The long wait for chemo

I posted this originally in the diagnosed thread but someone said to pop over here and post it here as well as you lot know about chemo and what not :smileyhappy:

 

I was diagnosed 3 weeks ago. 3 years ago I went to the unit with a lump. After a mammogram and an ultrasound I was told I had a cyst and dense breast tissue. No one did a biopsy. They said it might change size and shape but nothing to worry about. 18 months ago I asked the surgery nurse how I could tell if there was something I should worry about and she reassured me and gave me a leaflet on BC symptoms. 8 weeks ago my skin started to pucker and now they tell me I have stage III ductal BC. They cannot be sure that it was not there 3 years ago. It is now 6cm, Grade 2 and in at least 1 node which is enlarged. Bone scan and CT were clear.

I can’t quite believe it. I’ve been bumbling along for years thinking I just had a lumpy cysty breast and all along it was cancer. I am 41 and have a 14yr old.

Of all the difficulties it’s the waiting I find so hard. I am having chemo first to shrink the tumours before surgery but I won’t see the oncologist until the 17th and no one can tell me how long I might wait to start chemo. Every day that I am not having treatment I am terrified that it is spreading. My new fave song is ‘all I want for Christmas is chemo’.

How long have folk had to wait and how do you cope with the waiting? I have begun a ‘get fit for chemo’ regime of healthy eating etc just to feel like I am at least doing something!

Hi Pie315

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Hi Pie,

 

I’m so sorry to hear your story. I don’t know how you’ve coped, and now - more waiting!

 

I was DX November 1st 2012 and had MX with sentinal node biopsy on 12th December 2012. I had grade 3 ductal invasive with 1/3 nodes affected. My first chemo was on 5th February 2013, making me a February Valentine. I had FEC-T and had my final dose on May 23rd. I’m now on Tamoxifen. Going for my first mammogram since active treatment finished tomorrow, two days before anniversary of my surgery. It is a good idea to get fit for chemo, but I’m afraid I wasn’t. What with RA, Sjogren’s, Bronchiectasis with pseudomonas, I was very unfit, but I still coped better than I and anyone else - including my oncologist could have imagined. Sending hugs and wishing you all the best.

 

poemsgalore xx

Hi Pie314,

I read your initial post and it sounded just like me when I was diagnosed. My GP told me the thickening I could feel was the muscle and connective tissue… a long time later it turned out to be a very large cancer :-(. I was too scared to ask how big, but over 5cm. I was 40 with 3 sons aged 6, 9 and 12. My first post on here was asking how I could speed up the process of starting chemo (I had neoadjuvant too). I was diagnosed 10 May 2013, saw an onc 20 May (took a lot of hassling on my part and some luck with a cancellation to be seen this quickly) and started chemo on 5 June. It felt like forever with a time bomb inside.

I’ve now finished chemo and had an mx (chemo didn’t shrink the lump hugely but they did get good clear margins whereas the surgeon said it would have been very difficult to operate before surgery, so it obviously did something). I did find neoadjuvant chemo really difficult psychologically because I hated living with the lump all the way through. I feel soooo much better now the breast has gone. I’m on Tamoxifen and start rads on 2 Jan. I still have huge wobbles but they are less frequent now. Like you, I struggle with the thought of how long it was there for and I have to be very strict with myself not to go down the “if only” route.

Re. diet, if it interests you, I would recommend reading “Anticancer - a new way of life” by Dr David Servan-Schreiber. (He mentions that rosemary increases chemo’s ability to penetrate BC cells, which I wish I’d known when I was having chemo). I also liked “Your Life in Your Hands” by Prof Jane Plant - it’s controversial because she advocates giving up dairy but I’m finding it something to focus on and keep my mind away from darker thoughts.

A bit of a ramble, but I just wanted you to know you aren’t alone. I hope you can enjoy your Christmas xx

Hello Pie,

 

Is good that you are working on getting fit for chemo, just make sure mentally you are ready too!

 

I had neoadjuvant chemo and I founded very hard psychologically. I do think cancer spread to axillary nodes whilst I was having chemo, but they are telling me I should put this thought out of mind and move on. So, I am trying hard right now to let go of negative thoughts. 

 

Join one of the chemo monthly threads, depending on which month you start. I found great comfort amongst my cyber chemo buddies. All the best…

 

Mahsa x

Morning Pie,

Looks like you are very much prepared, good luck! 

Yes, I had WLE and ANC 4 weeks ago. Chemo changed the tumour but didn’t get rid of it, so no complete response. Different doctors have different opinions and have to justify their decisions based on the individual cases. I was told LNs are more resistant to chemo, because 3 biopsies earlier showed no cancer. Anyway, I am not going to start debating on what’s/whose right or wrong here. Personally, I think is a pure luck. One thing all oncologists agree on is, tumours don’t react similarly in all cases, even those with same pathological report! 

Hope chemo will cause you little or no nasty side effects.

Bon courage,

xx

Hi Pie,
Yes, I had node involvement. At the time of dx, node biopsies came back inconclusive but I was prepared for them to be positive because one node was palpable. After chemo 2 nodes were still positive - no cancer cells in the others and I’ll never know whether more had been affected initially or not. For my sanity, I’m assuming it was only ever 2 - all through chemo I’d been scared it would turn out to be all my nodes, given the lump had been there for some time, so I was actually relieved that ‘only’ 2 nodes were positive, even after chemo. Obviously I know it wasn’t a good result, but so much better than my worst fears.

Like you, I tried to focus on the end goal during chemo (having the lump present helps with focus!) and tried not to get too upset about the more cosmetic things along the way. I hate being (almost) bald and particularly hate not having eyebrows but I try to keep it in perspective - I want to survive so needs must. Much the same with losing a breast. It sounds like you are in as good a mental place as you can be before chemo. Keep taking a day at a time like that and you will be fine. Your treatment will soon be started and then at least you will feel some protection from the chemo.

Mahsa, hi there, just realised I haven’t replied to your pm, sorry. Interesting you were told lymph nodes were more resistant to chemo - I hadn’t heard that. I would have thought that since the chemo killed so many of the cells in your lump the cancer couldn’t have spread to the nodes during chemo. They can be really difficult to biopsy I think - maybe they missed the positive cells on the biopsy? We will always have so many unanswered questions, sometimes they just have to be left behind. Hope you’ve had a lovely Christmas. xx