newly diagnosed & tested but medical chaos...

Norppa:

People here are going to reply! I just stumbled across your message during my morning BC.org review.

I'm a relative newbie to this, too, and can understand the fearful/horrible place you're in right now. I only have my advice but I'll give it.

Ask the clinician nurse you're talking to for some sort of anxiety med (if you can take them) for the short-term. I did this when first diagnosed, mainly to sleep and not be Googling this shit at 3am, and it helped. Also, ask them about a therapist/counselor to talk to. My cancer center had them at the ready in some capacity. Perhaps you should be honest with them about the self-harm fears. To let them know you really need assistance.

IF you can, just take a deep breath and hold on to all the What-Ifs about your job until you know what the treatment plan is. You are in the worst time right now NOT knowing what is happening and why. With more information, your medical team will know what to advise. At least they are making every effort to provide the best care for you, it sounds like.

I promise you, this gets better. Although I agree, it's unfair as fuck that you're faced with this at 27.

Come here to vent and ask ANY questions. We'll respond. You are not alone.

My chemo decision (not) was based on the Oncotype DX test (I also took Mammaprint), but I didn't find out the plan until, Idk, sometime in March with diagnosis 1/4/17. So -- not that our situations are similar -- but the time until you have the plan in place is, everyone here agrees, the worst time.

I'm sure you are completely exhausted. I hope you can sleep and find some peace at certain moments. Try anything: silly TV, book, walking, to remove that fear even if for only a moment. Even come here to vent, it's a good place for it.

I didn't tell everyone, either. There are many posts on this BC.org about this, too. Once you say "cancer", perception shifts for sure.

I just got back from the Loire Valley and quick couple of days in Paris. I lived there long ago for a summer. Miss those times. I also visited Helsinki a few years ago. Just a very quick trip but what a cool city.

Reach out and just try to find something positive to hang on to right now. Big virtual hug!!!

So, so sorry you are faced with this, at such a young age, and at Christmas no less! Do you perhaps have enough resources to go see one of the private clinics in Britain on an expedited basis, ( bringing your records) to help put everything together for you more quickly, and talk and explain things to you more, plus coordinate prescribing? I know many Brits who bypass the cumbersome NHS clinics and get what they see as more personal and faster care privately. It costs more, but if you can muster resources, especially at this stage, it may be an option to consider at least for the initial phases.

Good luck, and again so sorry

Hi Norppa. Just chiming in to agree with others' responses and a couple of pieces of advice. If it's not helpful you can just ignore me.

First, remember that you are the decision maker here. You will be presented with a number of choices and recommendations, but you get to decide.

Second, it is extremely helpful to ask for copies of all of your test results. Those reports will have information about tumor size, receptivity to estrogen, etc. that is very important.

Third, do not look at photos! They are either worst-case scenarios or marketing material designed to draw customers. Wretched.

And just sharing my journey: I had a mammogram that found a tumor. Then an ultrasound to confirm it that found a second suspicious area. Then an MRI and an MRI-guided biopsy of the second tumor that confirmed it was cancer too. But both were so small I was able to do a lumpectomy and my cosmetic results were great -- even tho my surgeon removed an area the size of a small lime from my poor B-cup boob. Both tumors were strongly ER+ and no lymph nodes were involved, so no chemo. So far not the most fun I've ever had, but manageable.

I love that you are a pole dance instructor! Use that strength to carry on. We're here for you.

That makes sense and I totally get it. And absolutely, we all felt a lot better once surgery was over; til then it's a lot of uncertainty and anxiety. Hang in there!

By all means get a benzo like Ativan. You can certainly get, say, 10 pills. It really does help. As does distraction. I watched Netflix a lot. Try to stay off Google.

If your tumor is estrogen-responsive, see if you can get an Oncotype test.  I had a grade 3 tumor that had invaded lymph vessels, but a low Oncotype score, so no chemo.  I was told by the test company that 30% of grade 3's have low scores. I know yours is grade 2, but just saying, the Oncotype really clarifies whether or not chemo will be helpful, or if anti-hormone meds is sufficient treatment.

If you have a lumpectomy you will have radiation. Then an anti-hormonal treatment. How strongly ER and PR positive was your test?

I would make surgery a priority regardless of your classes. And make long term safety a priority over everything else, including very understandable cosmetic worries. It must be so hard at your age. I have a daughter who is 27. I am dealing with cancer in my 60's and cannot imagine....

I think the worst months of my life were over the summer while I was going to doctors and having biopsy after biopsy and had no idea what was next. It was a real struggle to get up some days. When I found out results and we set the date for my BMX I was so relieved that I think I was laughing. I was excited. Not for the actual surgery, but I finally had a plan. Then, after all the Mammoprint and BRACA tests came back and I found out I wasn’t going to have chemo I wasn’t sure what to do with myself. I had steeled myself for it. I was ready (as ready as I could convince myself) to go through hell so I could get on with life. Sitting here on the other side of surgery and being on meds is such a different perspective. I’m not the same as I used to be. But I am one badass who is gonna kick cancer to the curb.

Find someone you can talk to, in person, on the phone, online, here... but find someone who gets it. I had my first lumpectomy at 30. It was not fun but I made it and I didn’t have any issues with deformed breast at all. I remember being so relieved. But I wore oversized shirts for years because I was self-conscious about how I looked. When I was diagnosed (this year, at 47) I looked at my boobs and said gtfoh and take that Cancer with you. I didn’t stay flat, tho it was an option. I decided on the “remove and replace” option. I’m almost 3 months out now and tho they don’t look normal to me, nobody looking at me can tell any difference, well, except something is different. I teach middle school. I told the kids what was going on as far as having cancer and needing surgery. I didn’t go into details. A few weeks ago one of my 8th grade boys told me I looked different. Did I cut my hair? Was I wearing different shoes that made me taller? Didn’t i loose weight? Ummmmm no. But I was wearing a tightish shirt. He couldn’t tell me what was different. But whatever it was, it was good.

And don’t look up stuff on google. You’ll scare yourself to death needlessly. These women here, whether they know it or not, have been (and still are) a godsend to me. As others have said, we have your back. Hang in there. Try to rest. Drink lots of water. Eat healthy. Enjoy life.

Sorry that you are having to deal with this at a young age. Cosmetic results vary after lumpectomy depending on how large a woman's breast is, the amount of tissue removed and the location. A large amount of tissue removed from a small breast will result in a visible dent/missing chunk, regardless of location. Depending on the location of your cancer and if it is not too close to the nipple to require removal of the nipple, your surgeon may be able to use a peri-areolar incision, which usually results in an undetectible scar. They call these LX missing areas partial defects, which is a misnomer, because they are full defects to any woman who has one. Canada also has a public health system and post-lumpectomy reconstruction is covered. Fat transfer is often the technique used, but if you have a very low body fat %, this won't be possible. Some oncoplastic surgeons rearrange the placement of existing breast tissue to fill in the gap and for larger areas, sometimes an implant is used. It appears that the NHS covers post-LX recon, per the link below. Not sure how common resistance is, but some quick googling indicates that sometimes local PCTs (Primary Care Trust) deny funding, but your docs can appeal and secure funding. Best wishes and hopefully you will not need post-lx recon.

https://www.nice.org.uk/guidance/ipg417