Positive results but feel strange

[blueash]

Well I don't want to worry anyone but I would like to prepare you, if you are borderline for chemo YOU HAVE TO DECIDE they do not give you any advice!!!!

Well they don't just hang you out to dry but what happens is that if chemo has less than 2% benefit according to the statistics they don't even mention it to you. If between 2% and 5% (that is the borderline) then you get an oncology  consultation without a recommendation. Only if it is over 5% do they recommended chemo. The stats can all change with your stage, your age, lymph nodes, HER2 status etc.

Lots of women come on to ask about chemo when they are borderline and if it helps you to decide then let me tell you that chemo is not as bad as whatever you are fearing. If you are worried about you hair ask about the cold cap. Works for some but not for everyone. The side effects can be rough, but rough is not dead and lots of us have had chemo and we are still here.

If you find yourself facing chemo then join your monthly starters thread but don't worry too much - it is not nice but you will be ok.

[ladybowler]

Sue H-S

Your post as with all the ladies who post on here who are further down the journey then us are so so useful and re-assuring.  One of the things I have reallyl appreciated with this forum is that if you are not sure of something you can come on here and someone will be able to help you.  I

You are absolutely right I do and will share my experiences with the ladies and will always answer any of their questions if I am able to, or direct them to the nurses etc., if I have not had particular experience of something.

Radiotherapy itself is very doable, I found it is the travelling everyday to/from apts that can take its toll on you. I am now 10 days after radiotherapy having finished, and actually I am feeling really good, the area around the nip is looking sooooo much better and almost back to normal colour with just a discoloured areas around the outside of it.  My skin seems to be holding up well, I am using E45 twice daily on the breast but only put it on the fold underneath at night as I am using a polymem dressing under there during the day and you can not use to two together.  I have used aloe vera in the early days but my rads team asked me to only use E45 and keep it in the fridge so that it was cooling when I applied it.

I have this lovely square shaped area on the top of my breast which was where the boosters were done, which is quite dark, as it would be if you had sunburn and then it started to settle down to a tan, the rest of the breast is back to its normal colour. 

I have had several days last week when I experienced some fatigue, heavy shoulders and arms, this would result in my napping for 10 mins or so, and then I would be fine again about an hour later.

I will be interested to see what happens next week as I am back at work so I am going to monitor my fatigue levels then., I am also going to be wearing my bra which I have not done so far, just the ctton bra vest that my friend bought me.  I am only doing three four hour days a week at the moment so will have the afternoons to rest and restore.

I am on tamoxifen and have been for 8 weeks now, apart from a lovely red flush in the morning and a bit of constipation in the early days which I have sorted by changing my cereal, so far so good.  The biggest thing for me is actually taking tablets as I do not like them, but I know this is for my own good 🙂

Helena xxx

[Sue H-S]

Hi ladies,

I read your posts and can feel your anguish, concern and confusion about the various ways you feel.

The diagnosis is such a traumatic event and that alone will take time to adjust to and come to terms with. So many questions might go through your mind - why me, what have I done? It is not you or what you have done - unfortunately it just happens, that for some of us a cell in our body turns 'rouge' and causes us to have breast cancer. Some of you may feel that your body has let you down. That your instincts you had about your body can no longer be trusted, which in turn can lead us to distrust our body and ourselves. And we might worry that we can never trust our body or ourselves again.

Often, the answers you may seek are simply not out there. This is a great place to share your thoughts, concerns and worries - as we can share our personal experiences. And in these shared experiences you might find the answers you might be looking for. So a big hug to all of you. You have experienced a major trauma - give yourself the space to deal with it. 

The waiting for results and commencement of treatment does seem to be the worse time, as we naturally want to fight what is threatening us straight away.

A 2-3 week wait for results or referrals seems to be relative common. However, if the wait of finding out your next step should exceed this, may I recommend that you call your Breast Care Nurse and start pushing for answers. Your Breast Care Nurse is your 'key worker' through this journey, having access to your records and your multidisciplinary treatment team.

Not having lymphatic or vascular involvement is such good news, as it makes the likelyhood of 'rouge' cells having spread and settling elswhere in your body, so much lower. This bodes well for the future.

Radiotherapy can be challenging for some, but it is doeable and I am sure that Ladybowler will be happy to share her experience with you. It is important to gain the right advice with regard to looking after your skin during and post radiotherapy treatment. There is much advice on this site. Unfortunately the professionals are a little lacking in that department, despite all. E45 is rarely going to do the trick in keeping your skin well.

Hormone therapy, whichever it may be - Letrozole, Tamoxifen, Anastrazole, etc. is a great way to prevent recurrance in other parts of our bodies. Unfortunately is brings its own challenges for many. Much help and advice can be found on the relevant Hormone therapy threads. It may be good to keep in mind, that most post on the threads do so, because they have experienced challenges - it is rare to see posts of those, who are doing well on these therapies. So please don't let Hormone Therapy scare you - should you have explored those threads. 

Hugs

Sue x

[Emily T]

More than hard Rach. X

[rach1b70]

I know Silver Lady.

At the moment, I don't feel I can plan anything as treatment lengths will be vastly different.

The waiting is so painful and I feel my OH just thinks I need to snap out of it and just forget about it until I know.

Hard when you are living with it xxx

[Silverlady]

Hi Rach,

My diagnosis is 4.7cm grade 3 - had a mx, no node involvement or vascular invasion, so currently cancer free. 

I should be jumping for joy, which I was initially, but now like you and the others I am just in limbo and a bit numb. 

I know I am having chemo, I was told at the results of my biopsy. But, I have now been waiting for an appointment to start since 22 Dec.  I think knowing I have treatment still to complete and you ladies not even knowing, is what leaves us all feeling flat and down.

I can't believe I come home looking forward to receiving  a letter which ultimately will poison my body and make me unwell.

[rach1b70]

Thank you Helena,Jayne and Emily

It's horrendous I thought I felt ok but now I'm back to where I started.

Diagnosis so far

9mm tumor removed. Grade 1 ER+ HER2 borderline. No node involvement.

Waiting for results of fish test and to see oncologist. My mind is yet again, all over the place.

Love and strength to you all 💕💕💕

[Emily T]

I know EXACTLY how you feel, mine was grade 2, 15mm, I have same treatment as you and waiting for oncotype to see if chemo is recommended.

I've been waiting nearly 4 weeks so far for oncology and I'm still waiting! I feel flat and lost at the moment. So I totally empathise. Xxxxx 

[Jaynes1208]

Hi Rach,

Yes, really good news about the nodes and margins etc, but it doesn't alter the fact that you're still on this roller coaster!  You still have appointments, and treatments and the rest of your life to face. It's hard to be whooping for joy when what you really want is to not have breast cancer at all!

We probably all feel the same, I know I get it completely.  It's a new language, new feelings and never completely goes away.  

I've my results a week today, and think/hope/dread, all at the same time, that I may be in a similar position to you.  It's not easy.

Just feel how you feel, from one moment to the next!  I have moments when I feel really happy and grateful it was found, and other more difficult ones.  Knowing you are all out there and understand helps.

be kind to yourself,

Jayne

xx

[ladybowler]

rach

That is good news, having got clear margins round the lump and it has not gone into the lymph nodes. So as you say it looks as if rads and tamoxifen.

I know when I had the same result I was so relieved but really did not understand what it meant that it had not gone into the lymph nodes, there was an awful lot to take in, and in the coming days you will digest it all.

I think sometimes we get ourselves into a position where we are expecting "bad" news that when we are told it is not as bad as we thought it might be there is this sense of relief but also this feeling of being lost and not sure what to do next.  Perhaps the confusion you feel is due to this question of the borderline test, but you will have that result next week when you see the oncologist.  What you need to do in the coming days is to write down all the questions, no matter how small, to ask them.  I even wrote a question down about whether if I had a cold would that affect my having radiotherapy.

To let you know mine was 17mm and grade1 as well.  I di have tubular breast cancer which is a different form and went on to have radiotherapy and am on Tamoxifen for 5 years.

Sending you a lovely squishy hug

Helena xxx

[rach1b70]

Good news so far. 8mm grade 1 lump removed, so it was very tiny. The cancer had not hit the lymph nodes and it was removed with clear margins around it.

So far I am having radiotherapy then tamoxifen for 10 years.

One of the tests has come back borderline for chemotherapy, so when I meet with the oncologist next week they will decide what way to go.

More waiting, but knowing it has been removed and not gone any further is a relief, but this morning, I am not sure how I should feel. I know I have had the best possible outcome so far and have been extremely lucky so should be jumping for joy. But I just feel a bit lost and confused and I don't know why.

Has anyone else felt like this ?

Xxxxx