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Newly diagnosed breast cancer awaiting further tests

2 May 2021 12:33

Hi all,

I have posted in other places on the forum but this seems like the most appropriate place now I have been diagnosed. It will also be helpful for me to type out my story and appreciate it if anyone reads this. 
 

I'm 36 and had a baby in December 2020. I had difficulties breast feeding and noticed a lump in my left breast. I was told repeatedly it was a blocked milk duct and given massages/ pumping advice. I phoned the GP as they said they didn't need to see me and could give me antibiotics, I did ask if I could come in and be seen. They saw me, said the lump moved and it was a blocked duct most likely and I was given antibiotics. I went back a few weeks later as the antibiotics did nothing. 
Another GP examined me and said they weren't satisfied it was a blocked duct and referred me for a scan. I had an untrasound a few weeks later and the lady said it looked like a lactational adenoma and said it was benign and to come for a biopsy 6 weeks after I'd stopped breast feeding.

I got a call a few weeks later saying a Dr requested I gave the biopsy now. I had it and was told again not to worry and it looked like a lactational adenoma.

So I went back Friday for my results and was told I have cancer. The Dr said it was small and said it was an inch (which seems big to me). They told me I'll need chemotherapy which will start in about 4 weeks time. I had an MRI when I was there and have to go back Wednesday. From what I remember (it was a bit of a blur) they are going to put a clip in me and I'll have lymph nodes taken from under my arm. They said it tested positive for eostrogen and HER2. They have also recommended genetic testing due to my age and the HER2. My mum has also had breast cancer in both sides but had it in her 60s.
 

Everything seems very strange at the moment, I was due back to work the end of this month after maternity leave. I'm also in the process of moving house. Have felt a bit numb which I know is the shock. Just trying to keep busy before Wednesday. 

I don't really know what anything means at the moment or what to expect. Has anyone had /experienced anything similar?

 

Newly diagnosed breast cancer awaiting further tests

2 May 2021 15:04 in response to rmscj

Hi 

I didn't want to read and not respond. I am not in exactly the same situation. I had a biopsy on a lump two weeks ago and go back for my results this coming Wed. I have been told that due to how the lump is 'presenting itself' the likelihood is it's cancerous. It's 33mm in size apparently. 
I wasn't expecting this at all. I had convinced myself that I would be one of the 8 people tested that would be in the clear! When the nurse examined me at the one-stop breast clinic initially,  she said that what she was feeling was more than likely cysts, that it felt totally benign and that she didn't think I had anything to worry about. I really wish she hadn't used some of the words she did! It really gave me a false sense of security. The mammogram and ultrasound showed something very different. 
I have been in a total daze since then. The waiting is awful - as so many people say on here. I have two teenage sons and although I've not mentioned anything to them yet and have managed pretty well in holding it together in front of them, I'm so fearful of the potential journey ahead. 
I'm sorry I can't offer more specific support to you and your situation right now. It sounds like you are holding things together so well. Such a lot going on for you with baby and house move. This like you say, is keeping you busy.  I'm trying to do the same. Just wanted to reach out and send some love your way. 
Sarah xx 

Newly diagnosed breast cancer awaiting further tests

2 May 2021 17:28 in response to rmscj

Sorry to read your story, it is very tricky for anyone receiving this news but with a new baby too I dare say you are all over the place.

what I can say is, everyone's journey is different, but there are amazing teams to support you all the way. The clip is possibly a marker, some receive treatment pre-op and so they need to know where the cancer is because the chemo will shrink it so the surgeon will use the marker to guide them.  With you being young and otherwise healthy, this should stand you in good stead and hopefully you will cope well with any side effects, for me personally, I would feel very sickly following chemo and eating little and often would help with this, also, regardless of how tired you may feel, especially with baby, getting up and having a little walk around the house or in the garden regularly following treatments does help, it isn't pleasant, but it is something you can get through, talk to your team and make sure you tell them about the niggles, honestly, they can probably help and they will be happy to do so!

Good luck to you and Sarah below, your kids are probably more resilient than you realise (my kids were 10 and 13 when I was diagnosed). XXX

Newly diagnosed breast cancer awaiting further tests

2 May 2021 18:13 in response to Cherry-Blossom

Thank you Cherry-Blossom 

It was good to read about your children. I think you are absolutely right. Far more resilient than we give them credit for ☺️ As I said, my results app is on Wed morning. As much as I am dreading it, I am far better when I know what's what. Once I know what the diagnosis/plan is I can get stuck in to sorting it out! 
 

Sarah xx 

Newly diagnosed breast cancer awaiting further tests

2 May 2021 22:51 in response to SlightlyBewildered

Thank you for your responses it's much appreciated. 
 

Sarah, sorry to hear what you are going through. The waiting is the worst part. I have just been trying to keep busy and do things for myself when I have the time. Telling people was hard but I just kept it factual and what I knew which made it a bit easier. Hopefully you will know more on Wednesday and it's good to note down any questions that you may want to ask. 
It sounds like as Cherry-Blossom mentioned everyone is supportive. 
Let us know how you get on on Wednesday. My next appointment is also Wednesday but in the afternoon so I've tried to plan things for the week.

x

 

Newly diagnosed breast cancer awaiting further tests

3 May 2021 09:38 in response to rmscj

Morning. 
 

Thank you for advice re writing any questions down. I have been told to take someone with me to the app. I'm divorced from my husband so I'm taking a bestie!  Unfortunately she was diagnosed with bc a few years ago. Thankfully she's out the other side now  She's fab and will be able to be my voice and ears if I need it. 
 

Lots of love. Sarah xx 

Newly diagnosed breast cancer awaiting further tests

3 May 2021 21:00 in response to SlightlyBewildered

That's great you have someone to take with you. These appointments are always a bit of a blur so it's good to have an extra pair of ears. I'm taking my partner this time, I wasn't told to bring anyone with me the first time which they were suprised about. I forgot almost everything aside from the major bits. I think I'll take in some notes thiss time to ask as I just couldn't think in the moment before.
It's not too far now from Wednesday so hopefully we will both have more information by then.

x

Newly diagnosed breast cancer awaiting further tests

3 May 2021 22:30 in response to rmscj

Hi

So sorry to read your story. 
I'm in a similar situation. I'm 29 and been told I've got cancer which is also positive for her2 and estrogen, they haven't discussed treatment but this weekend I've been for an MRI scan and a CT. 

I had a clip put in me at the time of the biopsy (prior to the scans), I think it's just a marker so they no where the lump is if they need to do an operation etc. 

I feel the same as you in shock... I'm a healthy 29 y/o with no breast cancer in the family. Prior to been told it was cancer 2 DRs one been a cancer surgeon told me my lump was moveable and felt benign.. again I wish they never told me that as now I question everything. 

I'm currently waiting for my results from the scans. 

Good luck with everything ❤️

Newly diagnosed breast cancer awaiting further tests

3 May 2021 23:04 in response to missdior1

Sorry to hear you are going through something similar missdior1.

The moveable comment is so strange as I had that twice as well. I completely understand the questioning everything I'm also now doing the same. 
How did you find your scans? I've had an MRI and am going to have a clip put in I think on Wednesday when I get my MRI results. 
 

Also sending luck your way x

Newly diagnosed breast cancer awaiting further tests

4 May 2021 11:09 in response to rmscj

The scans were both fine and quick, how did you find yours? 
Just as an FYI the clip they pop in is fine, it doesn't hurt (well it didn't hurt me) it's just more the noise, sounds a bit like a staple. They used an ultra sound machine on me to guide the clip in the right position. I did bruise heavily but I think this was more to do with the biopsy but apparently that's normal, it looks worse than it was. 
 

Take care 

x

 

Newly diagnosed breast cancer awaiting further tests

4 May 2021 13:06 in response to missdior1

I had an MRI but not CT scan. It wasn't too bad, I assumed it would be worse but almost easier as I was face down. Glad to hear yours were ok and quick.

That's good to know about the clip. It sounds similar to the biopsy. I also bruised a lot after the biopsy but it didn't hurt during or after. 
 

Sending well wishes your way. 

Newly diagnosed breast cancer awaiting further tests

6 May 2021 09:51 in response to rmscj

Hi Honey 

 

Thought I'd update you ... Unfortuatejy the lump is cancerous. I was pretty sure it would be so it didn't feel too devesrating to hear. If that makes sense?!?! 
 

it's a 5cm Grade 2. HER 2 Negative apparently! And hormone responsive so I will be on hormone blockers after treatment for 10yrs. I think that's what the consultant said. Both he and the nurse were great. I took a friend with me too. 
 

I thought I would come out having been bombarded with info and untold decisions to make but that wasn't the case. I feel so relieved and grateful that it's treatable. 
 

First treatment for me will be surgery in around 4 weeks time. I do have to decide this week though whether I'm going to have a lumpectomy or a masectomy (cannot actually quite believe it's me I'm taking about!) I think I'm going to go for the lumpectomy first. Although it will be a big chunk of boob, the nurse said that whenever possible they try to encourage patients to hang on to as much of their own boob/s as poss. 
 

I will then have a course of radiation. 
 

All the nasty bits and pieces removed during the op (they will take a lymph node too) will get tested. If they get the margins they need that will be it. If not I will need more taken away and deoebding on how much boob is left I may have to go down the masectomy road. But cross that bridge as n when. If anything does show up in nodes then chemo will be discussed. As yet it's not been talked about but consultant said not ruled out at this stage. 
 

Although it's a hideous situation to be in I left the clinic feeling remarkably ok. I was so relieved to know what I'm dealing with. 

How are you doing honey? Thinking of you  

 

Sarah xx 

 

Newly diagnosed breast cancer awaiting further tests

6 May 2021 10:54 in response to SlightlyBewildered

Hi Sarah,

Sorry to hear about the diagnosis, like you say I was also kind of prepared for the cancer diagnosis. It sounds like they gave you lots of information though which can make you feel a bit more in control, it's the not knowing sometimes which is worse. At least you know more or less what's next.

I had my appointment on Wednesday and took my partner. They said my MRI picked up another small lump in the same breast but they don't know what it is but it could be benign. I wa la relieved there was nothing in the other breast. As mine is HER+ and E+ I am having chemotherapy which will start in about a month. They were really nice and honest about the chemo. I've booked a haircut this weekend as unfortunately my hair is down to my waist so I'll get it into a bob first, my hairdresser was super understanding. 
 

They are going to put a clip in me next Wednesday and unltrasound under my arm and the other lump. Then they will decide if they need to biopsy the other lump or take lymph nodes. They did say my nodes looked ok on the MRI but they will know more on the biopsy. So far they are saying I'll have surgery around October/ November time. 
 

They also suggested genetic testing because of my age which I said I'd be interested in. They did speak a bit about a possible mastectomy if the other lump is cancerous. My mum has had a mastectomy so in some ways I feel I have a lot of information about that. 
 

Like you say at this stage it feels like there is much more information and just knowing what the next steps are is more helpful.

Im relieved I've told family which was the hard bit, just got to tell my work now. 
 

Sending well wishes your way.

 

x