Hi, I’ve posted before about the long wait time (diagnosed early Dec) and my choice dilemma between lumpectomy or mastectomy, and thanks to all who replied.
Today however I’ve been knocked sideways. Met with consultant for result of my MRI scan (had it just before new year) and was told my original ultra sounded (in November) Lobular 14mm tumour is now showing up on the MRI as 16mm and has a nearby companion of 13mm, along with a couple of “suspicious” nodes clustering in the breast.
The option for a lumpectomy which I was given in December and told to think about is no longer possible. And the message has now moved on to mastectomy, possible chemo and radiotherapy depending on what’s discovered in lymph nodes when the mastectomy is done.
I’m floored. Had got my head round “I have cancer, but there’s a way forward” over the last few weeks but now I just feel that it’s bad news every step of the way. I’m finding it hard to stay positive and focus on treatment being a “cure”.
I just don’t know where this going and every time I add a new bit of info to the predictive models my long term survival rates decreases.
I really need to turn a corner but can’t see one at the moment.
Hi bee2
I feel your anguish mine was recommended a lumpectomy but had a double masectomy on the 20 th December with reconstruction It has been 3 weeks now and recovering really well I have a few questions with the expanders that was put in place but other than that I am ok I c off of co codamol after a week and was then on paracetamol and ibuprofen for a week now I have nothing it’s just an uncomfortable feeling really they did a biopsy on eash side of the main lymph sentinel node and took 1 lymph glands from each my histology will be revealed on Monday the 15 th Jan I have a slight bruise on my left but have had worse bruises where I have knocked in to things …please remain hopeful and calm and important to let your body rest before your op as well as after that was really good advice that I was recommended to me I am taking one day at a time yes I’m worried about Monday but everyday I feel a step further to beating this and will take on what it throws …
You’ve got this bee2 xx
Bless your heart. This whole thing really sucks and I completely understand your stress, sheer worry and frustration.
However to make you feel slightly better, I was also diagnosed with lobular about 14 months ago and have since read up so much about it.
Firstly it’s much more common for lobular to have “companions” than ductal so please try not to be too alarmed.
Lobular also tends to be very hormone positive (which is a good thing) and generally slow growing. It also tends to be larger than what is shown on scans (it’s more “spider” like, rather than clump like so tends to measure more but that’s because it’s not formed as a clump).
Again, try not to be alarmed by this.
I had a 36mm tumour and had a mastectomy with immediate reconstruction (nipple sparing one). I don’t regret it at all.
I recovered really well and my new breast looks amazing. I even did the other one a year later to match up (and act as a preventative too).
I guess what I am trying to say is please don’t worry because you are on the road to cure and a mastectomy is very doable.
However; I know how awful this stage is whilst still waiting for full answers.
We are all here for you, we all know exactly how this feels but I promise it does get better once you are on a firm plan.
I’m sorry to hear this.
Although I can relate.
Initially one lump found that was small. And after ultrasounds and MRI 3 lumps discovered.
So had to have mastectomy which came as massive shock.
I’m nearly finished with chemo (that was another huge shock).
I feel as others have said, that once you have a treatment plan you can begin to move forward a little.
Hugs x
I am really sorry to hear this. This is such a horrible situation to be in and I think the waiting and all the additional tests are the worst. I genuinely think that reducing waiting and carrying out all the steps quickly should be a priority for the NHS. Dragging things out is such a cruel process. I hope that they are able to swiftly put a treatment plan together so that you can start to feel like things are moving forward and you can stop being in this limbo.
My heart goes out to you, this is such a difficult time, but I agree with all the other replies that you had on this post thing taking one day at a time. At the moment you will get your head round this once you get a plan in place is always such a great shock, but hopefully things will settle down very soon for you.
I think so, many of us can relate to you. We start off with something quite doable and then it escalates.
Take good care of yourself try to rest a little and eat good food. I know all this easy said than done. I do wish you well going forward please come back and let us know how you’re doing.
I understand completely how you feel.
I was refered by my gp when I found a lump. The ultrasound at the breast clinic showed another lump in the oppsite side too. My immediate thought was I just want it all out, take the whole breast off. The consultant said I’d need a mastectomy as I had invasive ductal. I didn’t expect to be told chemo and very probably radiotherapy too, but I am prepared to throw everything at it. I don’t want to regret what I haven’t done in a few years.
It really is a scary time. All sorts of emotions are going on that only someone who has been in your position can truly understand. One of my friends introduced me to her friend who had mastectomy and chemo 20 years ago before my chemo started in Dec. We had a good chat which helped me. She really does look amazing.
She gave me lots of practical hints. She checks in with me from time to time, and our mutual friend checks up with me very often as she is more aware of what I’m experiencing after being part of our chat. Also my sister in law regularly checks up on me as she was helping her daughter get through bc 3 years ago and witnessed 1st hand what is involved. She sent me a big bar of Dairy Milk in the post yesterday. The postage must have cost far more than the item!
Just make sure that you take up offers of help, meet up with friends etc. Don’t hide away. Cancer may be on your mind constantly, but you can still have a life x
Dear Ladies, you are wonderful !
Thank you so much for taking the time to send your best wishes and your reassurances. It’s a real comfort to talk with people who “get it”. Everyone around me is supportive but not experiencing it and this forum is such a real help.
Btw, I’m 64 and in the UK, from reading your replies I think you’re also UK based.
Yep, without a doubt, the long drag of getting all the various tests is draining, I do wish they could all be done over a few days and then have a consultation with all the info and diagnosis - this drip feeding of new information every couple of weeks is wearing and seems all downhill. But, at least now I have a decision on the surgery and a date, early Feb. I’ve come to terms with mastectomy, anything to be rid of cancer ! and I’m just about to buy post op bras and a heart cushion which in a very peculiar way feels like a positive move ! I think it’s because something is happening.
I’m also up for throwing everything at it. My results show it’s ER+ and Her2-ve so have been told I’ll be having Letrozole too but that will need to wait until after the chemo/rads decision and treatment has been sorted.
So, for now it’s a case of see what comes of the operation and lymph biopsies and then head off into chemo and/or radiotherapy. I now know they are both on the cards so can get myself geared up. I think very large chocolate bars will feature in my plan !
You’re all right, it’s one step at a time and that’s what I need to focus on. Thank you.
And Sammie, hoping all goes very well for you on the 15th, will be thinking of you.
I hope you can see from the replies that you are definitely not alone and many of us have been in a similar position so just hoping my adding my wee story reinforces that the waiting is the worst and gives you some more positivity. I was diagnosed with LBC may last year initially thought to be very small and was all prepared for lumpectomy but after MRI it was much larger and turned out to be multi focal and 8cm in total so had no option other than mastectomy. I had right mastectomy with a reconstruction procedure called Goldilocks and reduction in my other side. Recovered very well and quickly after op. No lymph node involved and my oncotype score was 3 so didn’t have chemo just 5 doses of radiotherapy which again no real side effects and now on letrozole. In the end I was actually glad to have all the breast tissue taken as it reduced my anxiety a little about missing any bits and have the best boobs I have ever had. Xxx
Hello all - just joined the group and so glad I have as these posts have given me so much hope and reassurance that I (we) are not alone. I was diagnosed on 6/11/23 with Invasive lobular cancer, had WLE on 24/11 and 5 lymph nodes removed, results showed removal of tumour but 3/5 lymph nodes showed cancer so then I had a further shave (for clear margins) and full arm lymph node removal on 27/12. Results as at Friday all lymph nodes clear but some very very small foci showing cancer - so now looking at a mastectomy. The plan is to start chemo asap and then have the surgery. It’s so nerve wracking and confusing but reading these posts really has helped settle my nerves (at least for now) and helped me prepare for my oncologist appointment tomorrow - thank you
Welcome gsd1007
Very true your not alone
You sound amazingly strong
I generally am but sometimes I have a wobble but this forum is amazing and has helped me so much too For you on result day mine is tomos
So sorry to read your post, you’ve joined the club which you didn’t want to be in but I can assure you. He will have lots of love and support from this forum.
I would like to wish you lots of luck for tomorrow please come back and let us know how you’re getting on. We are all here for you.
Hi gsd1007, hope all went well today with your oncologist.
Mine too is lobular and although was hoping for a WLE it’s turned out to be a mastectomy, scheduled for early Feb. I’ve been told I’ll def be on Letrozole for min 5 years. After the op I may need chemo and radiotherapy too, all depending on what they find. The lymph nodes seem to be the deciding factor.
And Sammie, hope all’s gone well with your appointment too.
Hi bee2
And everyone
I am feeling very blessed that my results are in for the lymph nodes and are all clear I am waiting on the results still for the tumors and have been told may have to have chemo so hopefully know once they come back from California ( weird they get tested that far away would like to know more on that if anyone knows similar that’s happened to them )
So my right breast is ok which was stage 1 ductal but the left was lobular and it’s on that one they are looking at seeing the oncologist next week …my double masectomy was on the 20 th December so nearly 4 weeks in I have/am recovering really well from this I had immediate tissue expanders they do look amazing and so glad of my choice
Xx
I don’t know why the tumour samples have to go to USA for testing, my breast surgeon told me that’s where they go but I never thought to ask why. Was too occupied with the OMG I’ve got cancer thoughts at the time
My bit of good news is that I was asked yesterday if I was available a week earlier for my op - was reassured not for any sinister reason, just a scheduling opportunity - given that since being diagnosed I’ve virtually camped outside the breast nurse’s desk constantly asking to be done asap, they already knew the answer! So, I’m now on for 29th Jan.
Pleased to hear you’re happy with the expanders Sammie, you had a few queries but sounds like all’s been resolved. Mine’s a single mastectomy and I’ve opted for flat. I’ll see where I go from there.
I got the same info as you with regards to what next (mine is similar to your left one, I’m lobular, grade 2, ER+ve, Her2-ve, but know nothing about the stage, yet) and was told depending on lymph node analysis and the USA onco test (if appropriate) I may need radiotherapy and/or chemo. It’s still options and alternatives for me but looking forward to the op (did I just say that !) and getting things nailed down a bit more so treatment can begin.
One thing I’ve been told for sure is as I’m ER+ve I’ll be on Letrozole - you had any news on hormone therapy Sammie ?
Enjoy your good news Sammie, and everything’s crossed for the results ! xx
Hi bee2
Thankyou
That’s funny I am the same I didn’t think to ask him why biopsies get sent there
I am so pleased that it will be earlier because like the way you think I was the same and I am healing really well but feel I’ve only had a bit of the journey so far it seems it’s week by week atm but hope to know my treatment plan by next week xx
Take care and remember rest before the surgery as that helps too
I just wanted to let you know what my surgeon said about the Onco testing in California.
I didn’t ask the question, as my brain was too busy but my husband had this thought pop into his head.
It’s just to do with cost as it’s more cost effective to send a package of hundreds of samples than setting up a lab here in the uk with all the costs involved.
Hi Everyone
Have you heard about the Facebook support group Breast Friends. Search for whatever county you live in. I’m in Suffolk. They are all amazing ladies, just like the ones here. They arrange meet ups near you! Also you will find someone close by to talk face to face over a coffee. Hope this helps
