Hello and newly diagnosed
sfr09
Member Posts: 8 ✭
Hi to all
I have been diagnosed just over two weeks ago and its been a whirlwind of tests, biopsies ,mri etc , and things changing , originally surgeon was going to do lumpectomy but now I have been referred to oncologist and they want to do Chemo first , It all feels so scary and I just constantly feel overwhelmed , I have lost 5kilos in two weeks as can't eat or sleep , I hope I will be ok with the treatment FEC six cycles , which I think I will start soon as I have had more tests etc , Have been reading a bit on here which helps , They suggested I do a cold cap too but should I also get a wig in case it doesn't work , any advice welcome
I have been diagnosed just over two weeks ago and its been a whirlwind of tests, biopsies ,mri etc , and things changing , originally surgeon was going to do lumpectomy but now I have been referred to oncologist and they want to do Chemo first , It all feels so scary and I just constantly feel overwhelmed , I have lost 5kilos in two weeks as can't eat or sleep , I hope I will be ok with the treatment FEC six cycles , which I think I will start soon as I have had more tests etc , Have been reading a bit on here which helps , They suggested I do a cold cap too but should I also get a wig in case it doesn't work , any advice welcome
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Cold caps are a bit of a gamble. The stats seem to be that they slow or stop hair loss for about 50% of patients and of those people, about 50% are happy with the results. I know some women have been terribly disappointed when it doesn't work but if you go in with the attitude that you have a slight chance of avoiding losing your hair there's no harm. There are worse things than being bald. Mind you, this is my second go at it and that will be enough, thanks.
Chemo before surgery is really common. It does give you extra time to consider your options which can be a good or bad thing, depending on how you are wired. Good luck. Marg0 -
Welcome to the site. Yes those 1st weeks from diagnosis are just awful...I gained 5 kg as I'm an eater when stressed. I had many a sleepless night, many many tears and just feeling constantly anxious. So many tests and so much unknown. The chemo 1st though does gice you a chance to look at surgocal optiobs with more planning, not always a good thing as we torture ourselves with the "what is the right decision" but once it's dobe you feel better. Chemo is scary but the staff will support you and we are here to talk to and ask questions. Again, less stressful once started.0
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Hi and welcome. I had chemo first with great results. My cancer shrunk and then had a lumpectomy. I have just finished radiation. So today this minute this moment I am cancer free. As to the cold cap. Some people cannot tolerate the cold cap some have no bother. The ladies I have met that have used the cold cap found it worked but some report their hair is thinner .I personally did not want the cold cap as it prolongs chemo sessions. I wanted each session to be as quick as possible but thats just me .
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@sfr09 Hey!!! welcome!!! and BIG BREATH!!! WHOA!!! Ok so sounds like you have a large tumor and thats why they want to do chemo first to shrink. I did FEC x 4 also called the Red Devil, there are a couple like this. Its a hard hitting chemo but doable. Lots of ladies have tried cold cap, my Oncologist said if I did Taxol yep no worries but with FEC said NO as it won't work. To be honest, Im so glad I didnt bother as I was quite ill on FEC and adding the cold capping I couldnt have done it. I was amazed how I transitioned to my bald from long blonde hair!! and its grown back now 14months post chemo no probs..all was a blink when I look back. Very personal choice, you can try but I had friends that their hair thinned alot and they wished they hadnt bothered as they wanted to maintain it all, so had to wear head gear anyway. Hugs Melinda xo0
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@sfr09 The first few weeks are the hardest. Once you get started its like a massive roller coaster ride, but you will come out the other end.
I was diagnosed in Feb 2016 and had 4xAC and 12xpaclitaxol/carboplatin. I also had chemo first which I think is fairly common these days. That way they can tell if the chemo is working and also gives you a chance to think about surgery. My chemo got rid of my lump but then I still went a double mastectomy as found out I was a carrier of the BRCA 1 gene.
I also used the cold cap for my 16 treatments. It was hard work and pretty gruelling at times. But I felt it was worth it. I was lucky enough to keep the majority of my hair. I only had a little thinning which was barely noticeable.
Good luck and and happy to answer any questions if you have any x0 -
Thanks to you all for your replies , I didn't really ask enough questions I feel as I was a bit overwhelmed , I really did want the surgery first and was considering getting a second opinion but he did say this was best for me and been discussed at the multi disciplinary meeting now I just want to get on with it but I still have blood tests and heart checks first , he said you might as well try cold cap only have your hair to lose! , I have a lot of hair , but if it doesn't work I didn't want to be unprepared as I am hoping I can still work or at least some of the time, I am 56 , always exercised etc . I still feel in shock but I am glad to find this forum as my friends are great but I am not great company and each time I tell someone I become a mess0
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@sfr09 its ok to become and mess this roller coaster ride can make us emotional. better to let it out than holding it inside and becoming ill from that.
Write down any questions you have before you go to appointments. I kept my journey diary with me and wrote questions as I thought of them ... then at the next appointment I would ask them no matter how silly I thought they were.
I was 52 when diagnoses I am now (NED) no evidence of disease and enjoying life.
it will be time of many ups and downs, take the time to nurture yourself.
We all cope in different ways with the shock and then the plan ahead.
We will all answer questions we can and we get the feelings and the emotions that come with this BC.
Hugs
Soldier Crab
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A breast cancer diagnosis is hard. Many ladies I met were fit and trim. Many had demanding jobs and yet had breast cancer. It does not make any sense.It is hard to take everything in. Suddenly you go from having a normal life and then it is turned upside down. I love this forum and thank all the people that have made my journey a little easier
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Yes I agree, sometimes I feel like its a bad dream, my next hurdle is telling my elderly parents and my younger sister who was also diagnosed with BC last year , they are just getting over that shock but they are not in Australia so I can't get to see them soon sadly0
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I guess you 2 will be looking at genetic testing then? Doesn't mean it is but with 2 sisters they usually recommend having it checked out.0
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@sfr09 sorry that you've joined us. Can you set it up so you can skype or facetime your family when you tell them? Might make it a little bit easier if they can see that you are coping okay. Even if you do get upset telling them it's okay to have a cry when you're telling your loved ones - it's also good for them to have a cry too - as I'm sure you are very aware because of your sister. Big hugs to you and yours. Xx Cath0
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I did tell my sister last night and we did have a cry and I went back to work today for a distraction so that helped too its two weeks today since diagnosis and I am starting chemo next Monday , the oncologist mentioned genetic testing but didn't think it would show anything as mum , aunties all okay,
Thanks to you all susanne x1 -
Hi there lm nearly 5 years post and l just wanted you to know its the worst news you will ever get but its do able lm living proof. Its shitty and its good, what you make of it is up to you. It changes you and those around but you do get through it. Xxx adean1
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I had no family history on my Mums side until myself, sister and her daughter. As yet they haven't foubd a gene but keep retesting as more genes identified. You can ve the 1st generation with the mutation. It can ve helpful to at least have the genetic counselling and see what they think. Thete is no hurry. As my breast surgeon said to me...positive or not it doesn't change tbe treatment needed today for your breast cancer. What it does change is what you might do later to avoid another primary or ovarian cancer if you carry a mutated gene. I had it done after my chemo.0
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@sfr09 It is a tough road, absolutely, Ive had a recurrence twice in 4yrs and it was harder the second time, but you know what? I did it, I dont know how but I did, I got through and am going on 2yrs clear again and just had a mastectomy/reconstruction 2 weeks ago, my final piece to get rid of all of this now. I did genetic testing but only because I had to have a mastectomy due to recurrence and they wanted to be sure I didnt have the Gene. Only my Mum had BC no other history and I was negative. But there have been ladies on here with NO family history and tested positive. Id be guided by your Oncologist or Surgeon as my Surgeon organised mine. Hugs xo Melinda1
