oestrogen and DCIS



  • Della
    Della Member Posts: 35
    Hi all,

    Thank you so much for sharing me these valuable knowledges.
    The pathology not complete yet when I saw my surgeon last Wednesday 27 Oct 21. Surgeon mentioned my lymph nodes clear. but I am at borderline to have chemo and rad, heard this "chemo" make me scare. have to wait their meeting between surgeon, oncologist, rad. 
    Are the treatments can be more than one option ? and I can choose which the best for me? 
    The surgeon mentioned about Genomic essay testing, have you guys ever take this testing ? 
    and also gene testing related to research ?

    @arpie you mentioned about a copy of record of the result, may I know what kind of result they would give to me? this result from the surgeon or from oncologist team? is this related to the cancer pathology and lymph node ? is this some kind of report with the details what have been done in my surgery? I am sorry to ask you many details.

    @StrongCoffee, I have oncologist booked on 17th nov. I am not quite sure how long we have to wait from surgery to the treatment(chemo/rad). Hope the cancer does not grow so quickly.

    @iserbrown, regarding the tablet, surgeon also mentioned that after chemo/rad I have to take tablet at least 5 years. If I not wrong the nurse mentioned it might be temoxifen (hope pronounce correctly) since I am 50 years not menopause yet and this tablet will stop oestrogen production. Have you take the same tablet ? 

    I am still feel pain under my armpit where the lymph nodes taken (surgeon said 2 lymph nodes taken)
    do you guys take antibiotics for this surgery ? do you feel warm sometimes after the surgery ? 

    I have so many questions in my mind about whats gonna be my next step, hope I am strong to handle it since I have been avoiding many nice food (ice cream, chocolate, cake, fried chicken) due to this cancer. mostly eat fruit and vegetables, sometimes chicken(corn chicken) and make me lost my weight... which is not good. I am already small...

    many thanks,

  • arpie
    arpie Member Posts: 7,453
    Great that your nodes are clear, @Della ..... did he say if the 'margins were clear'?  Maybe ask the Onc when you see them.  They will have access to your Pathology report too.  Fingers crossed you don't need the chemo - but they Onc will explain all that to you .... 

    Re Genomic Testing - I didn't have it done, but we did have it done earlier this year for my husband's cancer - to see if there were any mutations in his cancer that may enable more specific targeting with his chemo.  Ask them the cost (as it can be a tad expensive.)  Do you have children?  The Braca Gene test is to see if you may have it & may pass it on to them - if 'yes', they could be tested too, if they wanted to find out.  I don't have children, so didn't need that. 

    Re the copy of the results - when all your pathology results are 'in' .... ask for a copy of your pathology from your surgeon (or ask your breast care nurse to grab one for you!)   It is good to have for your own records.  Your Surgeon will also report back to your GP - so ask THEM for a copy of the surgeon's report too ....  I just grab copies of whatever I see!!  After you see the Onc, they will report back to your surgeon AND GP ..... lots of reports!!

    The lymph node removal pain under your armpit can take a couple of months to settle .... mine did.  It was also a tad 'numb' after that as well.  I can't remember if I was Antibiotics - usually only if your wound goes red/sore, I think.  Your surgeon should have checked your wound at the appt on Wed?  Did he?  If you are concerned at it being warm (which can be an indication of infection) either get checked out by your breast care nurse, or see your GP - don't put it off.

    Re food .... just go back to eating whatever you enjoy & like - just with moderation.  There is no rhyme nor reason for you getting BC in the first place - so you can't really blame your food habits on a 'guess' ..... vegans get BC, meat eaters get it - my husband was an incredibly fit triathlete who never ate any 'wrong foods' or drank booze & ended up with stomach cancer!  So .. it is all just TOTALLY unfair!  Don't deny yourself food that you like & enjoy.  Specially if you can't afford to lose weight!  (I'd give you some of mine, if I could!  ;) )

     Take care, keep busy doing what you love ..... try not to overthink the whole thing. xx
  • StrongCoffee
    StrongCoffee Member Posts: 128
    I had the genomic testing. Mine was Endopredict and it cost $3000. It will probably depend on the final 'grade' of your cancer once all the pathology is in. It is only recommended for grade 1-2, HER-negative, 0-3 lymph nodes involved and a Ki67 under 10. So it could be it's not grade 3 as first thought or your Ki67 may be very low.

    As I chose a mastectomy rather than a lumpectomy (breast conserving surgery), I did not need radiotherapy. My endopredict came back low. So also wasn't recommended for chemo. From memory, scientific evidence supports starting chemo within 3 months of surgery.

    It's fantastic that your nodes are clear! It will take a while for that area to stop being sore. I have the mesh holding my implant in place stitched to that area as well and, after 6 months, it's still sensitive to touch.

    I can't remember if I was on antibiotics. If so, it was just for the first few days after surgery. The warmth definitely sound like something something your GP to look at sooner rather than later, as it's a high chance it's being caused by infection. I had pains, twinges (especially after a few weeks when nerves started reconnecting), tenderness and phantom pains in my non-existent nipple. But never warmth.

    I'm on tamoxifen as I'm pre-menopausal. I don't find the side effects too bad. I take it in the morning as I feel agitated for the first 6 hours (so caused insomnia at night). Vitamin B12 is helping that. And I'm taking magnesium for leg cramps/aches from it. I have inflammatory arthritis/spondylitis, so I can't say if it's giving me bone/joint aches as I already had them! After almost 6 months I'm noticing some issues like UTI-type symptoms that would be caused by it. On the plus side, it has stopped my perimenopause hot flashes and made my skin produce oil again like when I was younger. It doesn't stop estrogen, it blocks the receptors. What they've found is is had an anti-esteogenic effect on some parts of the body and an estrogen-like impact on others, such as the uterus. It can increase menstrual bleeding, but I've had an ablation in 2020 so it's not an issue for me.
  • Della
    Della Member Posts: 35
    @arpie regarding the margins I will ask oncologist team when I see him.
    My surgeon have checked my wound and she said is good. I have seen my GP yesterday and mentioned about feeling warm and he gave me prescription for antibiotics just incase i need it. I just take it without waiting the infection appeared.
    I remember my sister in law had ovary surgery and no antibiotic taken and she had infection, come out yellow blood/pus, the infection went so bad and she had to have another surgery to clean that. I don't want to take that risk. hope I am doing the right things having this antibiotics.
    The gene testing is not the Braca (BRCA1 and BRCA2) testing, this is another new gene research "HBOC", I am afraid of the consequences/result, I am not ready to face the result for myself and my children, this causes another stressful/depressing for my family. 
    You right, my auntie she is vegetarian and had breast cancer, she said stressful caused this cancer. she is good now, it has been 7 years cancer gone. I love to have some weight from you if you can transfer :)

    @StrongCoffee thank you for the info regarding genomic testing. I never know if there are many type of genomic testing, will ask my oncologist regarding this test. so this depends on cancer pathology result not the biopsy result/MRI result?
    What is ablation ?
    I am also worry when taking this tamoxifen since I have cyst in my uterus, will discuss this with oncologist, not sure this will affect my uterus or not...
    I also feel pain and hard at my nipple( breast that has surgery) not sure due to the surgery or because of my ovulation days...
    Thank you for the link @iserbrown. I have  printed and bring this as my guidance when meeting with oncologist team.

    Thank you so much all for your help and valuable information, really appreciate it.

    Many thanks,

  • iserbrown
    iserbrown Member Posts: 5,511
    "Hormone therapy | Breast Cancer Network Australia" https://www.bcna.org.au/understanding-breast-cancer/treatment/hormone-therapy/

    Not sure if you have seen this link.  

    So much to take in

    Take care
  • StrongCoffee
    StrongCoffee Member Posts: 128
    It sounds like they're recommending you for genetic testing not genomic testing (which is what I had) if it's HBOC. I don't believe this will impact on their treatment decisions.
    An endometrial ablation is where they "burn" away the endometrium of the uterus. I had it done due to low iron from heavy bleeding. There are other hormone medications that may be more suitable if you have a uterine cyst. Your medical oncologist can help to explain all the options and the different side effects.

    Good to hear that you have antibiotics already. Definitely take the full course, it won't cause any harm if you don't have an infection but will be well worth it if you do.
  • Della
    Della Member Posts: 35
    thank you so much @iserbrown for the link, do you have link related to diet food for having this hormone ER/PR receptor. I love to eat tofu and soya bean milk and others beans but since they have highest estrogen, this will feed the cancer to grow....

    @StrongCoffee, surgeon mentioned genomic testing as well since my parents' history - has cancer and cirrhosis. but the decision is from oncologist team she said.

    many thanks,

  • Della
    Della Member Posts: 35
    Hi All,

    I have seen my oncologist this afternoon.
    I have 2 options, chemo + rad or rad
    Chemo is like life insurance or house insurance to protect the cancer recurring.
    I am confused...
    I dont want the chemo but without it the cancer might recurring ???? 
    I dont know what to do...
    Chemo is an option since they found that some cancer already in the blood vessel - LVI . this is new term for me.
    and my cancer is grade 3
    my cancer is small 14mm, ER/Pr positive Hers2 negative and 2 lymph nodes are clear.
    @arpie, you mentioned about margin, is it the LVI ?

  • Afraser
    Afraser Member Posts: 4,328
    Chemo is a ‘sweeper’ of the body - it’s job is to kill any cancer cells that are circulating. Surgery and radiotherapy are targeted, they affect specific parts of the body. But chemo affects all of the body. Which is why it can be unpleasant. Reactions to chemo vary a lot. Some people have very strong reactions, including nausea and fatigue, others (like me) fairly mild reactions and it’s almost impossible to know which, until you start. Hair loss (temporary) however is common. Your oncologist is best placed to advise on how significant chemo might be but the choice is yours. Chemo isn’t a lot of fun but you will have the knowledge that you have done everything possible to avoid a recurrence. Best wishes. 
  • Julez1958
    Julez1958 Member Posts: 1,088
    Hi it is all a lot to take in but there is a certain extent to which you have to trust your medical team.
    My own story was that I had a large (5.5cm) lobular tumour in my left breast which had not spread to my lymph nodes and it was ER positive, grade 2.
    I was recommended radiotherapy because of the size of the tumour but not chemotherapy and I took the advice.
    I decided in the end to have a double mastectomy and DIEP flap reconstruction.
    There is a wealth of information on this website and no question on this forum is too silly , we have all been there in one way or another.
    when you get through the surgery ( or even before if you have time) have a listen to the Dr Charlotte Tottman podcasts I found them really helpful for the psychosocial aspects of breast cancer.
    I am now 12 months post diagnosis and 3 months post the DIEP surgery and getting more back to my “old self “ ( although I will never actually be that  person again) every day, so there is light at the end of the tunnel!
  • arpie
    arpie Member Posts: 7,453
    @della.  I am not sure what LVI is ... maybe check with your Onc/Breast Care Nurse.

    The margins is getting ‘clean flesh ‘ as well as the tumour, so they can confirm that they got all the tumour as well as surrounding clean flesh.  The pathology report should indicate how much clean flesh was removed ( usually in mm’s). Ask your breast care nurse to check the margins - tho if they weren't 'clear' you would have been advised by now & possibly gone back for further surgery. So I am guessing that isn't something you need to worry about. 

    Yep, as @Fraser said - the role of the chemo is 'mopping up' any randoms that may have escaped ... hubby only had 1 positive node (out of 30 tested) and he still had chemo 'just in case'.  I reckon with this disease, you don't want to be asking later on ... 'what if' ..... you've gotta chuck everything at it that you can .... so with discussion with your Onc, you'll work out a plan.

    I only had radiation (chemo was never put on the table with me) so I was one of the lucky ones.  

    take care & all the best xx
  • iserbrown
    iserbrown Member Posts: 5,511
  • Della
    Della Member Posts: 35
    Hi All,

    The decision is on me, my oncologist give me 2 set of treatments, 
    chemo + rad .....
    rad + shut off the ovaries while waiting the ovaries surgery(due to covid i assume) they will do implant every 4 weeks (inject ovaries from my tummy with something i heard ...no idea how long the needle ...make me anxious)

    then hormone therapy after radiation.

    LVI is Lympo Vascular Invasion, since they found cancer in blood cell and my cancer is grade 3 aggressive...this make me have to choose chemo or not
    i forget to ask, I just thinking that if I choose Radiation and they shut down my ovaries since this cancer is hormone sensitive (ER+7/8 and PR+8/8) no idea what the number for ...
    then If I do regular check up on my breast USG and mammo after the radiation as precaution if cancer recurring, this would be ok as well ...so no need chemo...

    or the cancer might jump to another place in my body ??? since it has is my LVI ???
    Clear lymph node does not mean 100% free cancer .... since the cancer can go via LVI my blood.

    I have no idea whether I am thinking is right or not ?

    many thanks