"You have breast cancer"
Hi Ladies,
Its so nice to see/find this online group. My world has literally been turned upside down in the past week. Ive been diagnosed with grade 1 invasive ductal carcinoma ER positive in my left breast. Im having a lumpectomy and sentinel lymph node surgery on December 1st and I was given my diagnosis on Friday November 13. Im only just 38, have no children and there is no history of BC in my family.
I found my lump completely by accident- in the shower shaving under my armpits and felt a lump, but as I had my period, I just thought it was somewhat hormonal and thankfully I was booked in for a very overdue pap smear 10 days later (which also came back with minor abnormalities, but that can wait) and I had the lump checked out by my GP who referred me on for an ultrasound the following Monday and it was then that I started to get nervous. The radiologist was called in and he told me that I had to get this biopsied the next day and his urgency got me very scared and the following day I had the core needle biopsy and then had to wait- that wait was horrible and then on Friday I heard those above words, the words you think you are never going to hear being said to yourself, especially not at 38!
I met with my surgeon yesterday and have an incredibly lovely woman who will be treating me. I feel somewhat relieved that my diagnosis is good- well, as good as it can be in a shitty situation. The main thing I am really having trouble dealing with is the thought of being thrown into menopause or pre-menopause. Ive been told that the tamoxifin will give me some menopausal symptoms such as hot flushes and dry vagina- yay! Im lucky that I have never really wanted children, but the idea of going into menopause so early is daunting.
I have great friends, family and boyfriend, but I know that there is nothing like the support of other women who have been through this or are going through this that will help the most. I really believe in the power of mind and healthy eating and am trying to stay positive. I live on the Sunshine Coast and have the beach right near where I live and am using my daily walks with my beautiful dog who looks like Lassie to calm my mind. I have waves that come over me where the tears are uncontrollable and I think about all of the 'pink washing' of everything and I think, "gee, I'm now one of those women!" I feel like I have now joined a very exclusive club that too many women are actually members of!
Im a freelance journalist and really want to try and use my 'voice' at some stage to bring more information about breast cancer and how it affects younger women out there in the public domain. So much of the information is directed at older women and there are very specific issues that are really hard hitting for younger women like early menopause/fertility for example.
Thanks for listening ladies and I look forward to being here and supporting, loving and caring for you all.
Ness xxxx
Comments
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Hello Ness and well done for being so brave to get online and share your story so far, it took me nearly 6 months to get to that stage!
I am very new here myself. I can honestly say I do know what you're going through and how you feel right now. It's all so bloody scary in the beginning and everything seems to happen at warp speed doesn't it? I would like to share my story so far with you so you know you're not alone in this. My diagnosis was in June this year.
I am much the same as you, felt a lump in the shower and thought 'oh thats weird, i'm sure that wasn't there before'. I too figured it was probably nothing but I'd get it checked with GP anyway as I was also due for the dreaded pap. My GP said 'oh you're only 34 so i'm sure it's nothing, probably just a cyst or something at your age but i'll send you for an ultrasound just in case'.
One week of waiting to get in, then the longest ultrasound ever, followed by (to my surprise) a mammogram, really?! at my age? what for? I thought they only did those on older ladies? Then instead of heading off home as I had expected, I was sent back into the ultrasound room, closely followed by a nurse, the radiologist and then a doctor! WTF was going on, now I was getting nervous! Doctor said then and there that it wasn't a cyst and that I had a breast cancer, what?! He did a fine needle biopsy straight away and told me to go back to my GP first thing monday (he was ringing to give her the results as it was friday arvo by this stage).
I spent the whole weekend thinking 'how could he know I have cancer, he doesn't even have the biopsy results yet'. I rang my mum (she works in a pathology lab) and she confirmed what I was thinking. We went to the GP monday and she said my biopsy results looked clear but the results didn't match the ultrasound or mammogram, again 'what the'? So off to the breast surgeon for a closer look. Another wait until friday to get in and a very nervous week at work followed! Friday ended up with core biopsy being done and by saturday night the surgeon rang me to confirm it was indeed an invasive cancer. What followed was a blurry week of bone scans, blood tests etc. I was booked in and had surgery (very large wedge lumpectomy/partial mastectomy) including sentinel node removal one week later.
I had a stage 1(not in my lymph node), grade 3 invasive tumour with very weak ER+1, PR+1, HER2-. Good prognosis, same as you, provided I do chemo followed by radio and hormone therapy. Much to my horror I might add, as I don't use any chemicals (in the home on on my body), only eat organic fresh and unprocessed foods and live a very clean healthy and active life, so the idea of putting toxic chemicals in my body was beyond my worst nightmare! Not an easy treatment to agree to
I have no family history either and like yourself I have no children. Even if it's not something you have ever really considered or want, the idea of the option of a family being prematurely taken away from you is really hard to digest, so I totally get where you're coming from. I went through a very rushed round of IVF before I started chemo, because at 34 I still wanted the option. Not a lot of fun with a needle phobia but I did manage to get a few eggs frozen, just in case.
I also understand your fears about early menopause. I went from an excessive amount of hormones in my system (IVF) to literally none over night with the start of chemo! What a shock to the system! I am told it's different for everyone and can depend on your chemo drugs, but I am now unfortunately in full chemical induced menopause due to chemo. It's not easy to be honest, and no one told me it would happen with chemo, only with the hormone therapy. You might be one of the lucky ones and it may not happen to you though, fingers crossed! So far the night sweats and hot flushes are the only problem I have (no dryness issues so that's a plus!), they do suck i'll be truthful, but the ladies on here have been really helpful with ideas on how to help with that and it's still a better option than having cancer!
Sometimes your specialists forget they are dealing with a younger lady, one of mine needed a reminder after being a bit too blunt and matter of fact about things when discussing having a bilateral mastectomy and ovary removal with me like it was nothing! Don't be afraid to tell them how you're feeling. Mine rang and apologised later after seeing my distress and said they get so familiar with seeing it everyday with older women they go into autopilot mode and forget younger women have got so many aspects to think about when making their decisions and a lot longer (in general) to live with the consequences of such.
My chemo is finished now, I had 4 rounds of docetaxel and cyclophosphamide. I also did nivestim injections to boost my white cells throughout as I also have coeliac disease and low bone density, not a good combo with chemo. But I got through it. I lost my hair, all of it, but I've gained many great friends already. The people are all really friendly at the various treatment places you will go and the specialists really do know what they're doing, trust in them and follow the plan they give you.
At the half way point before I start radio next week, I already feel so much better. Keep talking, I didn't and it got way too difficult! There looks to be many great ladies on this site and we are all here when you need us!
Enjoy the beautiful walks with your family and special four legged friend. Good luck for your surgery, you will be ok
Hugs and warm wishes xx0 -
Hi Holly,
Awwww, thank you SO much for your story- wow, it does sound so familiar and you hit the nail on the head about children. Ive never been overtly maternal or seen it is my number one thing to do, to have children, but the idea of not being able to do that, it does hit home in another completely different way. Like I said, there are many different issues that come with the cancer diagnosis that affect younger women, and the information is just not out there. I was NEVER aware that the treatment also could come with all these hormone issues and I really feel for the women who are trying for children later in life and then get this diagnosis.
Im remaining really positive- its easy at times, as I still feel the same way I did before the diagnosis and not sick at all and then it hits me- "shit, I have breast cancer, really?, me, breast cancer". Can I ask, how much was the IVF stuff and when exactly did you do that in your treatment? I must admit, its something I am thinking about but I don't know where or how I would even approach the subject.
Thanks for your message Holly- keep in touch and I will too. Lots of love, support and positive vibes being sent your way xxxxx
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Hey Ness, thanks for reading my 'extremely long' post! You are always welcome to any help I can give you
Not sure if it's different state by state, but I am in SA and here once you are diagnosed with breast cancer and have to have chemo you automatically qualify for free IVF (it's covered by medicare). The only cost to me was the excess payment I have on my private health insurance (I chose to do it privately) for the 'day' procedure when they do the egg collection. You then get 5 years free egg storage at the facility also.
Just tell your surgical oncologist and especially your medical oncologist (the one that organises your chemo) that it's important to you and that you want to look at your fertility options and they should be able to set up appointments etc. for you. You do have to do it BEFORE chemo starts. The fertility clinic people are wonderful though and it's obligation free so even if you change your mind once you get all the info it's ok. The clinic also gave me free appointments to speak with their fertility counsellor to help me with my decision! It gave me a much better sense of 'peace of mind' and I'm now really glad I did it as I don't know if my early menopause will stop or not but at least I still have a backup option just in case it doesn't!
Good luck and let me know how you go
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Hi Ness,
Big hugs coming your way. I too was diagnosed on a Friday 13th, but I received the news way back in February! I'm 40 with two young daughters, but I think the thing I have struggled with the most through my treatment has been the hot flushes and weight gain and early menopause (I had Grade 2 DCIS, hormone positive, HERC2 -, and required L mastectomy, 6 months chemo, 6 weeks radio, and am now on Tamoxifen). We have so much information available to us, and really great care up here on the Coast. These first few weeks and months are such a roller coaster of emotions until you lock in your treatment plan and gain a greater understanding of what is ahead.
For me, the early menopause hit a bit through my chemo (about 2 months in I think), with the hot flushes getting stronger quite quickly. They are definitely the thing I struggle with the most, but over the 5 months I have had them so far, I have found that exercise is prob the thing that is helping me to deal with them the best! So your daily walks are a really good thing. Plus if you are better than I was with motivation, then try to continue any exercise levels so you limit any increase in weight that might come with treatment (I added 8 kgs to my frame that I am now struggling to lose!).
I too live up here at the Sunshine Coast, near the beach. We have a wonderful support network that you might want to come and access at Bloomhill (Buderim). I'll try and work out how to email you in case you want to meet up.
I'm thinking of you Ness.
Cheers,
Bec xoxoxo
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