route however I've not totally made up my mind yet. They're sending a sample of my cancer to the states for some test which, again, will indicate the chances of it returning and I need to wait til that result comes back before I go back to the hospital so hopefully I'll be able to get some sleep,before then. I have to go for an mri scan too but am still waiting for the letter for that.

I think this is a fantastic site and I'm certainly finding it very easy to talk to you all.

Hope to hear from/ and speak to you all soon.

 

Love Jane xxx

Evie-S
Community Champion

Re: New to all this😞....possible chemo starting February

Hi Jb2501 - I also wanted to drop in to welcome you to this lovely forum and hope you will find lots of support and advice while you go through treatment. About 4 years ago I had a mastectomy and implant reconstruction, chemo, radiotherapy and now Tamoxifen, so I’m also happy to answer any questions you might think of. 

This is a lovely non judgmental place to come on if you have questions, but also if you are having a wobble and need to chat to others who have been through or are going through the same. Sometimes it helps more than chatting with family or friends.

Your comment about trying not to worry about what you don’t know is very good advice - I read the same in a cancer book, which said “fears are NOT facts”. As you say, it’s easier to say than put into practice but it’s good to keep coming back to when fear strikes.

Do come back and let us know how you get on this afternoon with your oncologist and I wish you all the best for your treatment. Hugs, Evie xx

Jojo1447
Member

Re: New to all this😞....possible chemo starting February

Hi JB

Its all overwhelming but just take it one step at a time.

I was diagnosed in September and started Chemo October last year.  Had 3 rounds of EC then changed to weekly taxol/carbo.  I was terrified at the thought of chemo, but to be fair compared with others i have got off lightly with the side effects.  Had a couple of days of feeling lethargic other than that I've managed to work full time from home.

I have just had call from my breast care nurse with details of treatment after chemo.

My last session is due 12/3

MRI booked for 19/3

Appointment for counselling/discuss surgery and consent on 29/3 then op booked for 16/4.

So far they are talking of lumpectomy which scares me, I want it gone with the best option of it not coming back.

Good luck with your appointment today, come back later let us know how you got on 

 

Jo x 

 

Jb2501
Member

Re: New to all this😞....possible chemo starting February

Hi Rose....sorry to hear about yours as well and it does sound very similar. It is all very scary and I keep trying to grasp to positives but then a few negative thoughts take over however until I've spoken to onc later there's no point in worrying about what I DON'T know(hmmmm easy to say). At least I've managed tò eat a weetabix and half a tin of tomato soup so am quite pleased with myself 're that coz my stomach is churning.

Thanks for the good wishes, I'll let you know how it all goes🙄

Take care

 

Jane xx

HappyVibes
Member

Re: New to all this😞....possible chemo starting February

Hi Jb

Sorry to hear about your diagnosis and that you’ve found yourself here, but it certainly is a good place to get support and information and feel the kindness of strangers. You’re not feeling sorry for yourself. This is all very scary at the beginning and that’s why this forum is so helpful.

I’m in a similar situation to you, albeit my second finding was a spread to the axillary nodes, so I had a full axillary clearance 2 weeks ago after my lumpectomy and SNB in December. I’m seeing my surgeon tomorrow for the histology results on the clearance and I don’t know whether chemotherapy will be on the cards for me too.

I’ve subscribed to your post as I’m interested to hear what others have experienced in this situation.

Sending you my very best wishes and hope your appointment with the Oncologist goes well.

Rose x

Jb2501
Member

New to all this😞....possible chemo starting February

Hi all....this looks like the kind of site I need/want(?) to be a member of. I don't know all the details of my cancer yet and have an appointment today at 3 with oncologist so will try to make this as short as possible☺. I was diagnosed on 18th December with grade 2 cancer and was told that lumpectomy and radiotherapy would be probable treatment however when I had my lumpectomy on 12th January ( just got the results on Monday passed) there was another very small, 2mm, lump hiding behind my original lump and it was grade 3. My consultant told me that he had taken both cancers out and it was gone and nothing in surrounding tissue so that's positive. I haven't slept since my last appointment so sorry if this sounds very 'feeling sorry for myself. When I found this page and read all of your stories I knew it would help me through my journey. I'm looking forward to getting to know you all and please believe me when in say I'm usually, and had been up til my last appointment, very positive. 

Thanks for reading and take care.

Until next time xxxx