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My journey so far

14 REPLIES 14
Kip
Community Champion
Community Champion

Re: My journey so far

Hi,  it doesn't matter how old your boys they are still your children and we'll always worry about them..

My cancer was ductal and at surgery he took the sentinel node and 2 more just because he said they were all very close together and right by his finger tips.  I dont have any problems with the clearance area,  i had my masectomy scar reopened so i just have one continuous scar which stops where my bra ends near my armpit, so you cant see anything under my arm. Only thing is its permanently numb in the armpit and back of arm,  but not a problem.

I think the testing you mentioned is called Oncotype testing?  It gives you a figure which determines whether chemo would benefit you or not.  I never had it as i had 3 +nodes so had chemo anyway.

Just focus on the op for now.. Easier said than done i know.   A good tip... Get a triangular pillow for propping yourself in bed, and i was also given a heart shaped litte pillow to tuck under the op armpit as it applies a little pressure on the  wound which help the scar flatten but also gives comfort and support to your arm.  You  need a cushion to put under your seatbelt for journey home too.

Love Kip 

Chris631
Member

Re: My journey so far

Hi Jewls

 

thank you so much for you kind message, I know your right about having a bit more piece of mind once I have a plan in place, but it's getting to that stage. At the moment I can't seem to think that far ahead my head is a bit of a mess at the moment. My husband, sisters and friends have been a real good support don't know what I would do without them. I have read a number of posts on here where people have come out the other end, it I know it's a long slog and probably not going to be a walk in the park. I have my mastectomy on Tuesday in hops for two days then have to wait until the 23rd for results of lymph node clearance. Hopefully my head will be in a better place once I have them, just keeping my fingers crossed that it's good news this time. Hopefully no more shocks.

 

its the waiting game, I had never really been a patient person. Am doing some meditations hopefully that will help. 

 

Agaon on thank you for sending me a message they are a great support to me 

 

Christine ❤️

jewels46
Member

Re: My journey so far

Hi Chris631,

i can fully understand how you feel but please remember things will get better.  I had to have a mx after my first op as well as my tumor was much bigger than thought.  I had it done in July then radiotherapy in Sep which finished a few weeks ago.  Yes it is a shock but somehow our brain gets used to it and we carry on.  

Your still in shock now and I remember that awful feeling .  Try and focus on getting through each day and you will find the days get easier.  Do you have anyone at home with you? How old are your sons? 

 

Chris631
Member

Re: My journey so far

Hi Kip,thanks so much for getting back to me. My boys aren't really children they are 31 & 27, the oldest one is married but no children. My youngest is working in Amsterdam, it's him I worry about as he has no support mechanism over there. The consultant only took the sentinel node for biopsy, really can't understand why he didn't take any more to check. I have got my head around the mastectomy but it's the lymph nodes that are really bothering me. I just keep thinking if it's in all of them. I probably won't have some pice of mind probably until I get enresults on the 24th October. It's good to hear that you mastectomy went well, keeping my fingers crossed that mine does. My consultant has mentioned tissue possibly being sent to America for analysis to see whether I would need chemo, have you heard is this?. 

 

Was yours lobula?

 

No reconstruction - further down the line he says if I want it. have been told I will probably be in hospital for two nights.  

 

Are you having any trouble with your node clearance?

 

No scan been offered yet as I am getting the op done privately, however after that will be put on to a NHS oncologist so not sure what will happen there.

 

thanks again 

Christine x

Kip
Community Champion
Community Champion

Re: My journey so far

Hello Chris631, omg you sound as though you have written my story!   When I was originally diagnosed I was told the lump looked about 20mm and the nodes looked clear from ultrasound, so probably a lumpectomy and some radiotherapy.   After having an MRI I was told I had some further areas of calcification and that I would need a mastectomy.   I was ok with that as I had kinda wanted the whole thing gone anyway.   At surgery I had the sentinel node biopsy (they took 3 altogether) but like you I was sure it would be clear.  However, after op I was told all three had some small amounts of cancer cells in them and the lump was 55mm!  Total shock doesn't cover it!   I was like you "oh my god this is it".   Its very hard when results change but I have come to learn this is quite normal and until they have "been in" things can and do change.   My team explained that just because its in the nodes it doesn't mean its elsewhere they are just doing their job and catching the cells!   I had the full clearance after I had had chemo, the removed levels 1 and 2 which only had 4 nodes in and all of those were completely clear so that was good news too.  

Regarding the mastectomy - are you having reconstruction at all?  I didn't but its not everyone's choice, I went through all the options with my BCN and she showed me photos of various procedures and then I decided to remain flat.  I am completely happy with how I am now, the surgery was quick and not that painful, I was down in theatre at 9am and home again by 3pm on the same day.   I had my node clearance on another date and again, in and out in a few hours.  Your arm is stiff and you have to do exercises to get the movement back but I now have full movement and its all ok. 

Have you been offered a CT Scan, Bone scan?  If they do, don't panic (I did) its all standard procedure to check everywhere else and doesn't mean they think it has.  

I had chemo and radiotherapy too, so don't be alarmed if they mentioned these as well.  Chemo is the biggest scariest monster you can imagine.. but in reality it was doable, I managed to work everyday from home, still went out and about and only had a few days each cycle (every 3 weeks) in which I felt a bit rough.  So if it comes to that you will be able to do it... there will be ladies on here going through it with you too.  I've made some wonderful friends from my chemo group.   Radiotherapy was pretty straight forward, just a pain going to hospital everyday for a blast for 15 minutes.  Just some slight redness to the area but all gone within a few weeks.

For now, just take each step at a time, until you have the full treatment plan and you start on it you will feel scared and panicked.. its so much easier when you have begun and feel like you are doing something about it.  Just remember there are many many many women with lymph node involvement who all make a full recovery...and with large lumps too.   When I voiced my concerns over the size of mine my nurse said "doesn't matter its all gone now". 

How old are your children?  How are they with this?   Mine were 13 and 16 when diagnosed and my fear was for them too.   They have coped so well, just been honest but positive with them and not kept any secrets. 

Message me anytime you can... remember to ask all the questions you need at your hospital appointments and write any down as I go blank when I get in there.

You'll get through this..

 

Love Kip - Almost 1 year post active treatment and 1 clear mammogram later!

xx

Chris631
Member

Re: My journey so far

Hi kip I hope you don't mind me messaging you, but you seem to have been where I am now.  am in total shock and can't stop crying. I had a mammogram, ultra sound and MRI and was originally told that my lobular breast cancer was about 4 centimeters and the the consultant said he did not think it had went in to the lymph nodes so I had a lumpectomy last Thursday and had the mind set that it was going to be ok with some radiotherapy after wards because they hopefully had got clear margins. I have went back tonight to see my consultant who has confirmed that the tumour was actually 6 centimeters and it was in one or two of my lymph nodes as he felt the others and didn't think there was in any of them. I was absolutely shell shocked. He has said because the tumour is the size it is he wants to undertake a mastectomy next tuesday and will remove quiet a number of my lymph nodes knowing as a clearance. He has also said about having radiotherapy afterwards. It's like my world has come crashing down. I keep thinking that's it I am going to die and not see my sons settled with families of their own. I am shaking all the time and can't stop crying. Please any advice on this would be greatly appreciated as I don't know if I can cope with this. I just keep,thinking it has spread to other places in my body, Any advice would be gratefully received thanks

jewels46
Member

Re: My journey so far

Hi

just to let you know I had my first radiotherapy today and it was fine you don’t feel anything I was just very cold.

i did get a bit teary before I went in but that’s just from being so overwhelmed by this whole experience.  

I hope your ok do you have any dates yet to when you will start xx

Recnac
Member

Re: My journey so far

Hi Jewels

I really identify with your journey and I wasn’t told about Oncotype until they’d sent it. It felt like I’d been diagnosed all over again. Like you I’m waiting for radiotherapy and it’s going to be 13 weeks since surgery. I’m terrified and feel like I’m going mad. It’s not much help to you really but your post made me feel less alone. Hope everything goes well for you. Xx

Kip
Community Champion
Community Champion

Re: My journey so far

That's great news Jewels,  one less thing to worry about.  Xxx

jewels46
Member

Re: My journey so far

Hi kip, just to let you know the BC nurse got a doctor in to check my breast for me and all ok.  Also my radiotherapy starts on 5 sept so as good as can be expected.  

Thanks again and enjoy your weekend. Xx

jewels46
Member

Re: My journey so far

Thank-you kip it’s good to chat to someone who understands xx

Kip
Community Champion
Community Champion

Re: My journey so far

Hi, I remember the total panic and fear at the beginning.  Once I started treatment I felt more in control.  I have children too 17 and 14, it's hard to keep it all together for them but I was told to be open and honest but positive with them and they were fabulous.  In terms of rads,  I didn't find them a problem,  a pain going every day but the procedure was quick and painless.  I had a slight bit of burnt skin, bit like sunburn so stock up on something like aveeno creme and keep applying every day.

I'm sure the other boob will be fine.. But just remember you've got rid of the lump and it hadn't spread... . Take care and let me know how you are.

Kip

jewels46
Member

Re: My journey so far

Thanks kip, my heads all over the place I’ve not even started radiotherapy yet have my planning meeting on Thursday after seeing BC nurse .  Feel like I’m back to where I was when first diagnosed.  I’m 47 with 3 children 12, 20,24 and it’s hard to keep and carry on as normal I just want to curl up on my own . Started tamoxifen 5 days ago and started period today so that’s not helped and I thought my period might stop although consultant did say not necessarily.  My B C nurse is booking me into a moving   Forward course after radiotherapy which I will attend,  just really hoping nothing in the other breast xx 

Kip
Community Champion
Community Champion

Re: My journey so far

Hi jewels,   sorry to hear you are having a tough time.  I was diagnosed April 2018 having found a lump.  I too got told it was smaller than it turned out to be and had mx.  Unfortunately also turned out to be in my nodes too so had them removed and chemo plus rads.  It's a hard time once treatments ends to get your head in a positive place.  I have constant aches and pains and always fear the worst.  However,  I've attend a moving firward course which really helps and I chat on here when the worry gremlins set in. You are doing the right thing by getti g your nurse to check you over.. The peace of mind d will help hopefully.  I've had a clear mammogram in April and that was quite an emotional time.  It really is a rollercoaster at times but we have to let the emotions out and try to find the new us in all of this.  There's no quick fix but with time we will get there.  Don't Worry alone.. Come on here and chat...

Kip

jewels46
Member

My journey so far

Around Easter time I found a large lump in my breast .  Had mammogram which didn’t really show nothing but ultrasound saw small grey area two weeks later invasive lobular breast Cancer Care confirmed.  Was told this type of cancer hard to see so sent for MRI scan.  Two weeks later  lots of anxiety/ aches pains in that time.  Scan confirmed cancer to be 1-2cm.  Had operation to remove cancer and test nodes.  Not good news cancer much bigger than they could see in scans so will need mx but not spread to my nodes. Panic set in again and lots of shoulder pains to was sent for chest  CT scan.  Worst week of my life waiting for results which I had to chase up but thankfully clear.  Had mx which physically went ok but mentally hard.  My. Tumor went off for onco test in America to see if chemo would benefit me.  Was told score was low and I just need radiotherapy.  Was ok for a week or so but now have this fear that it’s in the other breast, feel like I’m going back to square one with panic and anxiety.  Rang breast care nurse she has agreed to see me Thursday morning to check breast.  This rollercoaster is never ending I really hope to get off soon.  Xx