New here, waiting for a second lumpectomy

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Hello all, I was diagnosed with stage II DCIS back in December, my GP referred me to the breast cancer clinic and I had my mammogram and biopsy on the 6th of January.

I had to wait almost 2 months for my biopsy results, my first follow-up appointment was cancelled due to a staff shortage.

After that they moved pretty fast, 3 weeks later I had the lumpectomy, they removed a 3 cm lump and cleared a 5 cm radius, 2 months later I`m almost healed but unfortunately I`m waiting for a second surgery in a month from now as they found a margin with precancerous cells Disappointed

I`ll probably have radiotherapy sometime in July so it`s a long process Disappointed

I was told last week that the second surgery incision would be smaller, I currently have a massive scar as they pulled a few lymph nodes, I was never told how many but I had the all-clear, the sentinel nodes were negative.

Yesterday I got a resume letter about last week's appointment, again the breast cancer nurse never mentioned that I have triple negative cancer and the implications, I spent a few hours last night reading online about it and found out that it`s a more aggressive form of cancer and the recurrence rate is higher.

I saw the BCN twice,a different one each time and a different female consultant as well, they didn`t tell me much or explain in detail the diagnostic or next steps, I had to research myself online.

I still don`t know how I`ll feel during and after radiotherapy, if I`ll be able to drive to my appointments or work or if I should go sick again.

I kind of feel invisible at work, they were supportive while I had 3 weeks off sick to heal and a month on phased return after but I don`t know what`s going to be in the future or who to talk to about needing a temporary workplace adjustment while undergoing radiotherapy.

I will keep researching if needed and I`m glad I found this forum, plenty of information here.

Thank you all for reading and sorry for the long post :)

  • Hi  

    Welcome to the forum (although obviously you'd rather not be here).  I'll start with the good news - DCIS being, as you say, pre cancerous is the best type of cancer you can have.  It's actually stage 0.  So, although you have triple negative it's not as much of a worry if it had turned into cancer.  (I had a tumour and DCIS and I only found out much later that the DCIS, (by asking for my hospital records) was a different type to the main cancer, so clearly they aren't as concerned about telling us about DCIS as they are if we have a tumour.

    Each of us has a different number of sentinel lymph nodes, so they would have just removed those.

    I totally understand when you say they don't explain.  It's a whirlwind at the start isn't it? and you don't know what questions to ask.  I was only told by the surgeon just before the operation (hadn't met him, but a female consultant previously) that I'd be left with a dent in my breast as I was having 80mm removed as I had 2 areas totalling 54mm of DCIS as well as the tumour.  Had I known that I would have asked if they could fill the dent whilst operating, but I missed out on that and clearly don't want yet another operation out of choice.  I still don't even know if it would have been possible 'cause once the chance went, there didn't seem to be any point in looking.  

    Don't use Dr Google as a lot of it is woefully out of date - stick to the main dedicated sites - MacMillan, Cancer Research, Breast Cancer Now, for example.

    With regards to the radiotherapy.  We all have different reactions.  I personally was fine.  I think it's changed since I had it nearly 7 years ago as I had 3 weeks of 15 sessions.  They often now do stronger sessions over a shorter period of time.  But for those 3 weeks, I was able to drive the 60 miles (there and back) to my sessions after work and I was fine. What I will say, is that drinking, I believe makes a massive difference to the potential fatigue that can be suffered with radiotherapy.  There were 4 of us that went at the same time.  2 of us drank a lot more than usual and the other 2 who didn't drink much suffered badly with fatigue.  Part of your instructions will be to drink lots of fluid.

    I did have some burning, but it deal heal and you should use moisturiser.  In hindsight, I would have stopped putting it on underneath my breast by week 3 as this is where it rubbed on my bra strap.  I purchased a very expensive gel, but in actual fact, I could have saved myself a fortune and gone to the local Holland & Barrett and bought some aloe vera gel (the gel is the important bit) as it is exactly the same as the expensive one I bought - £75 later!!!  The radiotherapy team will go through moisturising and when to do it with you.  You don't even know when you are being zapped, only know by the fact that the machine starts whirring, so it's completely pain free.  It's only a pain being 'manhandled' by the team to get you in the correct position, but other than that, it's easy.  I didn't need chemo. as I had oestrogen positive tumour which was tablets for 5 years, SO grateful not to have had chemo. and I worried about the radiotherapy - but I didn't need to at all.

    You could start off going to work and then if you feel you need to take time off presumably you could do that?  Here's a link that should prove useful to you when it comes to your employment.

    Hope this helps a little,
    All the best, Lesley

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  • Hi

    I have DCIS and 3yrs ago had lumpectomy and radiotherapy but have been told I'm looking at a masectomy as can't have radiotherapy in the same breast ?Thinking

  • Hi     

    Yes, that's correct unfortunately.  Sorry to hear that you are having to undergoing a mastectomy and that it has returned for you.  Certainly not good news for you Disappointed

    Kindest wishes, Lesley

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  • Thank you but at least its pre cancerous,  different to last time and at least I'm not going to be anxious every yearly mammogram that it might return. I have MS too so don't want to put my body through reconstructive surgery as this will have a massive impact on my MS which thankfully is stable at the moment   

  • hosp letter

    Hi Lesley, thank you so much for your post, it`s more information there than the hospital staff gave me Slight smile

    I`m a bit confused about this DCIS being stage zero, I`ve been told it`s a 3 cm cancerous lump which was removed and they also cleaned on a 5 cm radius.

    They said the lump was stage II DCIS and just the margin they found after removing the lump has precancerous cells. If I remember correctly that is Disappointed

    I also had my lump sent to that lab in California and they said I would not benefit from chemo, I`ll get radiotherapy instead.

    I`m attaching a print-screen with the latest paragraphs about their findings, no personal details there Slight smile

    If someone can explain to me what all that means, I would be grateful Slight smile

  • Good evening everyone, I had a phone call last Friday and my second surgery due on the 7th of June has been moved to Friday the 17th Disappointed

    I already had my pre-op assessment earlier today, I have to arrange things at work now, didn`t expect to be brought forward so fast.

    Hope it`s not a bad thing and I was just lucky.

    I still have no answers about my triple negative letter, hopefully, I`ll get some answers on Friday Slight smile

  • Stage 0 means that it hasn't spread, it is contained. I presume that stage 2 means grade 2 which is intermediate grade, i.e. the cells don't look like normal cells but are not as poorly defined and as fast growing as high grade DCIS.

  • Good evening all, as a way of an update, I had my second surgery yesterday, the consultant marking on my breast is as big as the first lumpectomy, so far I`m fine and in moderate pain, I was discharged late last evening.

    She didn`t say much about what`s next, only that I`ll get the results in about 4 weeks time.

    More waiting but hopefully I`ll have clear results and I`ll start the radiotherapy sometime in July. Not looking forward to it :(

  • Sorry for the delay, I've been abroad on holiday.

    Right, I see it from your letter now.  You have had similar to myself   Grade 2 (being the growing speed of the cancer - 1 being slowest, 3 being fastest) and stage 2. Mine was stage 1 as smaller than your tumour, with 54mm areas of DCIS which is stage 0, so not included in their staging of the tumor. 

    Your treatment will always be based on the cancer and not the DCIS as the DCIS is always classed as the stage 0, whereas your cancer is stage 2 (due to its size).  I suspect they said grade 2 DCIS.

    Here's more of an explanation 

    You had a cancerous tumour (and they then take about 5mm around it to be sure of no other stray cells and they call this a margin).  In this margin they found DCIS.

    Your letter states you are triple negative - (negative for triple negative).  They don't worry about what the DCIS is because it's 'only' pre cancerous (mine wasn't positive for ER/PR, so completely different from the cancerous tumour, but despite it being 2 areas in total of 54mm and grade 3, they just did my treatment on the cancer).  ER/PR 8/8 is great as it means you respond well to the oestrogen blocking tablets - I was the same and the Oncotype DX test wasn't around when I got cancer (the test you had sent to California) but having taken the tablets for the 5 years I'm still ok.

    So, the only reason they are going back in, is to remove the area of DCIS - not great, but at least they found it and your sentinel lymph nodes were clear.  The DCIS hasn't turned into cancer, so just taking it out wouldn't be a 'rush job', they've just got the 'slots available' and adhering to NICE guidelines, so don't worry about that.

    I hope this helps a bit more and good luck with your next lumpectomy.

    Lesley

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  • Hi Lesley, thank you so much for your thorough interpretation, you are much better than the hospital staff Slight smile

    The only positive thing the consultant said is that I don`t have triple negative cancer, google didn`t help me put my mind to ease Slight smile

    Hopefully, I`ll find out more when I`ll get my results, for now, I`m resting and waiting for the second surgery to heal Slight smile

    Thank you again and have a great day :)