How long does it take?

FormerMember
FormerMember
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Hello, I'm new here and was diagnosed with IDC hers2 negative, er positive 15mm breast cancer on the 5rh of December. 

Apart from an appointment to get my biopsy results and an information pack, not a lot has happened. I was told by the nurse I would be having a lumpectomy, sentinal node biopsy and radiation and hormone therapy.

I have an appointment at the breast clinic on the fifth of January. I am presuming this is to see the surgeon... the letter doesn't say anything. (apart from the three pages about covid).

I am 51, my sister died at 53 from secondaries with breast cancer and a school friend died last weekend, also from secondaries from breast cancer. The only two women I know who have had breast cancer in their early 50's have both died.

I have been quite optimistic until last weekend, now I am scared that this is all taking too long and nothing is happening and am terrified that it is spreading, even as I type. Every ache, pain, twinge is scaring me.....

Why is everything taking so long?

  • FormerMember
    FormerMember

    Sending hugs. The waiting is awful. You should find help and advice here. I certainly find lots of empathy. R. 

  • FormerMember
    FormerMember in reply to FormerMember

    Thankyou for replying Rebecca, hope you are doing well?

  • FormerMember
    FormerMember in reply to FormerMember

    I’m counting the days until the results of my second surgery. Mostly hopeful but just want to hear what is next. It occurs to me that information is known long before the patient hears it. And then often the terminology is baffling. Surgeon and nurse spoke of an inferior margin. Right so this means a margin at the bottom of the breast tissue. How should I know that?! ;-) 

  • FormerMember
    FormerMember in reply to FormerMember

    Hi Rebecca, I know! They seem to know what is going on and give you snippets.... it doesn't even tell me what the appointment is for! When I got a phone call to go to the breast clinic, they wouldn't tell me what it was for and it was for the results!   I guess we have to ask. 

    I'm sorry you've had two surgeries, can you tell me what your diagnosis is? I think the margin is the amount of tissue they have to take from around the tumour. It has to be clear to make sure they get it all. Perhaps inferior margin, means they couldn't get enough to check if it was clear? I don't know, maybe this is why they should tell us things! Hope it comes back clear for you, good luck x

  • FormerMember
    FormerMember

    It isn't a long time really.  I was diagnosed in October and had my mastectomy on 3 December.  You are probably right about seeing the consultant about surgery on 5 January.  Your surgery will probably be about 2-4 weeks from that appointment.  As you are not being offered chemo it sounds like yours is similar to mine.  I was told chemo wouldn't affect my type of cancer.  I think this type is fairly slow growing so don't be too bothered about the wait,  You may also need a CT or MRI scan just to check it hasn't spread elsewhere.  The waiting is the worst part.  Once you have your full treatment plan you will feel much more at ease.  I get the histology results of what was removed during my mastectomy on 6 January and, hopefully, will be told they got it all.

  • FormerMember
    FormerMember in reply to FormerMember

    Hello Lesley and thank you for replying. I'm sorry you had a masectomy, but glad that you have had the treatment you need. I cannot wait to have mine! A lot of people on here have mentioned having an MRI, but no one has said that I would need one yet. Maybe the surgeon will tell me more. 

    I found my lump 13 weeks ago and it was about four weeks in I decided to have it checked. Took ages to see the GP and then 3 weeks to get an appointment at the breast clinic. I had a mamogram which came back clear and then an ultrasound where they found it. They tagged it and sent me back for another mamogram. I was told I had cancer there and then and sent on my merry way with a piece of paper with some helpline numbers on. 

    About ten days later I had a call saying come to the clinic where I was given my reslults. Stage one, Grade 3 Invasive Ductal Carcinoma. Fortunately it is oestrogen positive and HERS2 negative. The nurse said I would be called in to the surgeon who would fit a magnet, do a lumpectomy and a sentinel node biopsy. I would need ten years hormone therapy afterwards. That is all I know.

    I have a family history and I was receiving annual mamograms until I hit 50... Then they stopped and I can't help thinking, that if I had had a mamogram last year when I turned 51 it might have shown up then, when it was tiny.

    I hope you are recovering well. Do you need radiotherapy?

  • Hi , your beast sounds very similar to mine - if you click on my user name you’ll see my profile. I was 59 when diagnosed so a bit longer in the tooth! I’m 2 years on now after lumpectomy, sentinel node biopsy and 3 weeks of radiotherapy. And I’ve been on hormone therapy for 2 years. 
    Other than the mammogram and ultrasound at the breast clinic, and a CT scan at the radiotherapy planning appointment, I haven’t had any other scans. I don’t know whether it’s a postcode lottery thing or the type/ stage of the cancer. So far, so good, I’ve had 2 follow up annual mammograms and all appears well. 
    Re time scales, I have also heard that these lumps grow very slowly so try not to add that worry to the mix. It’s all stressful enough! The waiting is just tortuous, hopefully you’ll feel better once you have a plan and some definite dates. I had a 10 week gap between surgery and rads which made me very anxious, but in the event I was actually glad of the healing time. The gap was partly due to what felt like a very long wait to see an oncologist, then Christmas and new year got in the way as well. 
    Wishing you well and sending love and a gentle virtual hug, HFxx

    HappyFeet1 xx
    Don’t be afraid to cry. It will free your mind of sorrowful thoughts. – Hopi
  • FormerMember
    FormerMember

    Hi rebblespad

    Guessing you live in the UK? Maybe it depends on your Health Authority. Everything has worked very fast for me. I live on the south coast, Brighton. I am 61 btw. After seeing my GP, day after discovering the dreaded lump, which was 8,10.20 I was seen by a consultant in 12 days and operated on (lumpectomy 2 lymph nodes) a month later. I am now 5 weeks in and know that I need radiotherapy, scan and tattoos on 30.12.20 and my hormone tablets start 1.1.21. I have a very optimist life in front of me, although this whole thing does seem to stretch on forever and there are so many appointments and so many people to show your thrupenny bits to! Everyone I have seen has been so supportive and friendly  

    The waiting is awful but if you do not feel you are getting the right treatment then do talk to your GP. 

    I hope you have been able to enjoy Christmas. This dreadful Covid makes life so much worse for us all. 

    Good luck, my friend. Sparkling heartRainbow

  • FormerMember
    FormerMember in reply to HappyFeet1

    Thanks Happyfeet, that was very reasuring and made me feel much better!  

    Lol the thing about crying really hit home... I'm a dooer, a strong, keep going person and I haven't had much crying time, which I think is going to bite me in the bum when it's all over! I will have a read of your profile, but yes, it sounds very much like we started out the same. So glad you are doing well x

  • FormerMember
    FormerMember in reply to FormerMember

    Wow! you have managed to get everything done so quick! I'm in the northwest... I know, when I went for my biopsy results two weeks ago that my surgeon was on her holidays and then there's Christmas, so, that is probably why it is taking so long.

    So pleased you've been seen to so quickly and you're moving forward with a really good outlook too!

    Can I ask, what are tattoo's? Well, I know what they are, but I am confused. Sorry if this is a delicate subject and pardon my ignorance.

    Thank you for taking time out to reply x