New diagnosis

Hi, just diagnosed with stage 2 ILC (Lobular) with two tumours, so mastectomy due within the next two weeks probs. Bit shocked ! keeping busy and making plans to help me cope. Won't know if i need chemo til the op, incase they find another bigger tumour or lymph node involvement. Self employed so now having to apply for ESA.

just writing down my diagnosis is both gutting and helpful. Feel a little as though I've been acting in a play all week, letting people know etc. Good to find a resource just for us..

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  • So sorry to read of your diagnosis, yes it does help to write things down, I'd also suggest you keep a separate pen and paper and write any medical questions down then take pad and pen to appointments and write down the answers, sending good luck love and hugs for your surgery and subsequent treatment xxxx

  • Thank you Jenny, I will, sending back to you too xx

  • Welcome, Tarn2103, and my sincere condolences.

    I was diagnosed with the same type and stage thirteen months ago.

    There are some characteristics of Lobular type of which you should be aware, in case they would make a difference as to your surgery choice. One is that Lobular type is more likely than the more common type to have bilateral occurrence. Another is that Lobular type can be very difficult to detect by the usual breast imaging. For these reasons, many decide to have bilateral mastectomy for even a single known ILC tumor.

    Yes, a breast cancer diagnosis is always stunning.

    You can use your nervous tension to make preparations for your recovery from surgery. You may want prepared frozen or shelf storage meals so you will not have unnecessary bother about food preparation, cleanup, etc. Do you have someone who can look after you for at least the first few days following surgery?

  • Hi again kewpie and Tarn. I've just got back from my consultation today for chemo for tomorrow. I emailed a list of questions to my ONCO on Monday and the lovely acute oncology nurse specialist I saw today answered them for me, to my satisfaction I add.

    I was intrigued to find the oncoDX test costs Β£2k and has a 10 day turnaround because it gets sent to the states to be tested how about that. So they only employ that test for borderline cases and or if the braca1 gene is present. I was not borderline nor brca +ve so no oncoDX test for me.

    In fact it would only be a +ve brca gene breast cancer patient that would be offered a bi lateral mx! Bless her tho she did say that that wld be something to consider and discuss after the current treatment so I wasn't completely fobbed off.

    She also confirmed that for ILC bc patients the possibility of recurrence in the other places is slightly higher than in ductal bc......yes it's true lobular can be missed on mammograms but seen on MRI as is more thorough and no there is no screening program in place to catch it early other than the yearly mammogram as the follow up treatment plan, reverting to the normal five year mammogram after five years.......which begs the question if this is missed on mammograms what else is there?

    I would like to think I could self refer for a yearly scan, MRI being the preferred scan, maybe possibly for the rest of my life? Haven't yet investigated. It may be cheaper on the continent but for how much longer....πŸ˜³πŸ˜„.

    Food for thought.

    And also it's worth remembering that everyone's situation is different due to our unique physiology, our age, general fitness, diagnosis detail, local health authority (dare I say it funding) and wether like me you attend a district hospital or may be closer to a university hospital (Southampton) who get more funding. So my comments are very much specific to me and my set of circumstances and do do do ask your own team all the questions you have as they are best placed to apply all the variables to your specific situation.

    Thinking of you and wishing you both well xx

  • Hi Debster! I'm in States so things get done a bit differently here - everyone gets the OncotypeD test - if you are lucky the insurance pays for it, if you have some luck ( like me) you pay for a portion of it and if you are all out of luck - you get forced to pay for it, it is upwards of $4000 for us too- except we all have to do it regardless of pennies in the bank! I'm super glad they don't charge anything for your treatments!! I'm already out $5K and I'm on month 2 of diagnosis!! πŸ’ΈπŸ’ΈπŸ’Έ

  • Crikey, didn't know that !! What did you do ?

    Yes, thanks for the tips, luckily my husband will be around to help me

  • I had bilateral mastectomy (for the cancer side it was modified radical mastectomy). I did not have any reconstruction.

    Please know that what I wrote already and what follows are not meant to scare you -- only to make sure you are aware, in case these characteristics would make a difference as to your surgery choice.

    By the time mine finally made itself known in an annual mammogram, it was actually more than twice the size it then appeared to have in the mammogram and ultrasound imaging.

    I know it is scary. My word, scaring you is not my intent, nor is it my purpose to influence your treatment decisions. I am telling you only to make sure you are informed of those things about ILC, as they may bear on your risk considerations for choice of surgery.

  • Welcome to the group that nobody wants to join!

    My cancer was ductal so I had single mastectomy, it looks like you totally understand that until surgery and results future treatment may change regarding nodes etc, which is good that they have explained that well.

    What type of cancer is it? ER+ or HER 2

    The size of tumour can change, they reckoned mine was 17mm it was 25mm when removed, so I reckon there sizing before is not very accurate.

    I had an implant and it went well, went home same day it certainly is the quicker recovery op if you are looking for reconstruction from my experience. I was amazed how quickly I was back to normal, but of course everyone is different, and it will depend on your fitness levels.

    Nearly two years later, I still cannot believe that I had cancer, don't think it properly sinks in.

    Hope all goes well for you Deb x

  • Thanks Debs62 that sounds more hopeful.

    Not sure re camera type ?

  • I mean cancer type

  • Just looked up what those abbreviations mean and I'm ER + whole new language to learn ! So I can take tamoxifen

    Which were you Deb ? Did u have immediate reconstruction?

  • My cancer type is ER+ and I take letrozole, and will do for 10 years in total.

    I had reconstruction at the same time as mastectomy.

    Yes lots of different types of Breast cancer, and that will depend on what treatment is recommended.

  • Sorry to near about your diagnosis .. Life will seem unreal but once you have your plan of action things will come together , at the moment things are up in the air .. And I found writing down all the questions that popped into my head helped .. So when I got to see the oncologist or surgeon I would remember them . Good luck , there is always someone here to listen x

  • Thanks Mandy xx

  • Sorry to hear of your diagnosis. This group is brilliant for support. The only thing I would add is to contact McMillan to see what benefits or financial assistance you may be entitled to. Wishing you all the best for your recovery xx

  • Thanks Lorraine,

    I will, every little helps :-)

  • Good luck on your journey ! I could not get any financial support as I had had a career break but worked for 20 years prior to this ! Macmillan did help me for financial for heating costs so contact them also. I had mastectomy, chemo and radiotherapy, followed by reconstruction. I also had third of my lung removed with lung cancer pruor to chemo. This was in 2010 and I developed lymphoedema in 2012. I have worked since as a mental health nurse, just having 4 months off sick having now developed sarcoidosis ! I am a survivor so it can be done πŸ‘πŸ‘πŸ‘πŸ‘πŸ‘

  • Thanks, it can done πŸ‘

  • Hi Tarn and welcome. I am impressed with your understanding, as per Debs1962 you have received a good explanation of where you are in this process, well done on that.

    My diagnosis was stage 2 Invasive ductal carcinoma until after surgery when it became ILC so I am particularly struck by kewpie' comments above, very helpful as is this forum so any other questions at all go ahead and ask, we are right beside you 😌. And some ladies are ahead of us and that too brings great comfort and reassurance to me. And do keep asking your medical team all the questions you can think of e.g. What are my treatment options? to make sure you are being given all the information you need.

    Wishing you a good recovery from the surgery. My mx was 14 weeks ago now, do take it easy after. You will be given exercises and we all urge you to do your best with them as they are invaluable to a good recovery.

    All the best xx

  • Hi Debster,

    Thank you for good advice. Did you have reconstruction ? Chemo or radio ?

  • Hiya Tarn I wasn't offered immediate recon even tho I only agreed to mx as expected immediate recon. I was given reasons why it's better not to have immediate recon. Right now I'm not sure if I will choose recon.

    My surgery showed sentinel lymph nodes +ve for cancer so went on to have 9 more nodes cleared =11 in total with 6 testing +ve making me a good candidate for chemo so currently half way thro chemo.

    Also my post surgery diagnosis showed 3 tumours, 30, 21 and 4mm plus 'other little bits' so I'm guessing that makes me a good candidate for radiotherapy, to zap any 'little bits' left behind in chest wall or scar.

    Hope this helps Tarn. So far so good for me!

    Keep asking those questions 😌.

    All the best xx

  • Thanks Debster xxx

  • I am 2 weeks post double mastectomy after being diagnosed with the exact same cancer as you - I'm so sorry for your diagnosis, firstly, secondly the shock is quite a thing to experience.... It galvanized me into making decisions I never thought I would.

    My pathology reports came back indicating that I will need further lymph node removal on the 23rd of this month.... Everything I need to do is for my survival so it's all good is my personal mantra. You can do this!!

  • Hi Penny,

    Sounds as though you're keeping your head in the right place. I'm trying to do the same.

    I'm wondering why you had a double masectomy

    Did they find cancer in both breasts ? Or cos it was ILC ?

    Did you have a reconstruction?

    Thank you for sharing, it helps.

    Best wishes for your recovery xx

  • Take care it is a shock initially I was diagnosed march 3016 had chemo straight away as lathe area in my breast and 2 lymph nodes then mastectomy and total lymph nose clearance and radiotherapy now just on herceptin and I feel so much healthier and energised than I did before diagnosis x it's a journey but you will meet many people and gain new friends on this journey and use forums for support and meet up with like minded people x I am eating very healthily and taking an antioxidant gel and I certainly feel so well so take care and get support where you can xx where do you live if you live in Thames valley I would recommend joining chemogiftbag group we meet up and support each other true friends now xx

  • Hi Maggie,

    It's so good to hear the good stuff you've noticed.. I'm already noticing how caring everyone has been .. it does help.

    Thanks for sharing

    Xxxx

  • Hi Tarn, so sorry to hear about your diagnosis. I was diagnosed a little over a year ago, and what helped me come to grips with the C word was to talk about it, I was able to get comfortable with it, and mentally deal with it. I was diagnosed with stage 4 lobular breast cancer, with bone mets.....when i went to have the surgery, i was staged at 3, then with the discovery of the bone mets, i was moved to 4. Honestly, all is good, i feel good (as good as i can) and am thrilled to be living my life

  • Chelle belle1 thanks for your reply, sounds like you've got a great outlook :-)

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