New BC diagnosis & feeling overwhelmed with information
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12 posts since
14 Aug 2020
Hi Everyone
Hoping someone could give me some advice, information and set my mind at rest! (Long story, so I will say sorry)
Im 43 and I have just been diagnosed officially with Breast Cancer. I was told that I had cancer 13th August, from the mammogram and ultrasound, but I had to wait until the biopsy to confirm the type etc. That happened last night. I have been given a lot of information, and feeling very overwhelmed with everything, but feeling a lot better now I have some idea of whats about to happen. I was hoping some of you may understand some of the procedures, and explain them from a personal point of view, rather than the clinical point of view. I appreciate my story/experience will be different, as all our treatment is personal to ourselves. But knowing what to expect, from a patient I feel may help me.
What I know so far is the following:- I have a 2cm by 2cm lump in my lower left hand side of my breast, which is confirmed as Invasive Ductal Cancer. It is confirmed as grade 3. On examination, my consultant thinks it maybe bigger, nearer 3cm. But she is a little unsure. The lump is usual very soft of squishy, and currently a little swollen and harder from biopsy still. But I do not have my HER result. The scans and examination so far has shown no issues in my lymph nodes. I need to return to see my consultant on 27th Aug for HER Result, and to finalise my start of treatment.
The current plan is, if the HER status is negative, then I am to have a LICAP flap, lumpectomy and reconstruction, which has been fully explained to me. And Lymph nodes removal on same day to check for spread To perform the Lymph node removal, they need to inject me with blue dye, through or near my nipple, which will show up the nodes. By all accounts this will turn me blue? As long as the nodes are clear, and they get clear margins, then its radiotherapy and tablets for 5-10 years.
If the HER is positive, its chemo to shrink the cancer, then the LICAP Flap, etc.
And depending on the Lymph nodes status, treatment will be discussed when we know something.
My consultant sounded very positive, but it was all very clinical.
Next was the breast care nurse. She was lovely, and went through all my notes. She said what is planned is aimed to cure the cancer, so very positive news. And I asked her about the stage the cancer was. The BCN said, we didn’t have a full picture, which I do understand. But based on the size, and the initial scans on lymph nodes being clear, she estimates a stage one cancer. But stressed it could change depending on biopsy on my nodes
I was hoping that some of you may have had these procedures, and talk me through them a little, from a patient point of view. And give me a little reassurance on what to expect.
Thanks in advance xxx
11 posts since
17 Aug 2020
Hi. I’m sorry you have been diagnosed with BC but its good that u will now get the appropriate treatment.
I also have invasive ducal cancer , though I was a grade 2 and the tumour was 15mm. I had a wide local excision to remove it with a margin of tissue that thankfully was clear. They gave me the radiation tracer the first thing on the day of the op and once I was on the table they injected me with the blue dye. You don’t turn blue, I never anyway , I peed blue/green for a couple days that’s all. I can only warn you about the dressings, the ones they used on me actually burned me and caused a reaction to the skin below. To much so I told my bcn who advised me to see my gap in case of infection in the cut,but as it turned out it was an allergy to The dressings which I found out yesterday had been reported by others that saw the follow up doctor yesterday.
It will Starr to happen fast. So get some rest and I’m here if you need to talk or vent lol x
12 posts since
14 Aug 2020
Veroni1
Thanku so much for you response! You honestly don’t know how much it means to me. I posted on the Macmillan forum last night, and received no responses. Then spoke to HR at work today, and it made me realise, how much I don’t actually still know. Suddenly I felt very alone and isolated. Apart from a few people, I have chosen to tell nobody, until I have a clearer picture of what may happening. And so I’m back to waiting another week. Hence me posting on here this morning! So Thanku xx
i hope you are doing well, and recovering well from your op! Thanku for your advise, and making me feel less alone! X
9 posts since
4 May 2020
Hi Kelstar,
Just thought I’d add some information for you as I was diagnosed with Grade 3 BC in May this year. My tumour was ER/PR negative but HER2 positive and measured 2.3cm. I found mine in the upper part of my right breast. I was 30 when diagnosed.
I had a sentinel node biopsy with lumpectomy in June. The blue dye has only a very local effect, I still have a blue patch near the nipple but it is quite faint and should be gone in another couple of months. Honestly the blue boob has not been something I have noticed or focused on at all – you will likely not notice it very much so don’t worry.
I’m not sure of the term LICAP flap as that wasn’t used with me. I had a cresent moon shaped incision directly over my nipple and the tumour was removed through this opening. This means you can hardly see my scar at all as it blends in with the darkness of the nipple.
The results of my node biopsy showed one cancerous lymph node. I asked my surgeon whether this was of huge concern, and he said that up to three positive nodes doesn’t have a substantial impact on future risk of recurrence. Obviously no positive nodes is the best outcome, but the fewer cancerous nodes the better.
In my case, I was always going to have to have chemo because the tumour is HER2 positive and therefore potentially more aggressive. I started my chemo 6 weeks after my surgery and so far have had two rounds.
Based on what you have said, it is a small tumour with no obvious spread to the nodes so you’re in a good position.
My advice to you would be to try only to focus on infomation which is relevant to YOUR situation – if you read too widely about more advanced diagnosis or different types of spreads of cancer you will really freak yourself out. If you’ve been advised stage one, then read about this until you’re told otherwise.
Good luck!
R
12 posts since
14 Aug 2020
Hi Posiemum
Thanku for reaching out and talking me through your story, sorry to hear what you are going through and I hope you are doing okay. And sorry it’s taken a while to get back to you. I had a few days away, more appointments, etc, so not been on here.
Reading through other people’s experiences, I have realised I am in a very fortunate position. I am very scared, but I also realised things could of been a lot worse, and I do feel silly for being so frighten. But I am one of those people that not great until I know the whole story. So I do appreciate you reaching out.
i had some news, I am HER2 negative, and have my operation booked for 11th September. I am also having the dye injection that morning and the nodes removed for biopsy the same day.
Thanku again xxx
6 posts since
28 Jul 2020
Hi Kelstar,
We seem to have very similar situations. My lumpectomy is scheduled for 18th September, so just a week after you. Like you, I realise that I am in a much better situation (stage 1, grade 1) than others, but that just makes me feel guilty for feeling so sorry for myself. I’m wrestling with my decision to have a lumpectomy vs. mastectomy. I’ve been told repeatedly that the outcome is the same for mastectomy vs lumpectomy followed by radiotherapy for someone with my type of cancer (estro positive and small, 9 mm).
How have you dealt with the anxiety of it all? I think it’s best not to try to compare our own cases with others, but I do think we can learn from each other re: how to deal with the uncertainty, fear and anxiety of it all.
I hope everything goes well on the 11th.
12 posts since
14 Aug 2020
Hi Murnaloo
I will start with a massive apologies as I have only just seen your message, and feel very bad it’s taken me a month to respond. I am so sorry to hear you are in the same position as me, battling this horrid disease!
Did you have your surgery? If so what did you opt for, it must of been a difficult choice, luckily I didn’t have that choice and my surgeon knew exactly what she wanted to perform. How are you coping post op?
For me, lots has happened, when people say it moves quickly, it does. I had my operation on 11th, and it went well, and I am feeling great. Which also makes me feel very guilty as I know a lot of people do have post operation issues. I am still a little sore, but back at work on lite duties, scar is healing fantastically and was back on my feet, doing school runs 3 days after operation. A little swelling, but no drains or other issues. I hope that my situation will provide people waiting for there operations with some hope, that some people bounce back very well.
post op results were good & bad. Clear margins, but lump was 4cm and its spread to my lymph nodes. 2/3 were positive. So moving forward, plan is to have extra radiotherapy to armpit instead of clearance as both outcomes are the same.
anxiety has been an issue! And is back again! I must admit, I stopped coming on the chat room due to my anxiety! I found myself reading too many stories, looking up too many things, and scaring myself silly with the possibilities! Chat rooms are amazing for the support, advice, tips and general advice, and I am greatful so many people are on here to support. Unfortunately I also found myself looking at the negatives! All the post op complications. So I had a break. None of them happened to me, I found out. So I had all that anxiety for nothing. But here I am again!
due to my node status, I’ve been referred for chemo! And I am gutted. So did phone my BCN for advice on what to expect with Chemo. What happens at first appointment, what happens during chemo! What is the process, any hints or tips. If I’m honest she was useful and told me nothing. So it was back to chat rooms.found out lots, even found a blog including photos of step by step treatment guides at my local hospital, which has been amazing!
problem is my anxiety is back as I come across lots of things like the oncotype test. It’s a test to see if I need chemo. I do fit the criteria, and there is a 60-70% chance I won’t need chemo! So I gone from accepting chemo to praying I am offered this test! Anxiety is through the roof!
Sorry to rant a little, stress levels are very high currently, so it’s not helping.
hope your doing well
6 posts since
29 Jul 2020
Hi Kelstar9
I am in a similar situation to you, er/or positive and her negative, stage 1 grade 3, tho only 1 out of 5 lymph nodes are effected with a micro so I waiting on the oncotype test to see if I’ll need chemo, should know if the next few weeks.
The waiting is terrible and the anxiety is killing me, I go from feeling positive, to thinking awful things, I wish sometimes I could escape my body and get a new one and resume the life I had this time last year..
I hope you receive nothing but good news from now on and this time next year this will be but a distant memory
Sending you love and hugs x
12 posts since
14 Aug 2020
Hi Jessie
Waiting is the most awful thing, but I am really pleased you got offered the Oncotype test. Even though the wait is painful, at least you will have extra information to make the choice. How are you feeling about the test result in genera!? And how are you generally? Okay? Sending hugs.
I have to admit, I really want the test, as if there is the smallest chance I can miss chemo, I want to grab that with both hands. Especially at the moment. This pandemic and chemo isn’t great, and I have a school age child. So worried if we have to isolate, will she miss more school!
Although I really don’t want chemo, I don’t think anyone does, I keep thinking that if I go down that path, hopefully active treatment for chemo will be all over by February time, and I will have hair again by the summer, it be short, but maybe it’s time to try something new! I don’t want short hair, but at least I am throwing everything at my cancer! Luckily for me, I feel okay about having to do chemo, if that’s how it goes, but I just want the chance to have the oncotype!
please take care and don’t worry too much! And let me know how you get on xxxx
6 posts since
28 Jul 2020
Hi Kelstar9,
Please don’t feel the need to apologise! You have been very preoccupied with much more important things than a chat forum (we both have!).
I’m glad to hear your surgery went well and you have bounced back quite quickly. My surgery was similar — the worst part was sitting in the waiting area from 7am to 2pm until I was finally called. Six hours after my surgery started I was home and eating nachos with my husband. So, yes, people should know that some surgeries go really well. I chose to have a lumpectomy followed by radiation. It has the same prognosis as a mastectomy, at least for my stage, grade and tumour size and location. I understand that is not for everyone, but once I wrapped my head around the statistics, I felt better about my decision.
How are you feeling now about possibly having to have chemo? I know it is overwhelming to hear, but I hope you have given yourself some time to deal with the initial shock and then will start to feel stronger and less afraid about it, although I am in no way dismissing how daunting and upsetting it is. You will come out the other end OK. Many girlfriends, as well as my mom, have had chemo for BC and it is a distant memory for them now. Again, I am not trying to diminish anything, but rather say that you can do this.
When do you know if you get to have the oncotype test? All of the waiting is horrible. (I’m waiting for genetic testing results at the moment and am very anxious.)
Like you, I find chat rooms actually make my anxiety worse. I know everyone has the best intentions, and I try to remember that, plus no two situations are the same. My surgeon, breast care nurse, husband and friends all suggested I take a break from googling and from chat rooms for a while after I had a panic attack and had to get a sedative from my GP. In all honesty, it helped with the anxiety tremendously. I also used Breast cancer now’s Someone Like Me service and it was wonderful. I really recommend that. You can talk one-on-one with someone who had a similar diagnosis to you and who is at least a year post-treatment.
Four years ago I had melanoma and the first thing my surgeon said to me was it was treatable and the second thing he said (to me and my husband) was don’t google. And I didn’t google anything other than the American Dermatology Association website. I had much less anxiety than I do with the BC diagnosis, I think in some ways because so much more information is thrown at us from the second we are diagnosed (and also because you hear about BC much more in the news, etc., than melanoma).
So, do what you need to for your own mental wellbeing. It’s important to be in a strong frame of mind as much as possible. Easier said than done, of course. But, also go easy on yourself when you are super anxious. It’d actually be weird if we weren’t anxious, right?!
Sending you all the good vibes I’ve got!
New BC diagnosis & feeling overwhelmed with information
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