Today's update, absolutely terrified

[lisajane7878]

Hi bibi I haven't been on hear in ages as have been so busy with the kids etc! This was a real blow yesterday but at least the nodes are out now!! The radiotherapy doesn't worry me either. Was just the shock of how many still had traces! I thought they would clear easier than the lump! I am waiting for an appointment now to find out radiotherapy plan. I think I will have a good blast though x

[Bibi44]

LisaJane So sorry to read about your nodes.  You must be distraught.  The thought of radiotherapy is not very nice, but the actual treatment is not too bad (a bit undignified, but it doesn't hurt). How many have you got to have? There are a couple of ladies on the Feb thread who are having quite a few. All the best with it. x ps hope your hair's growing.

[Sarahkears73]

Hi Lisa Jane, I'm sending you hugs this morning it sounds like you need them, I remember how I felt after being told no nodes were expected to be involved then 2 were. I felt like the bottom had dropped out of my world. Focus on the fact they've got the nodes out now and have a plan to tackle it. It's such a nightmare roller coaster with twists we just do not see coming. I'm 42 with a daughter so I totally get the idea of needing many more years ahead. Thinking of you today, easier said than done I know but try to find something to distract you today even if only for a couple hours, love Sarah xx

[lisajane7878]

Hi I'm just reading all this as I am too feeling a little deflated after my path results yesterday! I will start from the beginning so bear wirh!!!! Was diagnosed in Aug with idc l. Given a biopsy to confirm. Due to the size of the lump. Scan said 3cm doctor always said bigger!! 6cm which confused me as that was him feeling it. Her2 positive too!!!! More bad news. So he decided chemo first to get it into my system quicker and take a hold them mastectomy. Had it in lymph nodes too. So September I started 6 chemo sessions. Sailed through that with hardly any side effects really. Had mastectomy 9th Feb and full node clearance. All that fine too. Recovering well with little discomfort. Had a scan towards the end of chemoand scan showed no sign of tumour and nodes shrunk back to normal. So all in all felt huge relief. Went for results from surgery yesterday and indeed tumour had gone completely but they found microscopic traces in 11 out of 16 lymph nodes!!! This scares me so much that it must have been in 11 in the first place and that chemo didn't entirely wipe that out. So now the plan is more radiotherapy than we thought!! From being on such a high after the last scan I feel I have been brought back down with a huge bang. I'm 37 with two very young children so obviously want to enjoy many more years with them x

[Sarahkears73]

Hi Baz, I hope your radiotherapy isn't as bad as you are dreading. The whole thing just feels like a total nightmare doesn't it. My daughter is 13, and she does keep me going. My husband is excellent, scared but positive. My lump was 18mm right behind nipple couldn't be felt by hand. I'm expecting chemo even with only 2 nodes involved and I too am praying it's gone no further. They don't think so, I'm not unwell and they say I probably would be. I am trying to go day by day but even that is hard sometimes the best I can do is minute by minute. This weekend I'm making the most of being able to get out and about before surgery Tuesday. Never in a million years did I see my life taking this turn and I'm sure everyone feels the same. Friends are generally good although I'm learning to avoid the doom and gloom ones I can't cope with that on top of everything else. My employer are also sourcing me a Macmillan counsellor in the next couple of weeks, so I'm hoping that helps too.  Keeping everything crossed for minimal node involvement after Tuesday's surgery, enjoy your weekend, Sarah x

[Bazookas]

Hi Sarah,

It must've been a shock that your results are worse than expected. It's very hard but try and focus on the fact you only had a couple of nodes affected. I think they usually suggest chemo once any nodes are involved but if only a few it might be borderline? I had 11 out of 17 affected so I'm having everything thrown at me. I had a complete node clearance and I've just finished 6 months of chemo and about to start 5 weeks of radiotherapy. I keep finding out that things are different because of the 'seriousness' of my diagnosis. My chemo went on for longer, my radio will be longer than most and the sessions will be double the usual time - 40 mins instead of 20! It is all a bit depressing, but at least they have some extra guns to use. At first I was really shocked and convinced that this was the end of me. Just after diagnosis (they knew I had node involvement as had lump under my arm as well as breast) I had to have a CT, MRI and bone scan and I was convinced it had gone to my liver. But it hadn't and hopefully it still hasn't spread but I have to have 6 monthly scans to check - terrifying! 

I think most people feel similarly to me even if their diagnosis is different. It's a huge shock just accepting that you have cancer and it does take time to come to terms with. Maybe I still haven't come to terms with it?! I didn't find chemo as bad as I thought even though my feet and toes are still numb (and may not completely go away) but I'm dreading my first radiotherapy session that starts on Monday.

My GP gave me anti anxiety medication when I was in your situation - just after diagnosis and before full scan results. It really helped me get through the day. Once you've got your scan results and have a plan of action you will start to feel better. You will know what you are dealing with and hopefully have a good oncologist and team to work with. It's also impossible to sustain the high levels of fear and anxiety that you feel in the first few weeks. In my case I had a 9 year old daughter to think of (she's now 10 and a half) and had to keep going - even though I'm not sure how successful all this treatment will be to stop the cancer reoccurring in several years time. Do you have a partner or family and friends you can talk to? I have a few friends that have been through cancer that I can talk to and my husband is very supportive (although scared). I keep meaning to join a support group locally but not got round to it yet. Wishing you lots of good luck with your scans. Fingers crossed there hasn't been any spread and that you get lots support from your oncology team.

Baz x

[Sarahkears73]

Thank you I will talk to my nurse about these, Sarah 

[cjrd]

Hi Sarah,

Thought that you might find this useful!

Who is eligible for the Oncotype DX test?

You may be a candidate for the Oncotype DX test if:

•you’ve recently been diagnosed with stage I or II invasive breast cancer

•the cancer is estrogen-receptor-positive

•there is no cancer in your lymph nodes (lymph node-negative breast cancer)

•you and your doctor are making decisions about chemotherapy.

Most early-stage (stage I or II), estrogen-receptor-positive breast cancers that haven’t spread to the lymph nodes are considered to be at low risk for recurrence. After surgery, hormonal therapies such as an aromatase inhibitor or tamoxifen are prescribed to reduce the risk that the cancer will come back in the future. Whether or not chemotherapy is also necessary has been an area of uncertainty for patients and their doctors.

If you’ve been diagnosed with early-stage, estrogen-receptor-positive breast cancer, the Oncotype DX test can help you and your doctor make a more informed decision about whether or not you need chemotherapy. (Some research also suggests the test may help postmenopausal women with estrogen-receptor-positive breast cancer that has spread to the lymph nodes make chemotherapy decisions. Talk to your doctor if you are in this group.)

EndoPredict

This test is to help women with breast cancer decide if they should have chemotherapy after surgery. The study is open to women with early breast cancer that grows in response to the hormone oestrogen (ER positive).

EndoPredict is suitable for the majority of patients with breast cancer, namely for those with a primary, hormone receptor positive, HER2/neu-negative tumor. It is irrelevant whether lymph nodes have already been affected or not i.e. the test is suitable for use in women without positive lymph nodes, as well as with up to 3 positive lymph nodes.

A study to help decide if women with breast cancer should ...

www.cancerresearchuk.org › About cancer › Find a clinical trial

IHC4 

The IHC4 test uses a special staining process to measure four markers in cancer cells:

•HER2 receptors

•hormone receptors (both estrogen and progesterone)

•Ki-67 levels (proliferation)

[Sarahkears73]

A couple of people have mentioned this oncotype test, is it available for all? I'm 42, and pre menopausal so not sure if it applies. A couple of people seem to say it's post menopausal only. I'm trying same as you to hang onto treatable and curable. Thank you it helps me feel less alone to talk on here X 

[Sarahkears73]

A couple of people have mentioned this oncotype test, is it available for all? I'm 42, and pre menopausal so not sure if it applies. A couple of people seem to say it's post menopausal only. I'm trying same as you to hang onto treatable and curable. Thank you x 

[catokitty]

Just to say I had 2 positive lymph nodes (one macro and one micro) and had to have further lymph nodes taken.   It was a much shorter procedure than mastectomy and I felt fine afterwards.  They were all clear thank goodness.   I had a test similar to Oncotype which scored me at low risk so oncologist did not recommend chemo for me despite the two positive nodes.   I know it is scary but you will get through it.   You are not alone and as other people have said loads of people have positive nodes and do really well.  This whole process is frightening but we are stronger than we think.   Consulant told me when I was diagnosed that it is very common and very treatable and I have hung onto that.  

[Sarahkears73]

Thank you everyone, I just can't seem to get a grip on myself today but it's a massive help to know I'm not alone, and that I'm not the first person to get this news or feel this way xx

[Ele J]

Hi Sarah, I think we all empathise with how you're feeling as we've all been in exactly that place, regardless of the specifics of diagnosis. Whatever the news and next step, you will start to feel better as you move forward, I pronise.

On a practical level what I would say is 2 of 3 isn't 3 of 3, and 'traces of cancer cells' means that the lymph nodes have done their job in catching the cancer and stopping it getting further into your system. Loads of people on here have had node clearance after results like yours and found all the remaining nodes are clear.

Big hug and let us know how you get on. X

[Awil]

Ho Sarah I really feel for you the waiting is the worse part .... I had 2 ops in May then chemo then rads am
On herceptin for a year but it's the stage in your journey that's terrifying. Keep busy that's all I can say . You will get to the finish line it's tough but you will get there xxxxx

[nickif]

Aww Sarah, you are bound to be scared, I can't really say anything to make you feel better as I didn't have to have my lymph nodes removed but sending hugs to you xx

[Sarahkears73]

hinall, I'm hoping to get some perspective and hope from some of you who may understand how  I'm feeling. 12 days post WLE, pathology report shows 2 out of 3 lymph nodes have traces of cancer cells so I now have to go back in on Tuesday to take them all out (on one side). I wasn't expecting this as the original biopsy was clear. So now after more unexpected bad news I'm terrified. I'm literally feeling like this could be the end and I could find out all lymph nodes involved and its spread further and that's it. That sounds dramatic and irrational but because I wasn't expecting cancer diagnosis and I wasn't expecting lymph node involvement I feel next step is not expecting but being told that it's much worse than previously thought. I cannot get a grip of myself and tonight my husband is also very upset whereas up til now he's been very strong and so I'm panicking even more. I feel like I'm going to be the tiny minority that doesn't make it and I've no idea how to get through this next waiting stage for the op and waiting for results. Does anyone have any ideas or been through similar? Thanks, Sarah X