Looking for women who may be experiencing what I am or have beaten it. On Thursday, I was diagnosed with locally advanced HER2 positive breast cancer. My tumor is 72mm & I get the results from my ct, bone scan & mri on Tuesday to find out if it has gotten into any other part of my body. I am completely overwhelmed & am putting my all into beating this so I can watch our 2 little girls grow up with my husband. I'm most likely starting chemo next week for 6mths, then surgery follow by radiation. I am scared & don't know what to expect. I don't know what questions to ask or what I should know. I don't want to ask the questions I should, like; prognosis & the effects of the medicines I'll be taking. Any information any one would like to share that may be of benefit to me would be greatly appreciated :-)

I'm so sorry you've found this at such an advanced size. The best possible pieces of advice I can give you at this time is to take everything one step at a time and write everything down. It will help with how utterly overwhelming everything can be. Remember that while your children are important you can't sacrifice your care and well-being for them as much as your impulse says otherwise. Speaking from experience being one of those 7-year-old children whose mother had breast cancer and living with it around, they understand more than you might give them credit for. It's okay for things to change. The BCNA offer a free "My Journey Kit" they will mail to you, to help you stay informed at each stage and organize yourself because that can be so challenging. It's really helped me out so far. Link: My Journey Kit I would love to give you the information on what to expect from your treatments but your side-effects will depend on the cocktails you're given and the procedures you undergo, and these vary from person to person. With chemo: When you have your chemotherapy treatment plan consultation they will give you all the information you need. You don't even need to ask for it, they have to inform you by law. The list does go on, but all of these things are manageable. I keep telling myself: If frail little old ladies can get through this so can I. From what I gather over the forum the most common side-effects you can expect are: Nausea (is combat with medications they will provide), Dryness (moisturizer will be your best buddy), Hair loss (Thinning, happens to just about everyone around the second session), Lethargy (Your body is fighting, unfortunately unavoidable), Stiff muscles and joints (Exercise to get on top of it), Others include: Watery eyes, nail damage, skin rash, fluid retention, soreness/redness of hands and feet, numbness and tingling, diarrhea/constipation. And of course, it may cause infertility - an early onset of menopause. BCNA Page link to Chemotherapy information: Here Your treatment may have others, just read what they give you. People react in different ways from mild to severe. They will adjust your personal treatment based on the side-effects you report, to make you as comfortable as possible, so note them all down and tell people about them. Rip off that band-aid of not wanting to worry anyone with your niggles- they are all important (You are a real princess now and you gotta get someone to get those damn peas out from under your mattress, no pea too small to complain about). With surgery: BCNA Surgery information link: Here Do not worry about this right now. It's a long way away for you. These procedures are routine and afterwards you'll experience discomfort pain that you will get pain medication to combat. You'll go in, be anesthetised, wake up, and focus on recovery. You may need to deal with tubes they put in place to filter out fluid from the area, having your lymph nodes removed might cause lymphoedema which is reversible if you catch it early enough. It's that physically simple, it's the psychological side that is the most challenging. Learning to love your new body can be a challenge. But cross that bridge when you get to it. One bridge at a time.

Thanks so much for the information. The reason it was caught so late is we think because of lobular cancer which I learn now is pretty hard to see in young dense breasts. I had an ultrasound 10 months ago that just showed fibrocystic changes, which I'm now thinking was the start of my cancer. Losing my boobs doesn't worry me one little bit, I just want to get better ??

I had the same thing go on, the breast was riddled with fibrocystic change and the only reason there was even a red flag was that I could feel a lump. It was only during surgery they found a tumor beneath my areola that hadn't showed up on a single scan. I mean, how terrifying. Bring on the nana breasts I say, the easier to see things the better. I felt the same way. All the way up to surgery I was of the mind to get it out, get it out of me is the goal, just take both boobs if you have to. But now I avert my eyes from my reflection, I don't feel confident even alone when naked, and touching the scar tissue (have to massage as part of the healing process) nauseates me because I have to deal with the reality of disfigurement hands-on. Eventually I'll own the scars, but the aftermath is difficult. And I truly underestimated how difficult it would be. That said, it's only week three of recovery, plenty of time to get used to this.

Hi Gem I'm so sorry to hear you are joining us here. I was diagnosed at 35 at xmas, pregnant with my 3rd child. (my other two are 3 and 5). I am being induced this week, then 10 days to recover from that, then straight back to chemo. I thought my breast/nipple itchiness was just pregnancy - how wrong I was. It is scary and overwhelming and the speed at which decisions are made is incredible. I had three tumors, once of which was quite large, pagets disease of the nipple, and invasive ductile carcinoma. It had also spread to the sentinal lymph node (but not the following six). I am also HER2 positive. I can't have the scans, MRI etc whilst pregnant, but I had an immediate masectomy (like within 4 days of initial diagnosis) - the results being worse then the original biopsies showed. I then commenced AC chemo (apparently ok whilst pregnant but I can't have any plalet boosters etc, nor can I breastfeed.) They are inducing me 4 weeks early so I can continue with treatment. With chemo, everyone reacts differently and it depends on the type of chemo regime they give you. But as INKPETAL says, at the chemo session they will talk through it with you and give you heaps of take home info, specific to your chemo. In general terms, nausea, hair-loss and tiredness are the most common. Nausea is combated with a range of things both at the session and with take-home meds - so for most people is not too bad. As my oncologist said to me the treatment is aggressive but not as bad as blood cancer treatment. So no walk in the park but no-where near as bad as it can be. Do not be afraid to ask for help, especially with young children. I have found the childcare and school, as well as my local play-group to be an immense support with the kids. Even my local church (whom I'm not a member) is amazing with people dropping by every few days with meals etc. It is hard to ask for help but don't say no when it is offered. Also try to remember that the more aggressive a cancer is, the better it responds to treatment.... and with HER2 there is a specific targeted treatment for it - not a general blast everything. Lastly remember it is OK to be scared, and you don't need to bottle it up. The site here is fantastic for support, venting, bad days etc. We are all on this journey together - you are not alone. Wishing you the very best Em xx

Wow! Em, I can't even imagine how that has been for you. We were trying for a third child & had had 2 miscarriages back to back November last year & January so I expected I'd be told that my breast changes were just hormonal. Its very comforting to hear you say that the more aggressive the cancer the better it responds to treatment, that is news to me & gives me so much hope. I wish you all the best with the birth of your baby. I know a couple of people who have been diagnosed with cancer while pregnant & their babies are now very happy, healthy toddlers & all the best with your recovery. I have already been in contact with some amazing people, as much as it saddens me that we have all had to meet this way.

HER2 Positive | BCNA Online Network

16 Replies

Emma_H
Member
10 years ago
Oh my Gem,

Really glad to hear your scans are good. And I really hope your husbands turn out to just be a scare. I can't imagine dealing with more of this at the same time.

Sending and thoughts your way

Em xx
InkPetal
Member
10 years ago
Also replying here because the last post reached it's nesting capacity.

SUCH a relief having scans come back clear, I really hope your husband's doctor's concerns turn out to just be a scare.

If not, it just means you'll be going through these journeys together, need each other even more, be able to understand one another on the same level. Sometimes having to be strong for another person just makes you stronger overall - if the worst happens and it does turn out to be cancer, you'll have to be strong for each other, and you'll get through it together.

And definitely start splurging on having a maid come in to clean the house from then on if you don't already. :P <3
InkPetal
Member
10 years ago
*Huge hugs* That's really reassuring. Thank you Gem.
GemFlanagan
Member
10 years ago
Today is mixed. On one hand, my results are great. CT, brain CT & bone scan are clear. MRI showed the chest wall is clear. Port goes in on Friday & chemo starts Monday. On the other, my husband went for a colonoscopy today & they think he has cancer. If they're right, I don't even know how to take that in right now!

How are you doing today?
InkPetal
Member
10 years ago
No problem. It feels good to do things that might be useful <3
InkPetal
Member
10 years ago
You definitely will! How is everything today?
GemFlanagan
Member
10 years ago
Ivf isn't so bad. Both of our girls are ivf so that bridge we have already crossed. It's hard, but I think battling this will be harder. Same thing though, just focus on the end goal and it all makes it worth it.

once I was diagnosed we decided my recovery was our focus. We don't want to do ivf again. We didn't before I was diagnosed & we don't now. Ivf gave us 2 beautiful babies. If chemo takes away my fertility, so be it. The important thing is I will get to watch our 2 girls grow :-)

in saying all that, I completely understand where you're coming from. If I had endured cancer first instead of infertility first, I think I'd be feeling exactly the same as you! I do hope you can do ivf though & have the babies you wish for xx
Ann-Marie
Member
10 years ago
Thanks Rebecca for sharing all the great links for Gem x
Emma_H
Member
10 years ago
Gem, Rebecca

I am so sorry you are going through this, I think that if I didn't have my bubby on the way this would hit me so much harder. My hubby and I were trying for nearly 12 months for number 3. I'm "lucky" in that I didn't have to make future decisions like IVF etc.

If you are thinking of a 3rd make sure you ask about your options (IVF, egg freezing etc) before you start treatments. Chemo can make you infertile, menopause etc. Even if in the long run you decide you won't have, at least you will the option.

Em xx
InkPetal
Member
10 years ago
My heart is so heavy with that story. All my best to the health of yourself and your (will be) newborn.

I can't help but envy everyone who has had the chance to have children before the mess set in. All this losing fertility and IVF business hanging over my head is killing me inside.

#NegativeNelly

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HER2 Positive

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