NEWLY DIAGNOSED
Hi there
so this is my first post. I'm not a fan usually of social network but have decided to join this group as an extra support network. I have two great kids aged 19 and 17 and the most gorgeous wonderful husband of 22 years. I had a mammogram, ultrasound, and core biopsy last week and Friday was told that I have breast cancer. I am ER+ PR-HER2- so far that's all I know and am researching this. I had the choice to have conservative surgery and radiation or a total left side mastectomy which I've decided to do.
I've always had a few cysts in my left breast, and also have a fibroadenoma which is a benign thing too and have yearly scans for this reason but this outcome has blown me away as I didn't even notice it. I'm 43 and have no family history of breast cancer either. So I'm praying this is early stage apparently wont know that until I have my boob removed and the usual pathology so am waiting anxiously for my surgery next week. I am a nurse also which I'm thinking now is not a good thing as you can know too much, and I have also nursed some really lovely women post operatively in the medical centre where I work. So here's to us all having a good recovery. Looking forward to hearing from you all. Margie.
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Hi Margie, I am sorry you find yourself here but so glad you decided to join this forum. It isn't easy when you are first diagnosed. The early days can seem like a roller coaster as you wait for surgery, then the results, then for a decision on your treatment plan going forward. Like you I had no family history, I'm 47, have a husband of 28 years and 3 kids 22, 19 and 17. I am so grateful for their love and support which has really helped me get through the last six months of treatment. But equally the women on here have been such a fantastic support to me since I was diagnosed last October because they just 'get it' . We are all unfortunately going through having breast cancer together and to be able to reach out to others who truly understand what I am going through, my fears, my joy, just how I am feeling in general, has made things much easier. It must be hard having to now be the patient instead of the nurse. I hope you will come on here for any questions about what others are experiencing, tips or just to vent. We're here for you.
I wish you all the very best with your surgery. Let us know how it goes.
Sending you hugs, Nadine
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Hi Margie welcome to the site. The early days are hard as not sure what is to come. I have found this site great to be able to share the good and the bad. I'm a carer and work with nurses it is difficult to be the patient.
One day at a time and take lists of questions with you when you go for your nest visit. Take care xx
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Hi Margie, welcome to the site. It's a whirlwind at the beginning and such a time of anxiety waiting for all results and treatment plan. I agree being a nurse can make it worse but it also helps us ask the right questions and also we can tackle side effects sooner from things as we know...well we can get this better. I read for a bit...then know I need a break as I can end up getting caught up on the stats of negative...not the overwhelming good results of positive outcomes in breast cancer. Goodluck with your journey and know we are here for you. Kath x
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Hi Margie, and welcome to our network. It is daunting, scary and overwhelmed when you are first diagnosed. The best bit is that breast cancer is probably the most treatable cancer, and research and treatments are improving daily. Just take it 1 day at a time, and give yourself time to heal. Sending you a big cuddle, Trace ????????
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Hi there nadine
wow what an overwhelming response ive had to my post! Wasn't expecting that. I am so glad now ive joined this forum. Thanks so much to you and everyone who has made me feel so welcome. I wish you all the very best and want to offer my support to you also.
So I do have a few questions to get the ball rolling
Have you had the gene test and if you have daughters have you had them tested too?? I have a 19 year old daughter and am now scared for her risk factor also.
Some women ive spoken to were told what stage they were at prior to their surgery?? Is this what usually happens??
As I have no idea!! I was told had to wait until after surgery.Also if I have to have chemo is it really as bad as Ive read about or do some have better tolerance than others?? Ive stocked up on pain killers and anti nausea meds already!! I should find out today about my surgery date ill let you know.
Also my surgeon only wants to take 1 boob, Ive read some women have both off in the first instance and some only have one?? Margie
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thank yoi tracey for your reply I'm overwhelmed already by the support given I want to be able to give it back to you too its reassuring to know that we are all there for each other. Chat soon Margie:)
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Welcome Margie. Sorry you have been diagnosed and at a vibrant young age as well. Hopefully that will mean you will heal quicker, finish treatment and get on with your life again loads faster. It is scary. I wonder if its worse if you are a nurse and have more of an idea of treatment? For me I had absolutely no idea. No one in my family had this bc and for goodness sakes I was so healthy I didn't even take Panadol much. I chewed it pre-op and the nurse had to educate me you don't chew them, you just swallow them lol. Enjoy your visits to this forum. I love the extra support.
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I have an apalling family history Margie with 5 close relatives in Scotland with breast and or ovarian cancer (1 had 2 breadts cancera and ovarian) and a known gene + in at least one member....so I opted for bilateral mastectomy for a couple of reasons. I still await genetic testing.
- My breasts were very dense and a mammogram 5 weeks before discovery of a lump couldn't pick it up. If I lived in a city I may have been able to have MRIs instead but not an option in country areas. I wasn't aware of this beforehand.
- My cancer is Her2+ ES+ and I knew that the her2 could mean recurrance in the same breast, in the margins or even in the 2nd breast.
- My cancer on biopsy was grade 2 but final pathology was a grade 3...so aggressive even though very small.
- I had planned to undergo genetic testing to see if I carried the gene or just the random bad luck anyway...and I was considering that I would have ovaries removed and possibly bilateral mastectomy even without cancer.
- I opted not on a lumpectomy for above reasons and also as radiotherapy would have been onorous as live 500km from a treatment centre.
- My breasts were large which would mean major reconstruction on the remaining breast anyway to remotely get a match.
- I opted for reconstruction at time of mastectomy...and a reduction. Although not complete I have a reasonable bust and still have an expansion and changeover to go.
Hope this is helpful. As to chemo...although I am miserable and tired on it...it isn't as bad as I thought, but I haven't been able to work as yet on it.
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Hi Margie, I knew that you would receive a great welcome - as I mentioned the women on here are fantastic!!
As to your questions:
- I haven't had the gene test. I am not sure if it is a personal preference to have the test or whether some doctors recommend it based on the individual circumstances of the patient. I have three sons. I think that if I have had had a daughter I would ask my doctor the benefit of having the test and if there was a good need have myself tested first and then talk again to my doctor about having my daughter tested depending on the result. My understanding is that only a small percentage of breast cancer is due to the BRCA1 and BRCA2 genes. Better ask your doc.
- I don't know how anyone would know their stage before surgery. The way it was explained to me is that we can only know the stage once we know the definite size of the tumour (which sometimes is different between the imaging you've had and the surgery) as well as whether it has spread to the lymphs or other places. I had a bone and CT scan before surgery which showed no 'hot spots' i.e. cancer elsewhere in my body. So just because of that I knew I wasn't stage IV. I then had a sentinel node biopsy of my lymph to see if it had spread which it hadn't. That and the size of tumour 19mm told them I was stage IA. I did however get told before surgery what type of cancer it was (HER2+ for me) as well as the grade (grade 3 - aggressive) because of the pathology report from my initial core biopsy. Sometimes people get confused between stage and grade.
- Chemo is SOOOOO different for everyone. What I didn't know before breast Cancer (BC), apart from the fact that there are different types of breast cancer, was that there are many different combinations of chemo drugs. Because of this, it's impossible to know if chemo will be ok or not so ok. Some chemos are once a week, others are every 3 weeks. It just depends. Some women breeze through it and continue to work and exercise and the lot. Others (unfortunately like me) get hospitalised after each chemo round and end up watching endless Netflix while in bed at home feeling like they have the flu. I had what I would call "an eventful time" with chemo and yet I had no nausea, no mouth sores. Looking back it wasn't a walk in the park but it wasn't complete torture, I had good days and bad days. The main thing to remember is that it is manageable. If chemo is on your cards you will get through it. You will have lots of care and support from your medical team who will be with you every step of the way and you will be a trooper once you get to the end. It's kind of like being pregnant - horribly uncomfortable when you are going through it, but soon forgotten once it finishes.
- There are a lot of factors that go into the decision to have a single mastectomy (Mx) or double Mx, or a lumpectomy (also know as breast conserving surgery. Have your ordered the My Journey Kit from BCNA yet? The kit has a lot of information about this and other great things. Factors will be size, grade, type of breast cancer you have, and personal preference. Some women choose to have both breasts removed because they have a better chance of not getting breast cancer again in the future. For my type and size of breast cancer there really isn't any increased benefit from having them both off. My predicted survival rates at 5 years for Mx vs lumpectomy was roughly the same. Based on this I chose to have a lumpectomy because I had this psychological hang up about keeping my nipple. That was a very personal thing for me and other women will be different.
Hope these responses are helpful. Reading the My Journey Kit will really help and reassure you.
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Hi there chrstine
holy crap that is one hell of a story!! Was very happy to read about the journey for yourself and your daughter. Sounds like you both are really quite remarkable. I know that's quite a cliche thing to say but Its been a privilege for me that you have been so open about your breast cancer this early on in my breast cancer journey.
It seems getting through treatment is just one of those things you do...... you just get through it because you have to and want to. so ill just have to wait and see. My surgery date is next Thursday the 26th May so ill keep you posted. Cant thank you enough for your post especially coming from another nurse. Hope I don't have the same nurse as you... will definitely want to smack her in the face for sure lol !!! Ill be thinking of you when I'm on that table xxx I to have no oncology training minimal surgical training and my nursing career has been rehab cardiac ortho and general practice, although I have dressed many ladies "knockers "as you love to call them....that's bloody hilarious by the way!! post mastectomy. I may ask you for a new left "knocker" post surgery for sure as I too have been using hubbys work socks in my tops post core biopsy due to the bruising and discomfort. I'm only have itty bitty titties though (B cup), Its meant heaps to me to hear your story I wish you and your beautiful girl all the very best. Hugs Margie xxxx
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Hi Margie. Hopefully your surgery is over, and has gone well.
I, too am a nurse, and a midwife. You've had some great responses to your post. We all have different treatme t paths and responses. Don't let anyone expect you to know about bc because you're a nusre. Unless you've worked in oncology it's a foreign language.
You won't know the stage until the surgical pathology results are in. My initial mammogram said 35mm, USS the same day said 15mm. Make sense of that. I had chemo first, then surgery and radiotherapy, so I'll never know exactly what stage I was. My only symptom was axillary discomfort, then found enlarged node, so knew that I was node positive from the start, and would be having an axilary clearance.
Take care, Lyn
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