Hi everyone,
A recent mammogram identified a 13cm area of microcalcifications. Someone in radiology quickly pushed the red button because they immediately escorted me to ultrasound and tried to biopsy it. When this failed, the consultant indicated that he suspected the microcalcifications were DCIS and he booked me in for a sterotactic biopsy followed by a rapid results out-patient appointment later this week. The last few weeks have been a whirlwind of different appointments and taken time for all the information to sink in, but now that it has and following additional research I am beginning to get very worried. I seem to be unusual in having such a large affected area and I fear that the cancer may have had time to spread beyond the tubes resulting in IDC. If this is the case it looks like a MX, radiotherapy and chemotherapy.
It is my left breast that is affected and I am also left handed. I really cannot afford to lose movement in this arm and dread getting lymphodaema(My husband has this following a previous surgery and it has been a real pain).
Has anyone had a similar experience? All comments welcome
Scilla, it is very difficult not to fear the worst while waiting for results. I’m sorry you have to wait for a further biopsy. But don’t count your disasters before they arrive. Size is not the only factor; the nature of the cells in the tumours is another. IF you have to have a mastectomy you will get advice about exercise and other ways of reducing the risk of lymphodoema. It’s natural that you are worried about this following your husband’s experience.
Try to occupy your mind with other things and don’t google too much; stick with reputable sites like this one, and remember that the dramatic and unusual gets more than its fair share of online attention. People who sail through minimal treatment are mostly busy doing other things.
Best wishes
Cheryl
hi,
This waiting for results is horrid, first the sledgehammer blow that you have cancer and then the whirlwind of tests and then times in between waiting for tests.
when you say following additional research you fear the cancer might have spread, do you mean additional tests at the hospital and the doctors have told you it might not be DCIS, or do you mean that like the rest of us you have googled for more information and now this is what you are worried about??
Medics nowadays tell you at every stage and after every set of results what they think the information they have means. If the last time they saw you they said it was DCIS then hang onto that.
Wether its a lumpectomy or a mx, people do seem to get movement back in their arms surprisingly quickly. Did they give your husband exercises after his surgery? did he do them? did he look afterhimself properly–men tend not to. If movement is important to you I am sure you will take all the advice the surgery team give you on board and look after yourself so that you recover as quickly as possible. There is even one thread on here that suggest if you do excercises before surgery you strengthen that area and there fore it recovers quickly. ( i only had WLE but have almost full movement and stregnth after 10 days and have been given go ahead to drive after 14) wouldnt like to walk the dogs for a bit or dig the garden but i am getting there)
You can ring the helpliine if you are worried. Or better still have they given you a breast nurse. she can drag out all your results so far and go over them with you again. It is all so much to take in at the appointment. I rang mine up when i suddenly remembered something that the doctor had said and she clear that up for me.
At least you found this site–i suspect you were up at midnight googling trying to find out info. Everybody is very supportive, they will answer any question at all, or just give support when you are falling apart, or join in when things make you angry.
Hi Scilla,
Cross every bridge when you come to it! It is a waste of precious energy worrying about something that you don’t yet have or need. I know it’s easy to say and no-where as easy to do but it really is a case of take one day and one appointment at a time.
I find that this site has a lot to read about the negatives which is fantastic to know that you are not on your own, how to cope with certains SE’s, to compare yourself to others etc. But of course this can lead to focussing on the worst!
I had a WLE and SNB at the end of May - I have absolutely no loss of movement, sensation or strength in my arm. I was moving about as usual the day after surgery (despite all of my OH’s moaning)- in fact I was enjoying a lovely chinese feast the same night as my op.
My best advice about finding out information is to only research what you are definitely having done - reading about everything will send your mind into a spin - focus on the necessary.
I’m starting chemo on Friday, then it’s radio, herceptin and tamoxifen…it’s a long journey, it’s a tough journey, but it’s one that must be travelled and you’ll have a lot of companions to keep you company (if you need it!)
gosh, some people recover very quickly. Perhaps its age,or is it that different people react differently to anasthetic? I was totally wiped out for a week after surgery and am still not up to full speed now that it is two weeks. Not ill, or in pain, just exhausted and not firing on all cylinders.
Hi,
I also have DCIS and they found 4 invasive cells-no spread.You will be bale to us eyour arm very quickly.I had my op in 9th april and now can do everything. worrying doesnt help, look positive.
Hi Scilla,
Do try not to worry too much although I know you will. Just to reassure you, I had many areas of DCIS over an area of 11cm and had to have a mastectomy. Chose to have immediate diep recon and was really lucky as my sentinel node biopsy was clear. Results were only DCIS with no invasive cancer what so ever to the absolute surprise of my surgeon.
I to am left handed having had a left mastectomy. I never lost any use of my arm and could do everything, although a little sore, from the following day after my surgery.
I was also fortunate not to have any chemo or rads due to the non invasive nature of the disease. So every cloud has a “silver lining” so to speak, so please don’t worry too much, it could all work out not too bad.
Let us know how you get on.
Marjay
Hi there, just to try and reassure you that size doesnt always matter. Marjay had an area of DCIS 11 cms with no invasive at all, and thats a large area. I had a much smaller area of 4.5 cms DCIS and did have invasive cancer. My nodes were clear though. My DCIS was high grade and the kind that changes quicker than low grade or indeterminate, so there is a good chance yours wont have changed, and even if it has there is a very good chance alot of it wont be invasive. The good thing about DCIS is it can’t spread until it becomes invasive, which is a plus point.
I am with you Old and Lumpy in being floored by surgery. I have had a lot of generals over the last year or so and am exhausted, but I do have full movement in my arm.
Keep on posting as this place is brilliant for support and good luck.
Hi everyone,
Thank you for your comments and words of reassurance.
I have an appointment with my consultant in the rapid results clinic tomorrow. I am hoping for the best, but fearing the worst. Although I am trying to do other things, it is difficult to concentrate on anything other than tomorrow. I don’t know what to expect after the consultant gives me the results of the biopsy. I suspect the appointment will go quickly and I will not think to ask the right questions until I am out of the door and it is too late. It is not easy to have an informed discussion when the language is new and you are not an expert in breast cancer
Will there be other tests? Will I be expected to make any decisions related to my treatment and what are other peoples experiences of this time? What is the approx length of time before any surgery? - they did make it clear that surgery would be required.
chocciemuffin will be along soon, but I am going to steal her thunder. Get pen and paper and start writing queastions down now. Are you going to the appointment alone? if not get the other person to help by ticking of the quesstion and telling you if some have been forgotten.
if its like my clinic they will have had all your results for a couple of days and will have had a team meeting before your appointment and gone over what they think the best treatment is. They will probably try and schedule your operation in with you at the appointment–so take your diary. I know you want it out asap, but if you have a wedding or an important thing you dont want to miss its worth mentioning. A week might not matter.i think how far away it is depends on theatre availablity and what type of canceer it is. some people talk about 2 weeks, mine was 4.
the other thing to say is that all clinics are different but after my appointment with the consultant the breast nurse took me off to make sure i had completely understood what was going on and to smother me with leaflets. So you can ask her things that suddenly come to mind.
hope you get some sleep tonight and fingers crossed for tomorrow
Hi Scilla, I had DCIS despite being told my tiny area of calcifications was probably nothing, and after an initial WLE it was discovered that I had a large area of high grade DCIS so I had a mx. Owing to family hx and lifestyle and the general invisibility of my DCIS I opted to have bilateral mx. I was lucky that the DCIS wasn’t invasive, so I didn’t have to have any more treatment.
My movement was restricted for a while, but I’m now back to pretty much normal after 4 months. My mum had her nodes cleared too, and she can also move her arm well.
You’ve got good advice on here - you really can’t pre-empt what you’ve got you have to take it as it comes. It’s very hard to do, but try not to keep looking stuff up till you know exactly what you’re dealing with - it just makes everything more scary.
Lots of luck tomorrow, thinking of you
xx
Hi everyone,
Well the results are in and I’m now navigating the world of breast cancer treatment.
As suspected the consultant found his area of DCIS - multifocal with intermediate and high grade cells to be precise. Consequently, I was quickly scheduled for a MX and sentinel node biopsy which will take place on Wed 10th Aug.
Initially, I thought I handled it all well, but as the surgery looms ever closer I feel myself going into panic mode and feeling as if I’m on a runaway train and cannot escape. The sensible side of me is telling me to kick the cancer into touch and to hell with the surgery, but the emotional side is already thinking about disfigurement, complications, additional treatment (I sincerely hope not - crossing all fingers and toes)and mourning the loss of my poor affected breast and lymphatic drainage. What did my body do to deserve this treatment? - s***ing cancer
It’s not even as though I can have immediate reconstruction. Apparently my BMI is too high for them to consider additional surgery. So, in addition to a MX, I am looking forwards to serious dieting (I’ve never been very good at this), followed by reconstruction (not sure what type to go for)and eventually ending up with a breast reduction on the healthy side. This is all without thinking about the possibility of additional treatment(still keeping fingers and toes crossed). I’m beginning to think someone somewhere does not like me.
Sorry to sound off, but I feel very upset and alone at the moment.
Hi Scilla, sorry you are feeling so sad. Hopefully using this forum will make you feel less alone. Its good to know people here really understand how you are feeling. I had a MX in June for a large area od DCIS and all has healed very nicely now, so try not to think about the complications, they may not occur. Sending you a big hug xxx
Thanks for the kind words girls,
Having been shown pictures of mastectomies some of which were really shocking, it’s good to hear of your positive experiences. I’m quite full breasted and have heard that more complications can arise if this is the case plus the finished result may not be as neat (inc chance of infections, irregular scarring, muffin tops and dog ears). I am trying not to panic and to be positive, but deep down I know the operation will change me and I’m unsure that I will like the new me.