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35 newly diagnosed BC grade 2 ER+

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Re: 35 newly diagnosed BC grade 2 ER+

Good luck for today shablah, my body is the same as your. Feel aching all over and muscles and bones had me thinking it had spread there. Defo mind playing over time and making us worry. It really is a shock to the whole system. Xx

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Re: 35 newly diagnosed BC grade 2 ER+

Awww am so sorry about your diagnosis lilyb84, it’s not fair especially with little babies too!being pregnant is mean to be such a wonderful experience and to have it tainted by this is unfair. 

 

My diagnosis part seems to be taking forever my initial apt was on 22/11 and I was due back in yesterday for final result (HER2) but consultant cancelled as the HER2 result has still not come back, I feel like it’s spreading as the days / hours go on and am making myself ill with worry. 

just feel in limbo, we finally told all our close family and friends and it’s so emotionally draining I feel like I have just slept all week. 

Where are you at treatment wise lilyb84? Hoping one i know the plan I will be able to calm down, am a bit of a control freak and hate having no control and the unknown is completely petrifying me! Xx

 

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Re: 35 newly diagnosed BC grade 2 ER+

I totally hear you, and that is normal. You’re suddenly told something you never thought could happen to you. I’m a very positive, practical person and have found myself go crazy these past few weeks. Many strong ladies here who will inspire you with their strength (and you will soon find yours again) 

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Re: 35 newly diagnosed BC grade 2 ER+

Hi lvp84

 

I know it's so unbelievably shocking to even be told you have cancer. Even my  own reaction to the news has shocked me. I've always thought I was quite strong but I've never felt or reacted to anything like this in this way before. I've always been very practical more than emotional, now I'm hypersensitive!  I'll post again tomorrow and let you know about the clinical trial. 

 

 

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Re: 35 newly diagnosed BC grade 2 ER+

Yup, I know that feeling. I went to a one stop breast clinic and oncologist checked my lump and said he didn’t think it was anything sinister... 3hrs later I was told it was actually suspicious of cancer. It’s way too much to take in, I’m not surprised your body went into shock. It gets easier though, good luck tomorrow 

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Re: 35 newly diagnosed BC grade 2 ER+

Hi lvp84

 

No I don't think I have the flu. I think my immune system is playing tricks because it's been so shocked. I walked into that clinic on a Monday morning 2 weeks ago feeling normal and well, by the Tuesday evening I was having raging flu symptoms through sheer shock of having had a mammogram, ultrasound and biopsy and being told there was a lump there all on the same morning. I had no idea as I didn't even have a lump. On the Tuesday morning I went back to have the other one biopsied by stereotactic mammogram, my body and brain haven't worked right since! I am slowly coming round now though, I  will find out about that clinical trial tomorrow and let you know what it's about 

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Re: 35 newly diagnosed BC grade 2 ER+

Whoops mobile replying means I did something funny there in my post with copying your responses. Ignore that!

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Re: 35 newly diagnosed BC grade 2 ER+

Hi Shablah,

 

one step at a time, try just focusing on that.


@Shablah wrote:

Hi lvp84

 

Thanks for your reply. I have a pre op assessment tomorrow. I am terrified of anything medical I'm a total wuss but I feel the same as you,I can't wait to get this out of me. You are right to deal with this one step at a time I'm dealing with this bit by bit now. I'm slowly getting my marbles back but I'm still in shock and my body aches all over. Can I ask you if they talked to you about a clinical trial? The surgeon I saw told me about a new clinical trial they are doing to prevent second surgeries. I was in no fit state at the time to take it on board and the surgeon recognised that and said the nurse will go over it again next time you come in. Do you know about it? You don't have to say if you don't want to.  I just got to get tomorrow done that's all I'm thinking at the moment.  



@Shablah wrote:

Hi lvp84

 

Thanks for your reply. I have a pre op assessment tomorrow. I am terrified of anything medical I'm a total wuss but I feel the same as you,I can't wait to get this out of me. You are right to deal with this one step at a time I'm dealing with this bit by bit now. I'm slowly getting my marbles back but I'm still in shock and my body aches all over. Can I ask you if they talked to you about a clinical trial? The surgeon I saw told me about a new clinical trial they are doing to prevent second surgeries. I was in no fit state at the time to take it on board and the surgeon recognised that and said the nurse will go over it again next time you come in. Do you know about it? You don't have to say if you don't want to.  I just got to get tomorrow done that's all I'm thinking at the moment.  




And on the aches, my goodness ever since the diagnoses my entire body has been aching. Others will tell you it was the same for them, don’t panic, it’s most likely because you’re so tense / anxious (or you do have the flu as you mentioned that? I hope not). I’m still aching all over and despite being told it’s early stage I feel like it’s spread all over.... the mind can play some wonderful tricks on you so don’t let it run wild. 

they didn’t discuss any clinical trails with me, where is your oncologist based? I don’t think you can make an informed decision about anything until you know more about your diagnosis, find out as much as you can and you can always report back here. In any case I am curious to hear about this clinical trail!

 

best of luck tomorrow, waiting is really so hard. I was sh*tting bricks before each appointment and I know I will be again this coming Friday. But you’re in good hands so try not to worry ❤️ And as for the operation, I was actually really calm on the day... general anaesthetic means you just have a nice little sleep and it’s all done without your knowledge! 🙂 

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Re: 35 newly diagnosed BC grade 2 ER+

Hi lvp84

 

Thanks for your reply. I have a pre op assessment tomorrow. I am terrified of anything medical I'm a total wuss but I feel the same as you,I can't wait to get this out of me. You are right to deal with this one step at a time I'm dealing with this bit by bit now. I'm slowly getting my marbles back but I'm still in shock and my body aches all over. Can I ask you if they talked to you about a clinical trial? The surgeon I saw told me about a new clinical trial they are doing to prevent second surgeries. I was in no fit state at the time to take it on board and the surgeon recognised that and said the nurse will go over it again next time you come in. Do you know about it? You don't have to say if you don't want to.  I just got to get tomorrow done that's all I'm thinking at the moment.  

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Re: 35 newly diagnosed BC grade 2 ER+

I gave myself many mini panic attacks googling, please don’t. Listen to the doctors, ask questions here and stick to that. Such great news you’ll have surgery next week, I was actually excited for surgery as wanted the thing out ASAP. Baby steps, that’s how we all get through this, no need to think about the absolute worst case scenarios, that’s not where you’re at. Keep checking in please 

 

and no I haven’t had a chance yet to meet any of the support groups, still digesting everything and waiting to find out what my treatment protocol will be...

 

x

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Re: 35 newly diagnosed BC grade 2 ER+

Hi Jem,

 

I don't have advice but have just been diagnosed myself at 35, and I'm pregnant with a 3yo son - so understand a bit of what you're feeling! Sending lots of positive thoughts your way, we'll get through this!

 

x

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Re: 35 newly diagnosed BC grade 2 ER+

Hi 

 

Thank you for the info. The surgeon has just phoned me he said he has a vacancy on his list for next week so hopefully it will happen soon. You are younger than me, I'm 49. I'm not googling anymore. I've given myself enough nightmares now I'm just looking forward and doing whatever they say at the Hospital. Thank you for your reply. Have you been in person to any of the support groups? 

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Re: 35 newly diagnosed BC grade 2 ER+

Hi Shablah,

 

im 3.5 weeks further down that you, only had an initial diagnosis and told I was grade 2 and nothing else ( they didn’t have the full report). Waiting is the hardest part! I found a lump and it was <2cm and MRI was clear so had a lumpectomy last week, and recovering well. I’ll find out This Friday what my treatment is depending on the post surgery results. Don’t google things and just hang tight, you’re being dealt with quickly which is great! I had my surgery at Guys Hospital and was very well looked after. I’m not sure your age but if you’re under 45 (I’m 35) there is a group on Facebook for “young” BC patients. Lots of support here and in breastcancer.org.

 

im also based south x

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Re: 35 newly diagnosed BC grade 2 ER+

Hi Sandpiper

 

Thank you for the info. Wishing you well and hope you are back on your feet soon X 

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Re: 35 newly diagnosed BC grade 2 ER+

Hi Shablah,

There is a Primary Breast Cancer Support Group at Kings College Hospital, Denmark Hill. SE5 on 1st Tuesday of the month. 2-4pm.

Contact Macmillan Centre there on 0203 299 5228. M-F 9am-4pm for details.

It's a bit far for me to get to  as I am still tired out by treatment. I've been told it's open to all. I have just finished my active treatment, ending with Radiotherapy late October. I remember I had my pre-op assessment around three weeks before surgery so think that is normal. 

There is also a Support Group for anyone with Secondary Breast Cancer there 1st Tuesday month. 10.30-12noon.

Wishing you all well. Just keep on going.

Sandpiper x

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Re: 35 newly diagnosed BC grade 2 ER+

Thank you so much for your reply. I wish you well for your surgery today. Is anyone here being treated at Guys Hospital in London like me? I'd really like to meet up with someone or attend a support group or something. I sent an email to the cancer support service there, they gave me some breast cancer support groups in North London and Kent. Too far for me to cope with the travelling at the moment. I'm in South London. Any advice gratefully received. Thank you 

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Re: 35 newly diagnosed BC grade 2 ER+

Hi Jem,

 

try not to think too far ahead, things can and do change. It’s so hard not being able to make plans, but I find it harder deciding something and then having things change. I’m ER/PR + and HER2 - (I’m 43 so a bit older than you) and was originally having just a lumpectomy, but after an MRI found I had two areas of cancer I’m now having a single mastectomy. The good thing about this is that I may not need radiotherapy, depending on results of the surgery.

 

sarah 

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Re: 35 newly diagnosed BC grade 2 ER+

Hi Shablah,

 

I am a month further down the line to you. I was diagnosed on November 8th, also grade 2, slow growing (I’m ER/PR + and HER2 -). I did find out the full pathology at my diagnosis, but sometimes it takes the labs a bit longer and sometimes they need to do extra tests to confirm. I am in for surgery today, I’ve had an MRI and a couple of meetings with my surgeon in the interim, so it all sounds pretty standard for you.

 

i found the initial wait by far the hardest, it really does get easier to cope with when you have more info.

 

good luck

sarah

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Re: 35 newly diagnosed BC grade 2 ER+

I'm sorry to but in here but I don't know how to start a new conversation here. I am in total shock having been diagnosed last Friday. They didn't have all my results at the hospital but what they have told me is I have grade 2 slow growing lump. They couldn't tell me about the hormones stuff or the stage yet, is this normal? Anyone else been told this info before. I'm totally she'll shocked and I think my whole immune system has collapsed. I feel like I have flu. Also I have a pre op check tomorrow but surgery is scheduled for the 30th. Does that sound right? Again sorry for butting in here I'd be grateful for some advice if possible. Thank you so much 

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Re: 35 newly diagnosed BC grade 2 ER+

Hi Jemma,

 

I was diagnosed with Invasive ductal carcinoma Stage 2 Grade 3 in November 2018 which was triple positive, after finding a lump myself.I was 49 at the time so not yet eligible for BreastCheck.

 

My treatment plan was 4 rounds of A/C followed by 4 rounds of taxol - 2 weeks apart - I am based in Ireland. The herceptin was added in when I started the taxol but was every three weeks for one year.The chemo was hard particularly the A/C but I knew that the tumour was shrinking so it made things a little easier.

 

The surgery was 4 weeks after the chemo finished.I went in as a day patient arrived at 9am and leaving by 4pm results two weeks later.I had a complete pathological response so final stage was the radiation therapy.Radiation I had 25 sessions and 8 booster sessions.

 

I have two herceptin injections left and will have finished active treatment in January.

 

My advice don't think too far ahead in terms of treatment take and research each stage of treatment as it is coming up. While you sometimes feel a bit helpless you can take control of your diet and exercise and this made me feel that I was doing something to help myself.

 

Good luck and remember everything passes, so make plans for things you want to do - fun stuff - and aim for that .

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Re: 35 newly diagnosed BC grade 2 ER+

Hi Jem,

 

I hope you are coping well. Good luck on Tuesday. I agree with Shi about writing down questions, I have a notepad on my phone so I can write questions. When I was going for surgery it literally had written on the wall if you need a sick note tell your surgeon before surgery. I was staring at that note on the wall for about an hour but when I seen my surgeon I completely forgot to ask for the sick note. It wasn't until I seen her a few days later I remembered.

 

I was diagnosed in september, I have her2- er+ grade 3 I also had 2 lymph nodes affected.

When I was told I have cancer they told me i would need to have a full mastectomy as the skin around my cancer was affected. I was told i would be able to get immediate reconstruction with skin and fat being taken from my tummy or delayed reconstruction. After looking into both options I decided for a simple mastectomy as I didn't want additional surgery elsewhere. I was then offered the choice to speak to the breast reconstruction surgeon, I decided to go and see what she said but was still quite set on a mastectomy.

She told me that although some skin was affected most was fine and she could do a skin sparing mastectomy with an implant, only removing the skin that was affected. I was surprised that that was an option as I wasn't offered it before. My advice is defo speak to a breast reconstruction surgeon before making a decision, it was the best thing I did.

The reason I decided to go ahead with reconstruction instead of the mastectomy was because I might need my other breast done in future. My sister pointed out that although I don't mind only having one boob I don't know how I'd cope having both removed.

I'm now 3 weeks post op. It was quite a quick recovery for me, I got home the next day and after a week I stopped taking the painkillers. I'm now waiting to heal before starting chemo, ill also get radiotherapy then I'll be on hormone tablets.

 

Good luck in your journey.

 

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Re: 35 newly diagnosed BC grade 2 ER+

Jemmalou ❤️ You are an inspiring woman too ❤️ Remind everyone you meet to check and be vigilant spread the word, tell people to tell everyone they know too young and old ❤️ You speaking about it and telling people to check, could prompt someone or their conversation could prompt someone to check, it could save a life ❤️ 👍 💕💕Shi xx

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Re: 35 newly diagnosed BC grade 2 ER+

Hope all went well in surgery today for you, it’s a scary process but I now know that your never alone! You really are in the best hands and completely agree that the waiting is the hardest part, I hate the unknown. But with this huge support network we can do it! Xxx

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Re: 35 newly diagnosed BC grade 2 ER+

Ladies you don’t realised how much your positives attitudes have help me, reading these comments make me feel like am really not alone in the process. Lefteye84 your experience sounds a lot like what mine is going to be like, you sound so strong and defo need to concentrate on the smaller steps and not the leaps! Fingers crossed for you last bout of chemo is manageable I will be thinking of you! Sending lots of love and huge hugs to you all, you are all truly inspiring women! X 🤗😘 X

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Re: 35 newly diagnosed BC grade 2 ER+

Hi Divadelph, glad to have helped you.  It’s lovely to read this and I hope you continue to do well and of course you never face this alone now you’ve found this forum. Xx

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Re: 35 newly diagnosed BC grade 2 ER+

Hi jemmalou101, 

 

Sorry to read your post, it’s devastating and certainly nothing you expect at the age you are. 

I was diagnosed with invasive ductal carcinoma grade 2 HER2+ and oestrogen pos in August at age 34. I too have 3 kids, 1 is older and 2 younger ones. 
When I was told my results they explained the plan, chemo first then surgery and the. Whatever is necessary after that. I questioned chemo first as my initial reaction was to get the sodden lump out and the surgeon did say it was my choice but that was what they recommended. 
Anyway, I decided to go with what they recommended and I started chemo in sept. I am now 5 cycles down and due my last one 6 days before Christmas. (Although I have a bit extra to get due to a drug reacting in the bag and infusion being stopped). A CT scan picked up an enlarged lymph node which unfortunately turned out to be cancerous too, along with a 2nd lump in my breast that I never knew about. The extra lumps and bumps didn’t change my treatment, it only changes the surgery. So I am due to have a mastectomy and lymph node clearance in feb.  
Because of my age and prob also the type I have, I will be starting monthly zoladex injections in the next week or so and that is to put me into an early menopause, as my cancer is hormonal. I don’t know yet if I will get radiotherapy at the end that has still to be discussed. 
it is a total mine field and the amount of info u get is totally overwhelming. 
I was struggling a bit with the amount they throw at you, got to the point I didn’t know if I could keep on doing it, but after sitting and thinking about it, I remembered just to take baby steps. Don’t focus on the things that are weeks away, only focus on the things that are imminent. Now feeling a whole lot better and ready to tackle it head on again. 
I’m not sure if any of that helps, but it’s sometimes nice to know your not alone 😘

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Re: 35 newly diagnosed BC grade 2 ER+

Hi Jem

I was diagnosed nearly 3 weeks ago and I totally understand how it rocks your world, I was totally petrified for the first few days and Shi & Mai7 were amazing on the forum....I also found it really helpful to spk to breast nurses on here, It also reallt helped to use the "someone like me" service, it gives great comfort to hear other people's stories and to know that it will be ok, whatever your journey looks likeHeartHeart

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Re: 35 newly diagnosed BC grade 2 ER+

Hi Jemmalou,

 

Your oncologist is quite right re the lumpectomy and breast conservation surgery. Studies indicate that for some of the most common bc's lumpectomy plus radiotherapy to the breast has just as good an outcome as mastectomy. You might want to ask your oncologist if that is the case for you when your full diagnosis is known. 

 

I found the treatment teams really good, surgery neat etc. I was in my early 40's when diagnosed, now 5 years on and doing ok, just like to post since I got so much from the forum when I was diagnosed.

 

The phone line (number at top right hand side) can also be helpful, to speak to a nurse and run through your thoughts etc. 

 

Wishing you well with your bc journey.

Be kind and compassionate to yourself and take one day at a time.

 

xxx Seabreeze    

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Re: 35 newly diagnosed BC grade 2 ER+

Thought I’d say hey, I’m also 35 and diagnosed 2 weeks ago with grade 2 Hormone positive. I’m her2 -ve and having a lumpectomy tomorrow. The waiting is the hardest part but you’re in the best hands and every outcome has a solution, so don’t worry yourself sick. Let us know how you get on? 

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Re: 35 newly diagnosed BC grade 2 ER+

Jem so sorry you find yourself on here. It is a lot to take in all at once. You will find your feet. Please use the ask the nurse facility on here and also the someone like me option. Importantly you remember you are in control, even if it doesn’t feel like it. Have a look through the threads too, lots of ❤️And from everyone here always, so know you are part of a very strong chain 👭👭👭. Get a note pad and write things down and have questions ready also you should have been assigned a bc nurse at diagnosis, please ring them, they are there to give you support, guidance and help too. Hope this helps a bit 💕💕Shi xx

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35 newly diagnosed BC grade 2 ER+

This is such a scary post, being diagnosed completely took me by surprise. I was seen yesterday by my breast consultant who confirmed grade 2 invasive ductal ER+, still waiting for HER2 results won’t know that till next Tuesday 10th. Talked about treatment plan and this depends on the HER2 results (chemo 1st to shrink it and then surgery or just surgery) but wanted to know if anyone is in the same boat? 

I have 3 young children (9.7,3) and a very supportive husband but struggling to get my head around this. 

Yesterday my consultant was explaining to me all the different treatments / surgery’s and my head was just blown 🤯   The different types of reconstruction (breast conserving surgery or complete mastectomy) my initial reaction was to have it removed as soon as possible and take everything (consultant said very common) but advised me to think about the options... and not to make a rush decision! Both would need chemo and radio afterwards and hormone tablets.

help! Ladies / gentlemen in similar position, how did you make the decision??? 

jem x