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Just diagnosed with hormonal breast cancer

61 REPLIES
Community Champion

Re: Just diagnosed with hormonal breast cancer

Marla, I just found your post on Club Tropicana thread and replied! Hope you are doing well. xx

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Community Champion

Re: Just diagnosed with hormonal breast cancer

Hi Clairebear, it won't change from *grade* 2 as that is your "type" - it's what your body made.  The *staging* is the bit that can change but it happens slower than our minds think.  That is the hard thing to get your head around and reassurance doesn't always help when the negative committee in your head won't shut up.  I imaged every cell in my body changing with every breath in and every heart beat but that's just the journey of the mind of course, not a reality.  I found keeping my mind distracted and busy was effective.  I got busy on nutrition which is a positive distraction rather than a negative distraction. You have to work through a lot of emotions before you find peace of mind and that is ongoing.  xxxx

Member

Re: Just diagnosed with hormonal breast cancer

Hi hopeful...i have been the same regarding the “it had spread” senario....I keep feeling tingling in my bum and back of my thighs...then burning or pains under my armpits...then tingling in the back of my neck (iv had this neck tingling since I had my baby)....I’m convincing myself I have it in my bones and brain 🙈🙈🤣...us anxiety sufferers genuinely do make a mountain out of a mole hill and I think because now after diagnosis we are so in tune with our bodies we notice every little thing!
My consultant reassured me the other day that it won’t spread or change from grade 2 within the next 3 weeks before my treatment starts and even said about over dramatising every little pain or tingle...Xx
Member

Re: Just diagnosed with hormonal breast cancer

Hi Hopeful,

 

I know it's irritating, but just attach an innocuous (innocent) explanation to it, as opposed to a "threatening/danger" explanation to it. It's interesting because I work with a lot of panic sufferers and health anxiety patients and what we know about these problems is that the pain is real-the problem is the meaning you attach to it.

 

Immediately following my own BC diagnosis, I was noticing every little pain (in my back, breast/chest area) and trust me when I say that I had to do some hard core CBT on myself, i.e., "don't be ridiculous Marla-they've reassured you that it has not spread". 

 

It *is* important to gain confirmation of the facts of your own particular case, i.e., has it spread, and if yes, where to, etc. If you've not had that confirmed yet (I can't recall which scans you've had and what they've told you), then yes, the waiting and uncertainty can really cause you to jump to the worst conclusions. 

 

For the sake of your own mental health though, until you have good reason to believe it has spread, i.e., doctors tell you it has....please assume it hasn't. I know-easier said than done. Smiley Happy. We're all here for you!  

xxx  

Member

Re: Just diagnosed with hormonal breast cancer

Yeah she said the same thing it might be my mind playing tricks on me it’s just so irritating that I suddenly get this pain. Thank you Marla I’m going to try and not panic x
Community Champion

Re: Just diagnosed with hormonal breast cancer

Good advice below.

 

Did the bcn ring back ?

Member

Re: Just diagnosed with hormonal breast cancer

Hi Hopeful,

 

Don't panic! Smiley Happy. It's all very normal what you feel, and then what you think. I'm a CBT therapist when I'm not a breast cancer patient and what you're doing is called catastrophizing....thinking the pain near your armpit means it has spread. It's very normal to be hyper-alert to twinges and pains.....these things you may not have paid much attention to pre-cancer diagnosis but now that you have this diagnosis, you are imagining everything is linked, and in all likelihood it isn't. Try and stop yourself from jumping to the worst conclusions by seeking out evidence....if you have no evidence from your medical team that it has spread then assume it hasn't. We have so much to deal with, with what *is* true, that we don't need to make ourselves crazy over what isn't true. Again, it's perfectly normal to feel these pains but don't let your thoughts go down the catastrophe route, i.e., by attaching a "danger" meaning to the symptoms.

xxxx

Member

Re: Just diagnosed with hormonal breast cancer

I had another panic today I have woken up with pain near my armpit I panic and called my nurse I am so scared it’s starting to spread to my glands now! I just want my treatment to start now so I know it’s being treated and hopefully being killed. X
Member

Re: Just diagnosed with hormonal breast cancer

I looked up the Facebook group I’m just waiting for my request to be excepted x
Member

Re: Just diagnosed with hormonal breast cancer

thank you Maria, I hope your treatment is going well and that you lr doing well. I must admit ones the chemo starts I think I will fill more relaxed because I no I will be one step closer to saying bye to this horrible thing. X
Member

Re: Just diagnosed with hormonal breast cancer

Clairebear and Hopeful....it's great that you have each other to go through the journey with and good that you have much in common too. I have spoken to many women who used to cold cap and most say it's tolerable. It sounds like you are both in good hands....I'm sending much love and healing vibes to both of you.

xxxx

Member

Re: Just diagnosed with hormonal breast cancer

Yes I was crapping myself waiting on them results I’m.l not going to lie..lol but luckily I had them done the next day after diagnosis so I had all the stress and shock in the same week!!
Aww bless ya, it’s so over whelming isn’t it but iv been told numerous amounts of time because, I’m anxious Annie over here, that once all the treatment and that is in place it’s easier to focus on and start the count down until it’s all over with.
Having you to talk to and hear that your emotions and anxiety is the same as mine helps me out aswell 🤣🙏🏼 Yeah look it up it’s so good! Xx
Member

Re: Just diagnosed with hormonal breast cancer

Luckily I suffer from migraines well not luckily but I’m use to them so I though I would give it go if I can’t bare then I will stop but I though I might as well give it a go. No I haven’t heard of that group I might look it up. Did you get anxious with your other scans I’m now **bleep**ting myself thinking what in case they find something else. I don’t think I can take anymore stress especially with the waiting for the results of these scans! I also got a phone call asking for me to go see the chemo nurses next week starting to feel a bit to real now x
Member

Re: Just diagnosed with hormonal breast cancer

Hi Clairbear85,

 

I'm somewhere in the middleSmiley Happy. Diagnosed in August with Invasive Ductal with lobular features-Grade 2, ER +, Her2 -. I was planning for a mastectomy for next week but had some strong doubts about the op and having spoken to a Macmillan nurse for an hour last week, decided that it's not my time for the op. Saw my surgeon the following day and she agreed. I'm safe to give the hormone therapy Letrozole a go at shrinking the cancer and seeing then, what my options are. I may not be able to avoid mastectomy down the road if the cancer does not shrink the way we want it to (it's 5cm) but I want to give the Letrozole a chance before having a mastectomy. Unlike many women, having the cancer in me does not scare me or worry me. My consultant as well as a second opinion consultant at the Royal Marsden have both reassured me that whilst on Letrozole I am not putting myself a risk-the Letrozole will stop the cancer from growing and will then start to shrink it. So it's a wait and see game. I see my consultant in 2 weeks for a physical exam (just to check) and an MRI in 3 months to see how I am responding to Letrozole.

xxxx

Member

Re: Just diagnosed with hormonal breast cancer

Marla13- have you finished treatment or are you at the beginning of the road like myself and Hopeful86?
Xx
Member

Re: Just diagnosed with hormonal breast cancer

Hopeful86...that’s great I’m glad you feel reassured, my consultant kept using the curable word aswell and said he is confident it will be cured he even gave me statistics based on my Tumor and the treatment and even without perjeta aswell as herceptin I’m at 91% 10yr survival that made me feel good 🙂...have you joined the Facebook group HER2 positive? I am in the group and it’s so good...asking questions and speaking to other women who are the same as us and have beat it.
Iv been told it’s very painful cold capping like having a migraine and brain freeze in one lol 🙈 xx
Member

Re: Just diagnosed with hormonal breast cancer

I'm really pleased for you Clairebear85-you sound positive and in good spirits re-the chemo and I agree, at each session you will enjoy the feeling of knowing you're saying "bye-bye" to the cancer. 

xxxx

Member

Re: Just diagnosed with hormonal breast cancer

I no it is very strange. My oncologist was actually great (can’t believe I’m saying that) but I came out really reassured and he said the words curable not treatable and said the it’s actually quite small. The reason I’m having chemo first is because the lump is so close to my nipple so if they where going to operate first I would lose my nipple.. I will be starting chemo in 10days or less 6 cycles one very 3 weeks. 😱 I am going to have scans so a bone scan and a chest scan.he said nothing to worry about he very much doubts anything is there he just has got to do it. We talked about cold capping he thinks I should I give it a go but to cut my hair short first so it works better. But I came out of that appointment feeing so reassured and actually a lot less stressed which was very odd. And being able to tell my family it is curable lovely. Now all I got to do is keep my anxiety in check for the scans fat chance that is going to happen but just got to remember to breathe x
Member

Re: Just diagnosed with hormonal breast cancer

Marla13...yes mine is hormonal and I decided to go with treatment first as I’m not going to escape chemotherapy so I might aswell get it over with, and I think I’m going to enjoy the fact of watching it die every chemo treatment x
Member

Re: Just diagnosed with hormonal breast cancer

Hopeful86....I’m Thankyou, and it was abit more reassuring this evening to know it’s not going to spread by the time my treatment starts and it is confined to my breast atm..🙏🏼...my anxiety is a beast also! I walk around and forget about it then get smacked in the face with reality and remember the journey I’m about to take!
It’s so strange how talking to you is like talking to myself..you seem to be thinking and experiencing the same emotions and traits that I am and we both have older children aswell as young babies...I genuinely thought I was the only one like us in this situation 🙈...how was your oncologist appt today?? I am seeing mine next Wednesday.
I did steer away from microblading as I don’t want the risk of infection before chemo as it would delay the treatment start. I haven’t told my older children as I can’t bring myself too do it, I’m just going to start wearing hats and gradually cut my hair shorter so it doesn’t come as a shock to see me without hair 😕. It’s an awkward situation for children isn’t it xxx
Member

Re: Just diagnosed with hormonal breast cancer

Hi ladies,

 

For what it's worth, I believe that some surgeons recommend chemo (or hormone therapy) first, because this gives you the best chance of having a lumpectomy (as opposed to mastectomy)-the cancer will shrink, whether you have chemo or hormone therapy. I think for Estrogen + cancers, the hormone therapies do what chemo does for non estrogen + cancers. I happen to have ER + and Her2 - Invasive Ductal with lobular features and my surgeon actually explained that the hormone therapy is more important in saving me, than the surgery. The hormone therapy stops the cancer from growing (surgery removes the existing cancer but does not stop cancer cells from growing) and so I made the decision to defer surgery and see how much my cancer shrinks from the hormone therapy. Again and to reiterate: you may have a different type of cancer to me, but for hormone sensitive cancer, it is not unusual to first start with hormone treatment, and so my best guess is that this is the same for non-hormone type cancers (Estrogen - cancers) and chemo.

 

I'm not a doctor though but this is what I'm thinking. 

xxxx 

Member

Re: Just diagnosed with hormonal breast cancer

Hi Clair, how was your appointment today?
Member

Re: Just diagnosed with hormonal breast cancer

Oh with microblading you can get the base but you can’t get the 6 week top due to risk of infection. But by the looks of it it helps to give a you a base when going through the treatment.
Jess x
Member

Re: Just diagnosed with hormonal breast cancer

yeah I am quite shocked they haven’t done a full scan but I hope that just means they are pretty certain it hasn’t spread. I spoke to quite a few beauty therapist and they said quite a lot of women have it done before chemo starts. All they have asked that I get a letter of consent from my doctor. I definitely agree losing hair is nothing compared to saving my life. I have decided to cut my hair short and try cold capping as well. Even though my 7 year old really wants me to lose my hair so I can get a rainbow wig 🤦‍♀️ The joys of younger children not understanding. I’m being treated at St Margaret’s in Epping and meeting my oncologist tomorrow morning to get a treatment plan in place and have a look at the chemo suit. How are you feeling in yourself? I keep forgetting I have had it then I remember and then I’m hit with an anxiety attack then I repeat to myself that I will be fine and that it will suck for a year but everything will go back to normal. It’s hard but we just have to try and stay positive x
Member

Re: Just diagnosed with hormonal breast cancer

Thankyou jill1998 I will contact one of them x
Member

Re: Just diagnosed with hormonal breast cancer

Hopeful86...Oh really? I had my mri done the same day as diagnosis and pet/ct scan the next day to see if it had spread anywhere else. I haven’t got a start date for treatment yet as I’m meeting my consultant tomorrow evening to finalise my choice of treatment. Can you have microblading done before chemotherapy?
I feel the same way regarding the hair loss but am starting to come to terms with the fact it’s a small price to pay to save my life but am super anxious as my hair is right down to my butt so am debating having it cut short so my older kids get used to seeing it short before I lose it all...I was also told by my consultant and care nurse about cold caps which helps minimise hair loss.
I am being treated in Basildon Essex England. Where are you? X
Member

Re: Just diagnosed with hormonal breast cancer

I have had a mammogram and ultrasound and biopsy they haven’t mentioned anything about other scans I’m having clip inserted next week. I’m meeting my oncologist tomorrow so I’m sure they will mention other stuff to me along with a start date for chemo even though going by the dates that should start within In the next 2 weeks. I have an appointment to get my microblading done on the weekend I no it sounds vain but I want to minimise the hairl loss as much as I can so I look normal as much as I can If that makes sense? Where are you being treated?
Member

Re: Just diagnosed with hormonal breast cancer

It is very hard especially when the decisions are in our hands. I said exactly the same as you cut the whole thing off lol...he said he would If that is what I wanted but strongly recommends his drug route first. I have no lymph nodes involved either.
Did you have scan, biopsie, mammogram, pet/ct and mri?
Are you having perjeta herceptin and chemo then surgery and radiotherapy and hormone tablets?
No I’m not too sure yet poss in the next 3 weeks.
Community Champion

Re: Just diagnosed with hormonal breast cancer

Community Champion

Re: Just diagnosed with hormonal breast cancer

Hello ladies- it might be worth asking in the Ask the Nurses section about the surgery first /chemo question - they may be able to explain the reasoning - can totally understand how you feel - I would be the same but there must be a very good medical argument for doing it this way round ??
Member

Re: Just diagnosed with hormonal breast cancer

Your sister is so right. I have grade 2 invasive ductal but my lymph nodes are fine. I was diagnosed last week and when they said they where going to do chemo first I said take the breast I don’t need it if it’s going to do this to me. And they said no. They would rather try and shrink it first or just try and get rid of it all together then surgery to get rid of the remaining tissue. I’m going with they see this all the time so they no what they are doing. So I just have to trust them. But it is hard. I’m 32 so I no it is such a shock especially at our ages we just don’t expect it considering we don’t even qualify for the monograms to check for it. Do you no when your going to start chemo? X
Member

Re: Just diagnosed with hormonal breast cancer

Hopeful86,
You sound so similar to me and my situation it’s strange..when I called my care nurse back and said I’m opting for surgery there was a long pause on the phone which then had me thinking 🤔....my sister also explained to me that it could be like pulling a weed out and not getting all the roots and then they pop up elsewhere! Where as the herceptin, perjeta and chemo will go in a blast the mofo out lol xxx
Member

Re: Just diagnosed with hormonal breast cancer

Hi Clair,
My doctor has told me to have chemo first followed my surgery and radiotherapy then tablets for 10 years. I am the same as you and thinking why aren’t you taking it first surely that is the best thing to do? But they have reassured me that it will not spread while I’m waiting for chemo to start. And the only reason they want to do chemo first is because they want to minimise my surgery as much as possible so they want to shrink it first. I have also got very young children the youngest being 5 months. And I’m scared everyday for them. But I’m also trying to be positive that this is just a blip in the road and it will get better. I know anxiety is a bleep and it takes over but please try and trust you care team they are honestly doing the best for you x
Member

Re: Just diagnosed with hormonal breast cancer

 
Member

Re: Just diagnosed with hormonal breast cancer

Hi ya, I went for my follow up appointment the consultant said he’d recommend I have chemo, herceptin and perjeta then radiotherapy, surgery and hormone tablets for 10 years but I’m going to request the surgery first then chemo, herceptin, radiotherapy and hormone tablets cos I just want it out of me while it’s only contained to my boob xx
Member

Re: Just diagnosed with hormonal breast cancer

hi bazzies thank you for sharing..at the moment im more of standard tx having my situation with my boy and having young family.i only wanted treatment that will give me the best chance that cancer will not comeback.
Member

Re: Just diagnosed with hormonal breast cancer

Hi Michelle thank you for sharing.im still undecided as of now.x
Member

Re: Just diagnosed with hormonal breast cancer

thank you.
Member

Re: Just diagnosed with hormonal breast cancer

The Optima trial now looks like there has to be node involvement. From reading the posts if HER pos chemo first treatment to shrink tumour? Also the Optima is if HER -. Goodluck with your journey keep in touch x
Member

Re: Just diagnosed with hormonal breast cancer

Hi
I had my scan results back and their all clear, I don’t have any lymph nodes involved I just have the one lump and a small one next to it that isn’t a concern.
I was adamant that I wanted surgery first to remove it but My consultant has advised he’d like me to have chemo first...I know I will be having herceptin and hormone blockers but I’m not sure wether to go straight in with chemo.
I don’t know about this optima trial??
Member

Re: Just diagnosed with hormonal breast cancer

Hi Maz74

 

I also had the same diagnosis as you just over a year ago. Like bazzies I joined the Optima trial & my tumour was tested and the results showed I didn't need chemotherapy.

 

I have just had my first mammogram and annual check with the surgeon and received the all clear

 

Michele

Member

Re: Just diagnosed with hormonal breast cancer

Hi Maz74

 

Just saw your post and my Bc is same oestrogen positive nodes involved stage 2 HER negative, ive had mx and lymph clearance with recon I’m now  6 wks post op.  I was offered the Optima trial which I agreed to.  I will now be going straight to rads and hormone therapy.  fingers crossed I made the right decision all we can do is go with  the information we are given and then make our choices.  As I keep saying to myself unfortunately none of us would choose to be taking this journey......in life there are no guarantees.  I’m quite fortunate in that my children are grown up, I have 11 grandchildren that I would like to enjoy.  Fingers crossed your journey is as smooth as possible, keep in touch x x 

 

bazzies

Member

Re: Just diagnosed with hormonal breast cancer

Hello,im new here too.Iv been diagnosed Stage 2,estrogen positive and HER2 negative...had surgery and postive on lymph nodes.Im feeling the same scared that wont see my two girls and my special needs son future.waiting to see oncologist and im dreading to think im having chemo? does anybody of you offered clinical trials?
Community Champion

Re: Just diagnosed with hormonal breast cancer

Hi Clairbear and HaylsLou,  I too was invasive ductal hormone positive, 90mm diffuse tumour, 9/12 lymph nodes affected and here I am still here after 8 rounds of chemo, surgery and radiotherapy.  I just want you to know you can get through this.  Its mentally very hard on you and your mind spirals out of control in the early days but it gets easier.  If you have a read of my blog, you'll see you are not alone with your thoughts and feelings, you might find a few useful tips in there too:  http://lifeafterlola.com

Once your treatment plan is in place, you can chat with others going through the same on the "going through treatment" thread.  I found this really helpful and still keep in touch with my chemo buddies.  xx

Member

Re: Just diagnosed with hormonal breast cancer

Hi Clairbear
I’ve recently been diagnosed with invasive ductal carcinoma oestrogen positive, I’m 34 with 3yr old twin daughters. I’ve been losing the plot tbh, I’ve lost weight with worry, been put on sleeping tablets and beta blockers but nothing seems to be helping. I have aches all over so have obviously convinced myself the cancer has spread everywhere. Today I’ve decided it’s my brain. Yesterday it was my liver! I just wanted to message to say you’re definitely not alone but also thank you for your original post as even reading someone is feeling similar has helped me. Lots of love and strength xxx
Member

Re: Just diagnosed with hormonal breast cancer

Hi Clairbear

 

It's Emily here from Breast Cancer Care.

 

I just wanted to let you know that we have volunteers who have had a similar experience to yours, who'd be happy to talk to you too if this would be helpful. 

 

One of them is Karen (her profile is here) who can be contacted by email: karen@breastcancercare.org.uk. 

 

Or we can put you in touch with someone by phone. Feel free to drop me a private message on the forum if you think this would be helpful.

 

Best wishes in the meantime.

Emily at Breast Cancer Care 

Community Champion

Re: Just diagnosed with hormonal breast cancer

Hi Clairebear, 

I see you have had some lovely support already from our ladies, you are never alone on this forum 😊 

Its an awful shock to be diagnosed and especially at your age with such a young family but we are seeing this more and more so you will certainly come across ladies here going through the same. 

 

These early days are pretty brutal, and what you are describing is completely normal but I assure you It does settle down. The shakes, the anxiety, the gut wrenching fear that you won't survive this, not sleeping or eating the list is endless!

 

You are in shock and our brains don't know how to deal with so much uncertainty, answers are the key and over the coming weeks that is what will help you settle and come to terms with things, once you have a definite treatment plan and know the way forward you will start to feel better 😊

 

I completely understand your fears after losing a friend to BC, My mum died from it and a few weeks before my diagnosis we buried a close friend of mine who had BC but died from Ovarian, my brain was fried! 

 

But you soon learn that you cant compare yourself, we all respond differently and thankfully the majority of us go on to be just fine after treatment, I was diagnosed in March 2015 at 46 and am doing great now. 

 

One thing for certain is no amount of stress and panic will change things, if I could go back and tell my newly diagnosed self anything it would be that, You will cope with things it just takes time Xx Jo 

 

Member

Re: Just diagnosed with hormonal breast cancer

Hi Clairbear

How are you doing?

I'm 37 with a 20 month old and was diagnosed on 18th sep with grade 2, invasive ductal carcinoma, oestrogen positive but her2 negative.

Those first 2 weeks after diagnosis are the absolute worse, but once you get your team and plan in place things are so much easier. The waiting around for scans and results is a nightmare, the fear of the unknown.

I now have surgery booked for the 12th November, then will have radiotherpy and hormone treatment for 10+ years, at the moment, looks like I'll be lucky enough to escape chemo.

The appointments will start coming through thick and fast, I found it best just to focus on next appointment rather than think too far ahead. I'm now feeling really positive and looking forward to seeing my wee boy grow up. As a mum of three, the kids will really keep you going.

I was expecting to be the youngest in all the clinic waiting rooms but that's certainly not the case, I've already made some firm friends. There's a great Facebook group too, I can share the info if you like, ladies at all ages and stages who are a great support and answer all my daft questions.

My only other experience of bc is my mum, she was diagnosed July 2010, had chemo, surgery and radiotherapy, given all clear in March 11, but diagnosed with secondaries in her liver and died in Aug 11. Hard for me not to compare but have come to realisation that no two people, diagnoses, reaction to treatment etc are the same. I will beat this and so will you!! Xx
Member

Re: Just diagnosed with hormonal breast cancer

Thankyou all for posting with your advice, I really hate that this has happened to all of us and hate feeling like my life is on a knifes edge ☹️...I just really want my treatment to start so I know it’s under way.
I do have a huge support network for all of you guys and all of my family and my husband and he’s family but I just feel so crap and scared at the minute. I’m trying to put on a brave face cos I don’t want my kids to see anything yet as I’m not sure when to tell them, I do t want them upset or scared and am just praying I come out of this the other side and get my life back ♥️🙏🏼
Member

Re: Just diagnosed with hormonal breast cancer

waiting for results is a killer. I was recalled after my MRI of other breast and then had to wait for biopsy and CT results. Got myself into a right state about the CT results, but they were fine after all that. I'm the opposite, I eat chocolate when stressed and am trying not to put back on the 4 stone I lost with alot of effort last year!