Hi
After what feels like forever when in reality it has been 7 weeks from first core biopsy I finally have what I have felt in my gut since first being told ADH border line DCIS confirmation of DCIS. My biggest fear is that my gut will be right again and it is infact more serious. I am opting for a bilateral mastectomy although it appears to only be present in my right side. I have chosen this for many reasons but mainly due to family history although not yet gene tested, being 40, the mother of small children and a fear that I would not be able to overcome the anxiety of possibly having to repeat the process as another family member did. I was originally hoping that the mastectomies would also save me from radiotherapy and was hoping to have immediate reconstruction. I have since found this is not going to be the case as with every visit I am told nothing is for certain and just in case etc etc. I am finding the different opinions of medical professionals difficult and confusing. For someone who likes to always have a routine in place and plan for tomorrow this has been an incredibly difficult journey and I fear it has not yet even begun. I do feel better knowing at least surgery is booked although I am terrified of general anaesthetics and hospitals. I survived the anaesthetic of the surgical diagnostic biopsy so I am sure I will be fine :). If I was to be truly honest with myself it was easier than the vacuum assisted biopsy - 9 samples taken to get the same borderline result. If someone had told me last year I would need to have the tests done I have already completed I would have probably peed my pants :). I just like to be in control. I am praying I have a successful sentinel node biopsy and it has infact been caught early with nothing missed etc. I am in awe of the strength of women in general being a busy mum of small children managing everday challenges and even more so now since my journey begun reading blogs on this website and the kind lady who offered her own personal journey having only met me once for that purpose. If it wasn't for her I wouldn't have known of this website or the My Journey Pack she lent me to read. I have been treated both publicly and privately so thought I should of been told this information was available. I pray I will be a survivor and this is going to be a relatively short process and I then can be one of you fabulously strong women sharing your stories, with a real sense of hope supporting others at their own beginning. Turns out I haven't peed my pants yet so this could be a real possibility :).
FD xx
Comments
Hi FD, what a dreadfully long wait you have had to endure. It is so not fair that 7 weeks has lapsed and you still don't know for sure what you are dealing with. I guess they just want to be really sure before doing the mastectomies. If it is coming up as borderline DCIS, it has obviously been caught very early, which is good news for you, and the waiting, whilst hard on you, is unlikely to put you at risk of further spread, since it is contained. However, we all understand your anxiety, and the need to have a result, as we have all had to play that waiting game. My first wait was a week, but because I was told it looked only like a small cyst, I wasn't even the slightest bit worried, WRONG. The second wait, just prior
to my precautionary 2nd mastectomy, was 2 days, and this felt like the longest 2 days of my
life. This lump looked highly suspicious, but
turned out to be benign. I still went with the mastectomy though, as the anxiety about future
cancers that were invisible on mammograms
were too great. My bilateral reconstructions are
now complete (silicone), and I am happy. I have
had chemo, but no radiotherapy, and like you, I
really hoped to avoid it by choosing mastectomy,
and though the Dr couldn't be 100% without the
pathology report, he thought it unlikely that I would need it. I am taking Femara now for a
period of about 7 to 10 years, as my cancer was
heavily hormone positive. Good luck with all your
waiting, and I hope you get the answers you
need really soon. We are all here to support one another, and share anxieties and fears. It does
help alot. Love Chris xx
Thank you
Hi Chris
Thank you for your reply, yes I am praying it has been caught early. I have just lost some faith in what I am being told. I have gone from ADH borderline DCIS to just hyperplasia (impatient surgeon obviously pressed for time but I am told she has been reported to the Medical Director as I should have never been told that) back to ADH to confirmed DCIS. From the get go my treatment plan was to remove all risk by having bilateral mastectomies. Each medical professional I saw told me I was being extreme one even mentioned that they don't remove an arm for a lump. I couldn't believe she could compare the importance of an arm to a little saggy boob that was no longer required for child rearing. Now here I am being told the recommendation is a mastectomy of the right side due to the size of the area to the size of my breast. Not sure how others feel but I thought I was experiencing worst case scenario and had prepared myself mentally for that. Now to be told what I originally asked for is the suggested treatment plan is like learning all over again. It also makes me think it has in fact spread to the areas where I do feel pain (breast bone under my right breast and down my right side) I have seen a GP about this problem previously but I was told this is a common joint and muscle to experience pain. The thing is it doesn't ever go away. I only went for a mammogram, this was my first because a GP not my usual as she was on maternity leave decided it was a good idea now I am 40 and due to family history. I wasn't even the slightest bit worried so it really was a bolt out of the blue. To hear your story has helped me to think if chemo is necessary I should be able to do it. I still don't know if what I have is hormone dependant and nobody has mentioned taking medication after. I guess I will know more after the mastectomy surgeries booked for the 30th. I don't suppose you know if they do further pathologies on all the tissue removed?
Today is my husbands birthday so I had better go and spoil him.
Thanks again your story is one of those inspirational fabulous ladies I had in mind on my first post.
Lara xx
Waiting game
Hi FD,
My thoughts and prayers are with you at this time. 7 weeks is a long time to wait, whereas my initial diagnosis was a fast roller coaster with no time to think.
I do know waiting is harder, as I am now waiting for results and oncologist's decision on what future treatment I need following on from my brain tumour resection.
Hang in there, and I know it is easier said than done, try to be patient and focus on yourself while you wait and be kind to yourself, even if that is hard with a young family. It is time to put yourself first. They need you and the best you is well rested.
Take care,
Sonia :-)
Thank you
Hi Sonia,
Thank you for your reply. Your wait regarding your brain tumour must be agony. Only women could do this I am sure. To hear your story has given me the faith that if it has spread I will find the strength required just as all of you amazing women seem too.
Thanks again it really did help
You also take care
Lara xx
hi we are wating buddies
Hi just wanted to say your story is so close to mine, I was diagnosed with high grade DCIS on the 20th of March in left breast, and had a suspiscious area in right breast on MRI which they where unable to biopsy, I am having bilateral mastecomies on wed which is 9 weeks wait time arrrh, mine was a lot to do with the only surgeon able to do it away on leave from my area, and also Peter Mac cancelled about 5 appts on me which was heart breaking, I too have a strong family history so thats why I have opted to have them off, wouldnt it be great if we could get the genetic results back quickly so they could be included in our options I dont even have an appt till august for that, I will sent a contact request so will can keep in touch
hope all goes well Narelle xx
Thank you
Hi Narelle
Thank you for your reply. I am so sorry to hear of your wait and cancelled appointments. That I could not even comprehend. My surgery is booked for Wednesday 30th so I will be thinking of you also this Wednesday. The genetics testing people are due to make contact this Wednesday to find out my results. When I last spoke to them I was still diagnosed as borderline DCIS so they wanted to wait until after the surgical biopsy. I am not sure of the grade of mine as yet I was guessing I wouldl be told that after the mastectomies. It didn't even occur to me that information could already be available. Also whether or not it is hormone dependant etc.
All the very best for Wednesday I will be sending all of my love and strength your way...
Thanks again
Lara xx
All in this together
Hi FD
I was diagnosed 12 days ago completely out of left field. My GP picked it up on a routine breast exam, 2 days later I had mammo US and biopsy and 2 days after that was seeing the surgeon and oncologist.
This is a crazy freight train we are riding and one that can be scary at times.
I am a cancer nurse and have lost count of the amount of patients with breast cancer that I have treated. Knowledge can be a curse sometimes but even with the knowledge I get anxious about things.
My first excision had DCIS in the one of the margins so I have to go back for a re-excision. My sentinel nodes were clear but then I worry that the wrong ones were taken!
I have a kooky sense of humor and find it helps me get through. Also the thought of helping others helps me too. The girls here are wonderful, look after yourself and take all the support that you can.
xxx
Dan
PS
Lovey you are quite within your rights to seek a second opinion. You must be 100% and confident in your team. Obviously for rural and remote patients this becomes more difficult, but if you can, don't be afraid to go elsewhere and google your surgeon to see what comes up. Also if you can go to a surgeon who is a breast specialist not one who does boobs once a month.
Good luck babe xx
Thanks
Hi thanks for the advice, yes I did get a second opinion which led me to my third surgeon. The second one (public) couldn't get me in soon enough and didn't want me to wait so I requested to go private. I did google him, I google everything - bit of a control freak who likes to be in control and know what is going on. Sometimes it helps but as you have said there is alot of crap out there. This one does seem to be extremely qualified although very young just like the anaesthetist I had for my diagnostic biopsy. Freaks me out that I am now older than my medical professionals - when the hell did that happen :). I hope you are recovering well and get the results you deserve. Lara xx
Sending you a 'Big Hug'
Lara
Cry heaps, believe it or not it helps. I think I cried every day for the first 4 to 6 weeks after I was diagnosed. I still cry now even though I know what to expect.
Once you have your surgery everything will settle down. You will have a plan for treatment and then it's a matter of taking one day at a time. I found out the results about my BC when I visited the surgeon after I had my lump and 3 nodes removed. I didn't listen or want to know what was happening. So take someone with you.. it wasn't till last week that I went back to my GP to get her to explain. So take your time.
I've had my first round of Chemo and have my second this Thursday. I'm having a total of 18 weeks Chemo and then radium...plus the hormone blocking tablets for 5 years. Remember it's 'Early Breast Cancer' and you will get through it. Some one told me it is like a game of 'Snakes and Ladders'.. ups and downs...but eventually you will get there.
Sending you a 'big hug'.. and keep blogging. There are many people here for you and what you write helps others.
Trina
Thanks
Hi Trina
Thanks for your big hug, all this blogging does make me feel better. Doesn't seem to matter whether I am writing or reading I do feel like I get something out of it.
I am a crazy bugger, I like to attend all appointments on my own. It drives my mum and family crazy but it gives me the time and space to absorb what I am being told before I have to answer everyone elses questions and deal with their reactions.
I hope your second round of chemo went as planned and your are not feeling too horrible, just in case I am sending you a big hug back :).
Take care
Lara x