Recent diagnosis of Ductal Invasive B... - My Breast Cancer ...

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Recent diagnosis of Ductal Invasive Breast Cancer

Nutlover profile image
22 Replies

Hi everyone I was diagnosed with Ductal Invasive BC on the 11th July 2023. The lump was spotted on a CT scan which I had on the 5th June this year for an unrelated matter. I was lucky that it was picked up. I was referred to the Breast clinic for a mammogram on the 20th June which resulted in several tests. They did a Ultrasound and a needle biopsy and the breast surgeon said she thought it was "highly likely to be malignant because of its unclear edges". I went to the appointment with my husband who was great. I hadn't felt the lump and I wasn't feeling noticeably ill at all. I have Rhemthoid Arthritis so sometimes I feel quite tired and ache because of that. The lump is about an inch in length and located just behind my nipple area.

My calm reaction on the 20th June to the news that I potentially had BC seemed to unnerve the surgeon who commented that I appeared "very stoic" about my potential condition. Admittedly I was pretty calm and asked several questions about next steps etc. It seemed to me that she wanted me to have an outburst of anguish in her office which I didn't. I was obviously very concerned but as a solicitor by profession I am quite calm/reserved in stressful situations.

Since my initial appointment and several tests later (MRI) they have confirmed that I am hormone and HER2 positive. I'm stage 1 and the MRI picked up an enlarged auxiliary lymph node which they are going to do an Ultrasound on later today. They think in addition to the main lump there are two other lesions near it in my left breast. The right breast is clear. My breast cancer consultant initially said he thought we could potentially avoid chemo and radiotherapy but it is now looking like I may need chemo first then surgery. He seemed to think it's been caught early enough for a good prognosis. I'm learning as much as I can about the condition and it's all very scary. I have two sons aged 12 and 14 and we have told them both about what's happening. They seem to be taking it in their stride and they are aware of the risks etc. My mum died suddenly in December 2012 from pneumonia as a result of cancer from an unknown primary. We only found out about the cancer on the day she died after she was taken for a scan and they discovered numerous tumours. Her slight cough turned into pneumonia within a week and her death was devastating. She was only 60.

Following my diagnosis I have gone through lots of mixed emotions ranging from relief that at least I know something is wrong to feeling really angry. I already have one chronic disease which can have severe complications but to also now have BC well what can I say. I just hope my treatment will start soon and I don't suffer to many adverse side effects. My plans for the near future have all been disturbed and are now all centred round hospital appointments. I then think if I hadn't been checked for my RA with my regular blood test I would have been blissfully unaware and by the time I'd felt a lump it may have been too late.

Anyway that's my story so far on the whole try to stay positive. I'm looking forward to learning and sharing with you all as time goes by.

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Nutlover
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22 Replies
mathematics profile image
mathematics

Sorry to hear of your diagnosis and I wish you all the best in your treatment. I found out I had breast cancer in 2011 it was stage 2 and about the same size as yours and it was very aggressive showing up a 9 and in my lymph nodes so a grade 3. I had all the treatment surgery lumpectomy and full lymph clearance on my left side, chemo and radiotherapy then 10 years, 5 on tamoxifen and 5 on letrozole.. The day I got the full diagnosis I had a good job offer, which I had to turn down because I needed to start treatment. I am still here and grateful. I was about 47 years old when I was diagnosed. You will I am sure get through it treatment is getting better all the time. Lots of love and take care

Nutlover profile image
Nutlover in reply to mathematics

Thank you everso much for your advice it is really appreciated. It really is a roller coaster but as you say there is a lot of good treatments and doctors out there. Thank goodness for the NHS. Thanks again.

Happyrosie profile image
Happyrosie

Hello Nutlover and welcome.

You are just where I was nine years ago. Ive some thoughts for you.

Firstly, the negatives: do NOT go searching around the internet for advice and cures, other than reputable cancer charities, this site and any sites they or your oncologist recommend.

Don't be angry, and don't blame yourself (am I overweight? was I too stressed? did that chocolate eclair do it?). You are where you are and anger is not going to help.

Do not research far ahead. Your team will tell you what you need to know step by step, otherwise it is just too overwhelming.

The positives: You will be dealt with by a multi-disciplinary team, I expect. They are all experts in their field, so don't try to over-think them.

If you have chemo, consider NOT working at all, or take one week off in every three. Your brain may be muffled by the chemo so decision-making is compromised. Discuss with your colleagues

Tell your loved ones - well you've done that already.

Always have someone with you when you see a medical professional - they can take mental or physical notes.

the professionals are superb. The admin around them may not be. Keep on top of appointments. Ensure all departments you are with have your up-to-date contact details (my imaging people for CAT-scans and so on had two different addresses and chose the incorrect one to contact me ...) . If I or my husband had not been on top of things I would certainly have fallen through the cracks and probably not survived.

I was given lots of leaflets. The best was from Macmillan (the charity) and was intended for the close relatives or partner of the woman. If that leaflet is still around, read it a couple of times.

Do get back to me if there is anything you feel you must know that I might help with.

Nutlover profile image
Nutlover in reply to Happyrosie

Thank you for the great advice and kind words. Yes I think having a week off in-between chemo sessions is a good idea. Also not over researching is a good tip. Thanks again for the helpful advice.

Vgrady76 profile image
Vgrady76

Hi, I was diagnosed with stage 2a, her2 negative grade 2 BC 3cm tumor in left breast, lymph nodes clear, all happened in 2018, age 42yr, I had Lumpectomy in left breast, no Chemotherapy involved just 15x Radiotherapy, 5yrs later I'm still here! All clear mammograms, my life has changed very much, I don't sweat the small stuff, and enjoy life at every opportunity, please be kind to yourself, it's now 2023, and bc treatment is better than ever, one of the best in the world, trust the process, and trust all your health professionals, sending love ❤️ xx

Nutlover profile image
Nutlover in reply to Vgrady76

Thank you so much for your kind words. It really is appreciated. I'm glad to hear that you are doing well x.

Linkj profile image
Linkj

I was diagnosed with stage 2, grade 3 ER, PR and HER2 + ve invasive ductal breast cancer 6 years ago. I had the lot, mastectomy, delayed reconstruction, chemo, radiotherapy, bone and hormone therapy. I am sitting here eating my lunch having played tennis this morning. Her2+ve is a nasty little bugger so to only be stage 1 they caught you really early. The meds, Herceptin etc have revolutionised survival. I won’t deny the treatment is tough but I always say the alternative is not acceptable. Life is sweet, we have faced something hard so we value every moment and every loved one. I agree, knowledge is power but keep to reputable websites, Macmillan's Breast Cancer Now etc. you will amaze yourself, take each stage as it comes, most of us agree that the worst bit is finding out and all the waiting to get on with your treatment plan, so you are nearly through the worst bit. I also only ever cried in the privacy of my study, drama is just not my thing!! If you want any further support feel free to pm and we can even talk on the phone. Xx

Kruza profile image
Kruza

Hello Nutlover; welcome to club no one ever wanted to join, but here we are. The advice given by others before me is sound and please listen to it. I was first diagnosed with BC in 2003 when treatment options where not were they are today. I now have metastatic breast cancer diagnosed September 2021, and did four infusion chemo treatments and are now on Kisqali and letrozole (targeted chemo therapy). It is a roller coaster to be sure, but, I am still here. Give yourself grace to mourn your situation, it is not fair for you to go through it, so cry if that is what you need to do, but like I always say, "do not pitch a tent there", move through it and fight the battle on your own terms. We are here for you and send virtual hugs to you.

Nutlover profile image
Nutlover in reply to Kruza

Thank you for your kind words of support. Sorry to hear about your condition but like you say you are still here and fighting. I like your comment about not pitching a tent yes certainly dwelling on it won't help. I am quite a positive person so I'm trying to take stock and reflect. It's nice to know there is somewhere to get advice from others who have experienced similar journeys x.

ba5083 profile image
ba5083

So sorry to hear of your diagnosis along with the other life stress you are dealing with. My initial diagnosis with Invasive Lobular (a little different than IDC) HR/PR+ HER2- in April of 2022. At the time everything seemed clear cut as to the treatment plan from the surgery, oncologist etc. It was only when a discussion with the radiologist to possibly expect the unexpected. My treatment prior to a double mastectomy showed (about 6 months to help shrink the tumor) very positive signs on scans, a breast MRI and ultrasound only to be debunked by the surgical pathology report. My radiologist was the only one that stated the surgical pathology is the gold standard if prior treatment worked, or worked as effectively as the tests indicated. From the surgical pathology report things were far worse than suspected/anticipated. It was at that point when my husband and I decided to educate ourselves. If I could recommend a couple things to those diagnosed that I wish I knew from the beginning:

Cancer is never predictable. Many times cancer especially BC can re occur 5,10... or even 25 years after a person might be determined NED or NEAD (No evidence of active disease).

Become your best patient advocate and educate your self on cancer overall, breast cancer and your subtype. I have recently switched Onc because I didn't think my Onc had my best interest and was treating me off a flow chart so to speak. Even when presented articles from the top cancer institutes in the US I was still dismissed.

Read "How to Starve Cancer" by Jane McClelland

Read "Eat to Beat Disease" by Dr. William Li

Course there are many others that I have read but those are where I would start. In the long run will these books help? I don't know but they have given me a sense of peace and control

Nutlover profile image
Nutlover in reply to ba5083

Thank you everso much for your kind words and support. Sorry to hear about your diagnosis and the difficulties which you have encountered. I will certainly heed your advice about about the unpredictability of Cancer. I'm certainly learning alot about the subject so that I can make informed choices. My care team have been really good so far apart from the comments of the first surgeon who described me as stoic but I won't hold that against her. I will certainly have a look at the books which you have recommended. Thanks again x.

Warrio profile image
Warrio

I'm sorry you are going through this. Several things, you are not alone in not having an emotional reaction talking with the doctors. I got my BC diagnosis over the phone, I was able to react by myself, when I met with the surgeon she was worried I was putting on a front. She advised to let the emotions come out or it would be much worse later. I made sure not to push the emotions down as they came but I allowed the tears to come usually when I was alone. Nothing wrong with that. Next with chemo before surgery, that was my experience, in my case it helped the surgeon get clean edges. Try and have someone go with you for support, it's a long appointment each time. Take something to do. Color books and pens, books, portable craft like knitting. Keep a notebook of the side effects be clear and rate how bad they are. If they say you'll lose your hair, make a plan how you want to and are going to deal with it the best. I cut mine, then 2 weeks later shaved it off and got a design shaved into it. With in a week it was gone. For me it was easier to shave it early over dealing with the large clumps falling out. (That was the most emotional thing for me). Think about what's most comfortable for you, hats, wigs (regular and fun colors), scarves, or rocking the bald. No wrong answer!! Keep learning about your cancer, educate your family and friends. Encourage questions to your comfort level. Ask questions of your care team, talk to a social worker and nurse navigator if available at the facility you are being treated. Attend support groups if you need to, no shame in it. It can be helpful to talk with others who in many ways have a similar path. Big hugs. Keep fighting

Nutlover profile image
Nutlover in reply to Warrio

Thank you so much for your kind words and support. It's good to know that I'm not the only one that has encountered the lack of emotional response issue. I just thought she was about too critical about it but I shall let it go. On the emotion front I think I'll just go with the flow and make sure that I'm not suppressing them. Thanks for the heads up about making sure I have sufficient entertainment at the chemo sessions. It's good to know there is somewhere I can get advice and share my experience with others. Thanks again x.

blessedX6 profile image
blessedX6

Hi Nutlover,

I totally understand your emotional roller coaster with the breast cancer journey. I had a lumpectomy in March and finished radiation therapy in July. I am taking an estrogen blocker for 5 years for estrogen positive DCIS. My tumor was confined to the ducts so I didn’t need a lymph node dissection or chemotherapy. The waiting for test results was the hardest for me. I prayed a lot and relied on my family and friends for support. Websites like this are wonderful to share experiences. God bless!

Nutlover profile image
Nutlover in reply to blessedX6

Thank you for your kind words and sharing your experience. Yes the waiting and not being able to plan ahead is frustrating. I have decided to try and chill and go with the flow so to speak. Was the lumpectomy painful? How long was your surgery if you don't mind me asking? Thanks again for your support x.

blessedX6 profile image
blessedX6

Hi Nutlover,

My surgery was an hour long. My surgeon put a pain reliever at the site of the tumor before she closed the incision so my pain was minimal the first day, I took Tylenol before bedtime. I wore a front closure bra with no underwire for several weeks to provide support. I drank lots of water to wash out the anesthetic and ate more protein for healing. I did the exercises prescribed by the surgeon and tried to walk every day. I recovered pretty quickly. I pray all goes well with you. Keep in touch.

Nutlover profile image
Nutlover in reply to blessedX6

Thank you for your message BlessedX6. I'm seeing Oncology tomorrow morning and I should get my treatment plan on Thursday. I'm keen to get things started x.

sassykitty profile image
sassykitty

Good Morning Nutlover, Seems we will be on this journey together. I had a biopsy last Thursday and reported to me on Monday Invasive Ductal BC right breast. Will be meeting with the surgeon next Wednesday for more path info and treatment plan. Will keep you in my thoughts and prayers. Let's keep in touch.

Nutlover profile image
Nutlover in reply to sassykitty

Dear Sassykitty Thank you for your message. Sorry to hear that you are also travelling along this road. I think it's important to take each day as it comes and to be kind to yourself. Rest if you need to, disclose information when you want to and not let others rush you into anything. In my case they have advised having Chemotherapy before surgery for 5.5 months. Then surgery then Radiotherapy. Quite scary but I trust that they know what they are doing and I'm armed with my questions etc. I am here if you ever want to talk and like the others say we can all support each other. Talk soon x.

sassykitty profile image
sassykitty

Thank you Nutlover for your message. Yes, one day at a time. Will share what my path will be after my appointment on Wednesday. Bringing a friend with me that had BC twenty nine years ago. I am afraid I will not ask enough questions. Thoughts and prayers are with you.

sassykitty profile image
sassykitty

Hi, just checking in on you to see how you are doing. Thoughts and prayers are with you. My surgery is scheduled for Sep 12th. Until we get the genetics back do not know if it will be a lumpectomy or mastectomy. Four weeks following the surgery I believe will start radiation.

God bless...

Nutlover profile image
Nutlover in reply to sassykitty

Hiya Sassykitty thanks for your message. That's good that you now have a date for your surgery. I don't know about you but it's all the waiting round and not being able to plan ahead which is quite frustrating. Hopefully the genetic tests will come in soon to give you time to process the implications etc before the surgery. How are you feeling about the surgery and Radiotherapy? Are not having any chemotherapy as well? Do you have someone at home that can look after you post surgery? I've found the Macmaillian centre at my hospital to be really helpful and supportive. I went on a course there last week called "Demystifying Chemotherapy". The course coincided with an appointment for an Echo-cardigram at the hospital which was good. I remember when I had my first child my friends tried to prepare me for what to expect and the main message was that you leave your dignity at the front door when you give birth. All that poking and prodding (all for a good cause). I think it's very true with Breast Cancer/ testing the number of people (medics) who have touched them now must be in double digits. It's all very necessary my youngest son (Kieran, 12) asked me the other day whether I felt awkward/shy/embrassed about people seeing them and I said no because they are all trying to help me. I told him that unfortunately embrassment kills alot of people because they don't want people seeing their private parts. I made both my boys promise me that they would regularly check their private parts for lumps and bumps including their nipples and chest area. They were surprised that men also get Breast Cancer. We are all on a steep learning curve on this one.

I should hopefully be starting my Chemotherapy in the next couple of weeks or so. I met my oncologist on the 9th August and he is going to put me on the following chemo regime 1) Docetaxel and Carboplatin 2) Pertuzumab, Trastuzumab and Docetaxel. I will be on them for 5.5 months and at the same time I will also be given HER2 specific Antigen injunctions for 12 months. After the main Chemo I'll then have surgery followed by Radiotherapy. I just hope that I don't have too many adverse side effects. I'll be having a picc line fitted as well because I have small veins. I'll have to buy some long sleeve blouse/tops so people don't see it.

Despite everything I'm taking things in my stride trying to concentrate on the positives and taking each day as it comes. Sorry for the long update x.

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