Hi, just got home from the breast clinic and have been told they suspect I have breast cancer again. I had lobular breast cancer in 2018, had lumpectomy, then another to give clear margins, followed by 23 sessions of radiotherapy and reconstruction that finished last year.
So here I am again, waiting for the biopsy results but have been told it’s almost certainly breast cancer again. I was wondering if you don’t have to wait as long for the results if they are pretty certain of the results, would they rush them through? Usually I receive a 2 week appointment for the results but this time I’ve been told they will ring me with an appointment as soon as possible.
Has anyone else been in the same situation and how long did they have to wait.
Obviously I’m devastated but trying to remain strong and keeping my fingers crossed it’s not spread.
Dear Sue, I’m so sorry you are going through so much stress at the moment, hopefully they will be in touch very soon with results and a plan for you. Everything seems to be taking so much time, which doesn’t help you. Take one day at a time, keep busy all very easy for me to say.
I do wish you well, I wish I could be more helpful, but it’s a waiting game. Health and happiness going forward.
Eight years on not a very nice Christmas present. I had nineteen years between but at least I found a lump in June and had surgery in September. Mine is ductal. Lobular can be sneakier.
I don’t have any answers but I feel for you. I have just had an MRI and I am not keen on any of them. I was asked whether I was taking viagra at one scan and said loudly I am a woman! I do not have a penis! It turned out viagra is used as a heart medication…
I would advise take one day at a time or even one minute at a time. Ask questions and have someone with you to take down the answers. Otherwise record them on your phone.
I also do not agree to any procedure without information - this may delay things but there is no need to rush madly into anything just to meet government targets. By the time you get a big enough lump to feel it it’s been there ages but that does not mean you are going to expire immediately if you don’t make an instant decision to do something or have something done to you.
Well this is just my view so you can take it or leave it. I am 70 now. I was diagnosed first at 48 and second at 67
Seagulls, thank you so much for your message. The Viagra situation made me laugh, like you I wouldn’t have known that either.
How are you? How did your op go? What’s the next step for you? Did you have Ductal both times?
After having reconstruction because I had a large lump and after 2 operations my breast was 2 cup sizes smaller than my right breast, so I had several reconstruction surgeries which failed, so I’m left with a dense breast full of lumps, fat necrosis, at least 9 my doctor counted, and cysts, so I had already requested a mastectomy because I no longer felt safe checking my breast. So for me now I definitely want it gone and I’m hoping they will provide this option. I might even ask for a double mastectomy.
Sorry I’m rambling. I will take it one day at a time but will feel happier when I know what we are dealing with and a plan in place.
It really does help to get replies and speak to people that have been through the same as you and know how you are feeling.
I am glad you appreciated my words of comfort. I have had so many kind words over the years and the odd vicious one but I am sitting here in warm sun on a late November day and things could be worse.
When I had breast cancer in 2018 I was told it was Lobular breast cancer, tricky to find, stage 2, that was it, I remember coming on here and people saying they got a report given to them etc. I did feel I wasn’t given much information apart from a couple of leaflets which meant I had to find the information out for myself. This time I want to be prepared, I want to know everything. Is there anything you would ask about if it was you going in to get your results?
Are CT scans better for finding out if cancers have spread? Just wondering why I will have a CT scan when some others have had MRI’s, what’s the difference?
Hello sue, as far as I understand with me, I was offered an MRI because of my age (I am 39) and because I have very dense boobs. They picked up 2 different patches on the MRI that the ultrasound and mammogram didn’t see so it worked. It could be that different boobs need different machines. I am a real newbie here though so I’m just guessing.
As you say its good to be well informed. The more they can find out, the better they can treat us.
Thank you for your reply. My breasts are dense too, especially the one with cancer in because it’s the same one that had it in 2018 due to 2 operations, radiotherapy and reconstruction ,so I actually thought that’s why I might need a CT scan but it doesn’t look like it does it. I’ll do some research to try to find out.
I am doing ok thank you. Riding the rollercoaster daily. I’m so sorry you find yourself back here again. I hope you can find some comfort in the fact that things are so treatable now! That’s what they keep repeating to me anyway haha
How are you today?
They have an Ask Our Nurses section on this forum, I’m sure they will have some good information
I’m doing okay thank you. My family are all coming around on Saturday which will help a lot.
I’ll check the nurses section out, thank you.
Yes, one day at all time. When I was originally diagnosed in 2018, I never dreamt that I would still be having some form of treatment in 2024, the epidemic really delayed things but I thought once they had removed it that would be it, how wrong was I lol. I will say it was an okay journey though, not as bad as it could have been so I’m hoping the same this time.
Breast Cancer Care has a leaflet on how to read your pathology report so ask them to send you a copy or pick one up at you hospital if they have them there.
I have just seen your post. It is so tough being back in again for more diagnosis and treatment. So unfortunate with the pandemic delays.
I am a fellow Stage2 lobular gal. Diagnosed Oct 24. I can only imagine how hard it is with this reoccurrence after 8 years but it is wonderful you are reaching out and being both vulnerable and strong.
The reconstruction sounds really upsetting and disappointing so I can see why mastectomy seems a potentially viable option.
I definitely, as others have said, suggest asking for the full pathology report from 2018. I had to ask the oncologist for mine. It helps with onco scores, gradings and thus our understanding and made me feel more in control of the facts and situation.
Was there spread into the lymph nodes originally and is the cancer hormone receptive?
With my story, in the end, after many tears, I decided on a mastectomy to reduce the risk of further spread and then an elective mastectomy of the other clear breast 7 months later. However it turned out not to be clear, with LCIS present, which did not show on the MRI. So I made the right decision. I now really like being flat. It feels freeing though clearly a personal option.
I am thinking of you and hope you have some clearer news soon x
Hi, thank you for your message. Do you think that I will need the pathology report from 2018 to understand what’s going on now? I will definitely ask for this one.
When I had Lobular BC I had no lymph nodes involved, they just removed the sentinel nodes. I was told the cancer was very close to the chest wall and that’s why I had to have 23 sessions of radiotherapy because they were struggling to remove the whole of the cancer and get clear margins, now I find this new possible cancer against my chest wall again but at 12 o’clock and not 3 o’clock.
I have checked my hospital account today and I have been given an appointment on the 16th December in the Macmillan suite which is where I met my Oncologist last time, so I guess this pretty much confirms their suspicions doesn’t it. I really hope I don’t have to wait until then for my results. Last time the breast clinic gave me the results. I’m a bit concerned that they are planning ahead because they need to get rid of the cancer quickly but I’m sure I’m over thinking it.
Good morning ladies, I hope you are all doing okay?
Just a quick update. I rang the breast clinic yesterday about the appointment on the 16th December to make sure I will be getting my results before then and was told that the appointment is for me to get the results, I asked if they could tell me over the phone and was told they only ring people if it’s not cancer. They said when they suspect it’s cancer they want to see me face to face and this was their earliest appointment .
So I have a bit of a wait. Do you think they will have a plan by then? I can’t remember if they told me both at my first appointment or if they made another appointment with the plan going forward.
This is the worst part isnt it I really feel for you @SueDerb
I think its impossible to say ad there are so many different factors. In general here it take 3 weeks to get our results back. In my case the appointment after my initial biopsies I thought I would be getting a diagnosis and a treatment plan straight away but they ended up needing to do more biopsies and so it meant more waiting. They were kind enough to bring me in early though so I only then had been waiting an extra 2 weeks. And even at that appointment they were still waiting on more results from the biopsy so I still had to go back in a week later.
It’s just not a straight line this journey
Maybe give your breast care team a call once or twice in the week and try to grab a cancelled appointment. It cant hurt to try haha
I am sorry you have found yourself on this forum but hopefully the support, shared experiences and sage advice will help get you through I’ve found it invaluable
I had an MRI my mr breasts and then a CT scan.
The MRI helped to determine the size of my cancer (DCIS & IDC). What was in two areas on the mammogram, the largest being 18mm transpired to more widespread and scattered throughout the breast. It also showed two indeterminate areas in the other breast which after biopsies revealed two other small areas of DCIS.
The CT scan is sometimes referred to as a baseline scan as it is the first one and subsequent scans can be compared to it to determine if there are changes. It is also called a staging scan when they are looking to see if there is evidence of cancer elsewhere in the body.
Hope this doesn’t sound too scary. I looked at it as a very thorough fact finding mission and once the team had all the information they were able to decide on the best course of treatment specifically for me. X
Thank you for replying and sharing all that information, as you know, everything helps doesn’t it.
People are asking me will I get what type of breast cancer it is and grade etc but I just can’t remember if they just told me at the first meeting that they can confirm it’s breast cancer, the type but that’s about it, I think I was told I was having a lumpectomy but I think that’s it. I guess every case is different.
Finding out just before Christmas is sure to delay everything with a shortage of staff etc. I just want a plan in place as soon as possible because I do remember that once the plan is in place things for moving quite quickly.
Today has finally arrived, the day before confirmation of breast cancer. It’s been a long wait with a lot of worrying and what if’s. I’ve accepted it is breast cancer again because they would have called me to say it’s not, especially as they told me it’s almost certainly breast cancer.
So here I am again, wondering what to expect, I know I should know but it’s been 8 years since my last diagnosis and a lots happened since then. Will I just be told what type it is and the plan to remove it? I was told I’d need a CT scan so I’m guessing that will be soon.
Are there any questions you think I should ask. Last time I remember coming out and family members asking me questions I should have asked but didn’t. I think I will have a Mastectomy, due to BC in the same breast, also after having 2 ops, 23 sessions of radiotherapy and 3 reconstruction operations, my poor boob is 2 cups sizes smaller than my good breast. So are there any questions around mastectomy I should ask.
