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Breast cancer - confused and need a rant

Clarky15
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Long post alert. I need to get a few things off my chest and feel this is the only way I can as my husband doesn't like talking about it all...
Diagnosed ER+ HER2- in Feb. Grade 2 and grade 3 cancers, 2 in 7 lymph nodes involved. Just had 4th op to try and clear margins. 
I was told in the beginning that I'd need radiotherapy after surgery. A few times, the Optima trial has been mentioned and I had a BC researcher call a few times asking me to agree to go on it. I ended up declining but why would this be mentioned if chemo is not needed? Even my surgeon mentioned it after finding the 2nd affected lymph node. I spke to my nurse about oncotype score and she said that mine was not sent off for a score as it is either yes chemo or no chemo. But she then wouldn't tell me either way. In another phone call some weeks later, I was speaking to another nurse and she said chemo is likely... but this will be discussed with my oncologist. so confused! I've not seen an oncologist yet.
I've found a lump in my good breast and waiting for a scan date for that. 
When my 3rd op failed to get clear margins I was told by registrar that a mastectomy was needed. My surgeon returned from holiday, disagreed and convinced me to have 4th lumpectomy as cancer was out and just DCIS margins to clear. My husband saw this as I'm basically cured. He told our small group of friends and when we all got together they sang 'Congratulations' at me. Loads of hugs saying they are so happy for me. As if it's all over. Hubby doesn't get why I'm still worried/upset. He's a wonderful man but I don't think he gets it. Whenever I try to talk about my concerns he just says 'you're cancer free, stop worrying'. 
This whole thing is taking over my life and feel a bit trapped. Some days I'm absolutely fine. Other days I just want to cry. 
I just want to know what is next. If it is chemo, fine. I can deal with it. It's the not knowing for sure. 
Sorry, that was a long rant. 

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    Sorry, just sent a big reply to you and it didn't post.  This site can be annoying sometimes.

     

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    I'll send you something tomorrow, you've got a lot going on still.

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    Hi Clarky15,

    Sorry that you're going through this.

    I was diagnosed with grade 1 ER+ HER2- in June. I was talked into having a mastectomy as my tumour was quite unusual and the consultant was honest and said she just wasn't confident that they'd remove the tumour and get clear margins, she also said I'd lose my nipple either way and my breast would likely look quite odd anyway. 

    I had my mastectomy 4 weeks ago. Like you, to begin with chemo was never mentioned. However, I've now had my results, the tumour is double the size they thought it'd be - 6cm, now grade 2 and I had micromets in one if the two lymph nodes that were removed. Because of all this, chemo is now up for discussion. I have an oncology appointment tomorrow to get more information.

    The unknown is the worst part! I've been dealing with it all quite well as from my diagnosis to my surgery, everything moved so quickly and I knew what the plan was. These last couple of weeks, not really knowing my next steps have been hell and tomorrow can't come quick enough! 

    I understand your frustrations with your husband and your friends! The surgery is just the tip of the iceberg, there's still so much more to come in your recovery and it's so true that no one understands our struggles unless they've been through/are going through them which is why this forum is great! Unfortunately I don't think it'll ever really be 'over' for any of us. There's going to be a new normal but I know for sure I'm never going to be the same person ever again. For a start I spend most days on my phone looking through forums, researching all things breast cancer, radiotherapy, chemotherapy. It's my way of feeling in control but my god does it consume you!! 

    Do you know when you might receive more information? X

  • Offline in reply to Jamie90

    I know what you mean about spending loads if time on forums etc. I'm reading things daily. I do try to not spend too long on them now as I was virtually spending all day looking for answers that no one could answer. And most of the time I just ended up with more questions. 

    I should get results from my op in around 2 weeks. Still waiting for an ultrasound appointment for other boob. BCN told me it could be a few weeks and I have to wait for them to contact me. 

    The waiting part is the worst! Living with a constant knot in my stomach.  I try to busy myself to take my mind off it but nothing does. 

    I'll be thinking of you tomorrow. Hope it goes well. X

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    I've had a similar experience with the issues of Chemo or no Chemo.

    I had a full mastectomy 30th May my choice.

    I thought I would get away with Chemo but as the tumour was 8 cm the oncologist wants me to have chemotherapy now and I start on Tuesday.

    If they offer you chemotherapy go for it for peace of mind good luck  

  • Offline in reply to AJ666

    If they offer, I will go for it. I want everything thrown at it to get it gone! Ultrasound on other side tomorrow as found a lump a few weeks ago. Mine weren't that big! Blimey! Mine were 26mm and 16mm in over 90mm of DCIS.

    Hope it goes well for you and you don't feel too rough xx

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    I feel like it's quite a lonely thing having cancer. Even with well meaning family and friends around. Also, there are times when I want it to be private as when my husband worries about me and my future, it makes me more worried. 
     

    i think it's unfortunate that the professionals aren't being clear with you. Of course you would be confused and frustrated. 
     

    i hope it goes well. 

     

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