new member

hello i was dx 11 june my 30th wedding anniversary with invasive ductul cancer. I have since had WLE and SNB had some results no lymph node involvement and clear margins but grade now 3 not 2 as thought originally no LVI BUT no results from hormone test yet. I am scared and worried about everything now, trying hard to keep normal I am afraid that they are keeping something back as many ladies know there hormone results at diagnosis.I have got appt to see onc and it stated that i may be offered clinical trials is this a standard letter unable to get intouch with my bcn at present . Sorry reading this back i sound such a defeatist never had surgery before and was amazed that it was fine no problems recovered well.

Hi venice
I can’t advise you much as I am new to all this too and am still struggling just to understand all the acronyms. I was diagnosed last week and at present know very little about my cancer other than that it is 2 cm and they don’t think there is any spread. I am seeing the surgeon tomorrow about my lumpectomy. They are talking about radiation treatment follwed by Tamoxifen.
I doubt they are keeping anything back from you, I expect it takes them a while to reach conclusions as they gather all the evidence. But when is your next appointment? I am sure they will answer all your questions then. I suggest you start preparing a list so you don’t forget anything. Also, take someone with you. I was told I had bc last week and was by myself and it was all a bit traumatic. I wished I had someone with me. Tomorrow I have my sister with me so it should be easier.
Good luck and try not to panic.

Anne

Hi Venice. Also not able help with the letter or the cancer dx as I am still awaiting further tests and am living in the time between ignorance and diagnosis (or all clear!). It is rather rubbish to get the news on your 30th anniversary. I guess there never is a good time to hear awful news. Glad the op went well for you. You are through the first hurdle! Take courage. It is ok to be scared and worried and panicked. I am too and I don’t even have a reason to be. Sending you a big virtual hug. X

Hi Venice, please concentrate on the positives, no node involvement and clear margins are def positive!, I’m not that far along the road myself but although just had first chemo session yesterday, I feel so much better than at the stage your at so I really do understand how your feeling. When you see onc it will all be explained but please don’t worry too much about hormone results as there are excellent treatments whatever way it is, mine is invasive ductal as well grade 2 but 2/19 nodes affected, hence the chemo, but if you read some of the June and July threads you will see although not always easy it is doable, good luck and keep us posted how your doing Lynda x

Hi Venice, sorry you find yourself here along with the rest of us. I was diagnosed the same day as you and have surgery, scans and now awaiting oncology. Please try to be positive, everyones case is so individual and I have found that if I ask a question, I get the answer even if it is not the answer that I want. Once the initial shock has worn off you will find it gets easier and with the support with everyone on here, that helps a great deal. Please keep us posted and Take care x

Hi Venice
I’m a similar age to you (I think). I was dx at 56 and was originally told that it was 1cm, grade 2 with no nodes. After surgery 3.5cms, grade 3 and 3 nodes affected (and LVI). A huge difference (chemo!!). I was offered a trial, which I took after careful consideration.
To say that I was scared stiff would be an under statement. I was petrified.
Fast forward 5 years and I’m here, enjoying life, seeing the grandkids who’ve been born in the last 5 years, travelling and working through my bucket list.
The first year after dx wasn’t a picnic, but it was OK, and I’m still here (not as often).
Take care
Mal

Hi Venice, is a standard letter as regards you may be offered a clinical trial. Should there be one they will discuss it in full and it is totally your decision whether you take part or not. Always take time to consider carefullto that is what I did. They are very open with information, write down questions and go with someone, my hubby is great at filling in what I have heard but not computed sometimes x good luck and keep us posted X x
good luck and hugz to all x Kim

Hi Venice, I was diagnosed on June 3rd, had my op on June 13th and was told I had a 35mm lump grade 2 but they had removed with clear margins but had lymph node spread so have to have chemo which will start on Thursday.
You should write down anything your not sure about and I echo taking someone with you as most of what I was told didnt sink in at all. I asked questions or my daughter did and I now have leaflets and information sheets about everything so I can go back to them later to re-read. There is also lots of useful info both here and on the macmillan site.
Good luck and stay with us here so we can all help you on your journey xxx

hi apandy thanks for your reply my appt is friday 26th july my husband will be with me . I am sorry you got the news alone it is such a shock.Yes after my meltdown i agree i dont think anything is being kept back i am so glad i joined the forum as it already has helped me so much ladies sharing their experiences that are further on with treatment and those following. please keep posting

Hi ThinLizzie I do hope you get the all clear it is so horrible waiting when, do you get your results ? thankyou for posting and the virtual hug it is much needed it is so good to know there is lots of advice and support out there x

sorry have not got to grips with this site i have tried to reply individually but not worked . Just want to say thankyou to all the other ladies that have replied Mal you summed me up perfectly frightened of everything at present, so great to hear news like yours congrats on the grandchildren . Kimvon i will definately take your advice and keep you up dated .Coco that is a day we will never forget am at the same stage as you oncology appt friday cant believe i am talking about seeing oncologist and bc nurses and radiotherapy and chemo last month i was moaning about work and what the hell am i going to cook for tea my life has turned upside down . my friends and family are good and very supportive but they just have no idea of the turmoil and range of emotions you go through hour by hour never mind daily thats why i posted need this. Marion good luck thurs i will be thinking of you and Pollyanne hope your 1st chemo was ok 1 down let me know how you both getting on please . Pollyanne am definately concentrating on the positives as you have said thanks keep in touch love Gill

Gill I think the beauty of this site is that we are all in this together :slight_smile: not a club I am sure we ever thought we would be members of But such a source of information and support x whilst I am professionally informed I am on a straight forward treatment plan the emotional roller coaster is one I never thought I would experience. The last 10 weeks a whirlwind of surgery medication and current radiation but hey one day at a time !!! X x x hugz to all x

Venice good luck on Friday. It may help to take something to write with and on as you usually get a lot of information very quickly (all those strings of letters!!!). You have done well to take your Other Half- apart from the support of Being There for us, OH’s can be great for picking up on things we miss. It’s hard to listen well when we are so tense about what they are saying. But then, we are the patients not the carers! It’s the patient’s job to react! xxP

Hi Venice, will be thinking of you on Friday, had my first session went smoothly, have spent nicer afternoons but hey ho… Side effects so far have been pretty minimal, little queasiness bit dizzy on the evening I got home but that’s about it, think I might get the constipation tho…sadly nothing has happened on that front yet lol , keep us posted on how your doing and remember once you have all the facts you will feel loads better , tc x Lynda

Hi Venice,

I was given my hormone positive status at biopsy results meeting. Could you ring your BCN and ask her to clarify the situation? That is what she is there for. Better still, ask for a copy of your path report ( surgery results) or to go through it with you.

Good luck for future treatment.
Poemsgalore xxx

Hi Venice,

They aren’t holding anything back from you. Sometimes the Receptor tests are unclear and need second opinions. My advice is the same as Poems (above). Do ask for a copy of your surgey path report. All is revealed on there. They are unlikely to offer you a copy unless you ask.
Meanwhile, hold on to the fact you have a good diagnosis. Clear lymph nodes, clear margins, and no vascular invasion is brilliant news.

Hi Venice
Thanks for the kind wishes. I have not heard yet. I was supposed to get the date for my MRI guided biopsy this week but just found out the specialist is on holiday till next week. I’ll be on holiday the week after! So, won’t find out the date till after 9 Aug. It suits me as I didn’t want to have a bruised boob on holiday! Partly vanity and partly because I don’t want to explain to my 15 year old son yet what is happening and he’s bound to notice if I am wearing a bikini!
All the best for Friday xx

hi had my onc appt today all quite positive really as i had no node ivolvement clear margins and no LVI the main problem was that the grade had gone to 3. he did some calculations and said i had an 87% chance of being here in 10 years if i didnt have any treatment at all and 91% if i had chemo i am hormone positve both cant remember the letters and HER2 herceptin negative . i have opted for chemo (GULP ) and rads and hormone tablet after the chemo. i feel i have made the right decision as i would always be wondering if a little infected cell had broke loose and not been detected. I realise there are no guarantees but now want to get on with it so i will be an Amazing August if they will accept me. need plenty of support reassurance re chemo and side effects and advice please. Thankyou all for thinking about me today and sending lovely messages Gill x

Hi Gill,

Brilliant results, very positive indeed. Good luck with the chemo - I finished mine this week and found my side effects were mainly irritations rather than problems. It is all very manageable. xxx

Hi Gill
I’m so glad you found out the details of your cancer. I’m sure the Amazing August group will be only too happy to have you. The letters you mean are ER + (Oestrogen) and PR + (Progesterone). I was 100% ER positive and 70% PR positive, HER2 negative. I was also grade 3, but I had vascular invasion too. Like Lola I had chemo, the last one was May 23rd. It was nowhere near as bad as I expected it to be. Apart from a couple of minor side effects, I quite enjoyed the experience as the atmosphere in our chemo unit was relaxed and friendly and we all had a bit of a laugh with the chemo nurses. So wishing you well for when the treatment starts.

Here is a link to a booklet about chemo (on this site) which you can download free as a .PDF or simply read from within your browser.
www2.breastcancercare.org.uk/publications/treatment-side-effects/chemotherapy-breast-cancer-bcc17
Hope this helps.
Poemsgalore xx