So why aren't I happy?

San-Dee

So, after my beautician discovering a swelling in my armpit way back in November last year, the follow up GP examinations and breast screening, biopsy, then a lumpectomy in March followed by appointments with my oncologists, I have been put on hold waiting for the results of my Prosigna test. All that uncertainty! Am I going to come face to face with this again further down the track? Will I need chemotherapy? When will radiation therapy start? What about hormone therapy? 

Well, the results of the Prosigna test came in and my oncologist called today to tell me I won't require chemo. So, I should be over the moon, right? Well, why aren't I? I am so grateful to be in the position to afford the genetic testing which shows I get to dodge the chemo bullet but I feel like I am in a hole and it's getting deeper ...  day by day. Everyone tells me that's okay, you're entitled, be kind to yourself and, and, and ... but I feel like crap. Surely that's not normal?!?!? I think my oncologist was taken aback by my response. He kept telling me it was wonderful news, but I must have sounded disappointed.

Okay ... I'm ready for the funny farm.

I feel for all the women out there who can't afford the Prosigna test and just go ahead with the chemo. If rebates were available they would certainly be in a better place right now and avoid all those debilitating side effects. I know BCNA along with other sister organisations are lobbying governments to offer rebates for the test, and now feel like I need to take up the cause and lobby my politicians. Surely it would result in women not suffering the effects of chemo and the government would save money in the long term. It gives me something to aspire to, I suppose.

But I can't get out of this fog. I should be celebrating, but I seem to be ... can't think of another term .... in a depression. 

I sound so overly self absorbed it is ridiculous and I apologise to you all. Maybe a good smack across my head and the start of radiation therapy will do me some good. 

Hugs to everyone.

San-Dee

 

Sophollie

I think I get kind of how you feel.

Yesterday I got word that Bone and CT scans showed no signs of Mets - best news ever right?  And it was for about a couple of hours.  But then I remembered, I still have cancer.  And that still really REALLY sucks.And though the results are positive, having them now means we are moving forward with treatment which is just a big slap in the face reminder that I have cancer. 

So yes, be kind to yourself.  Dont compare your tragedy to someone elses.  You have cancer and you are allowed to feel bad even when you have good news because your baseline is still having this really awful thing happening to you. 

I hope you can find a way to pick yourself up again.  Maybe looking into doing some advocating is a way to do that but just make sure you aren't pushing yourself too much.  Big hugs xx

Julesy

I agree totally with Sophollie. We are entitled to feel sad or scared or angry or all of these emotions and more even when we get good news. It doesn't mean we are not pleased with good results, it is just that regardless of that we still have cancer and that is scarey. Take good care of yourself. Like all of us, we need to "stay in the now and not get ahead of ourselves". No one really knows what the future holds so we dour best to focus on the now and what we do have. Be kind to yourself. You are not alone. Thanking you for sharing. 

Eliisa

Dear San-Dee

This is Eliisa from BCNA's Policy Team. Thank you for sharing your feelings so openly. I am sorry to hear that you are having a difficult time and are feeling down.

We are glad that the Prosigna test was useful for you and understand you may still have some worries and concerns. It’s positive that you are able to identify your feelings, as they are completely normal. We know that many women experience worry, stress, guilt, anxiety or depression while going through treatment and after treatment has finished. There are a number of things that might be helpful while you are going through this difficult time.

• BCNA has partnered with BeyondBlue to produce a fact sheet aimed at women with breast cancer who experience anxiety and depression. The fact sheet includes helpful tips and information on recognising and addressing anxiety and depression.
  
  
• You may also like to call BCNA’s Support Services line and speak with a member of our team who can provide you with information and support 1800 500 258. 
  
• Cancer Council 13 11 20 also offers free telephone support through specially trained cancer nurses. They can answer questions about cancer and offer emotional and practical support.

• You may also like to talk to a GP about how you have been feeling. Your GP may be able to provide support or refer you to a psychologist, social worker or counselor who can help.

• You may also like to talk to your doctor about whether you are eligible for treatment under a GP Mental Health Treatment Plan. This will entitle you to up to 10 Medicare-subsidised appointments with a clinical psychologist, appropriately trained GP, social worker or clinical occupational therapist.

Being diagnosed with breast cancer can be traumatic and it’s normal for women to experience anxiety or depression as a way of coping or adjusting to what has happened to them. Having support and seeking help when needed can be really important to your overall health. We know it can be hard to ask for help when others around you are encouraging you to be strong and stay positive, but there are many different sources of support available.  

Many women who have had breast cancer treatment worry that their cancer may return. This is a normal reaction to breast cancer, and can be a cause of stress and anxiety for some women. This year, BCNA will be developing resources on fear of recurrence and other issues women experience such as sleep problems. 

As more genetic tests, such as Prosigna, are becoming available in Australia, BCNA will continue to monitor and advocate that these tests are accessible and affordable to women. For more information on available genetic tests, please see our Pathology Page.

I hope that’s helpful. Please feel free to PM me with any q’s or contact BCNA on 1800 500 258.

Eliisa x

primek

When I was first diagnosed my breast surgeon said I would do well with surgery and chemo...as the type of cancer I had is almost always offered chemo. On my second appointment he said we wait and see if I need it. That freaked me right out. I spoke with the breast care nurse and she again reiterated that I would be offered chemo. So following surgery...no nodes etc clear scans...because I have a her2 pos grade 3 ES pos cancer I am on chemo. Long story I know...but I totally get it. We are delighted but scared about what is the right course. You still have a lot of treatment to get through, and possibly hormone treatment so still a lot to get through. The "I'm  lucky" feeling may come eventually but may never. Doesn't  matter. Our experiences are all traumatic and take time to recover from. One step at a time. Stop criticising how you are feeling...just acknowledge that this is how you feel. Relieved but still fearful. Kath x

mona63

No doubt there is a lot of info but too me this info would be best not to follow someone's post.   Just in a section avail to everyone.    

Best wishrs

Kim R

Hi San-Dee,

I know how you feel about the test, I did it too, an expensive exercise! I came back with high numbers so had to have chemo, at least I knew it was the correct path for me. But while I was waiting for the results I had a few family members on my back saying, if it was them (which it wasn't !) they would have chemo just to make sure regardless of the oncotype test results. Well chemo is the pits, wouldn't wish it on your worst enemy, I wish I did not have to have it. 5 months later I am still not myself, everyone says give it time but I am sick of being a cancer patient. Sorry for my raving, I know you are probably thankful you do not have to have chemo but you must also wonder what is the right way to go?, am I making the correct decision? what if the test was wrong? We all put so much trust in our doctors and we have no choice but to do that. All the best with radiation is a bit of a trial but you really do get use to getting your boobs out for one and all to inspect!

regards

Kim 

San-Dee

Hi Kim,

Sorry you had a crappy result from the oncotype test. And I am sorry you are still suffering from the chemotherapy.

I have thought about going for chemo regardless, for all the reasons you have mentioned, but my oncologists has said he would not recommend it, so I have to trust him. 

Cancer plays with your mind as much as your body and we never seem to be sure of the outcome. There are so many things to consider, some of which seem trivial, like cancelling our holiday. Maybe I'll be fine, maybe I won't. I'm sick of all the maybes, so have taken some control over one of them. It helps ... a little. 

Never apologise for "raving". We all do it and we are all entitled. I am about to embark on the radiation treadmill and will undoubtedly "rave" on here again. Thank you so much for your support, it means a lot.

Take care and many hugs,

San-Dee