Newly diagnosed

[Sharon0569]

I received my diagnosis last week however I haven't seen a pathology report yet. I have a lump which is the DCIS and an area of micro-calicifcations that my consultant want's biopsied as well, I've had the calcifications for at least 2 years but they told me originally they were cysts. I assume I'll get the report once the full extent is known.
I'm in limbo, at the moment my treatment plan is to remore the lump and Radietherapy but depending on the outcome of the 2nd biopsy I could have a mastectomy as the 2 sites are too far apart.
Pretty scared

[Deb2307]

Hi Thanks for your thoughts, back in control. The radiotherpay seems to be going on for ever but do now have an end date 20th. Decided to take next week off work as that is stressful at the moment I have to make about 10 staff redundant so that is probably not helping. Anyway I have my eldest granddaughter coming to stay next week so planning to do some nice things. Take care everyone wishing you all love for Valentines day

[Sharon0569]

Hi Lyn,

So sorry you didn't get the result you hoped for, sending you load of love and thinking of you on the 20th. Being told you might need a MX must be terrifiying, I chose to have mine but I can say from my experience and the recon I've had, clothed you can't see a difference, unclothed my scar to me is a remider that I beat it.

I'm feeling better but tired, I'm back at work but still finding that I can't concentrate on much for too long at a time. There isn't an hour that goes by when I don't think about the Cancer, I guess it'll get longer between as time goes on.

Deb, really pleased you got the all clear, hang in there with the Radio Therapy, I'm not sure many of us remember much at some point or another, all the appoinements and results become a bit of a blurr after a while just focus on that end day when the treatment finishes and you can finally move on.

Lola, Sending you big hugs, stay strong you have a lot of treatment ahead of you, good luck with the next WLE 2nd times the charm so they say!

Thinking of all of you lovely ladies.
Sharon
xxx

[Lola65]

Hi Ladies,

I have a similar problem, although with added complications I think. I had a small grade 3 invasive ductal tumour. It was removed by WLE in January with good, clear margins all round. Great news. However, when the tumour was examined under microscope they found some high grade DCIS cells within the tumour that had extended into the otherwise clear margin, leaving only a tiny 0.5mm clearance on one edge.

I am having a second WLE to shave off some more tissue from that edge as 0.5mm is not considered a wide enough margin. I was told that if the surgeon didn't think she would be able to get a clear margin she would not be doing a second WLE as they only do second ones if they are reasonably confident they will work. Obviously, they don't always work, and surgeons can be wrong.

My added complication is that because my tumour was grade 3 invasive HER2+ I have to have chemo and Herceptin before any radiotherapy.

[Lyn1957]

Hi ladies, i didnt get clear margins surgeon wants to go in again so re-excision will be 20th Feb, such a long wait, I am so dissapointed if clear margins not achieved this time then it's a mx for me, now back on the waiting bench. So really I'm no further forward still dont have a treatment plan. I do know i'm ER+ and PR+ but thats about it.
Fab news Cheryl, I hope you are doing well. Deb maybe once you get past the first week this will start to settle down, i have been told it can be very tiring. How are you feeling now Sharon?
I hope you all continue making good progress and we will all soon be off this roller coaster. xxxx

[Deb2307]

Hi Everyone, my results came back all confused (typical of me) any way had to wait an extra week and everything was clear. I started radiotherapy this week, thought i would sail through this just like evrything else but finding it tiring and stressful which is so silly. I had everything straight in my head but it has all escaped from me. I hope everyone else is doing well and making good progress through this interesting journey xxx

[Sharon0569]

Hi Cheryl

That's fantastic news, I hope your recovery is problem free, I've had no complications so far, I'm still in a good amount of discomfort which I wasn't expecting but it's mostly down to the nerves rebuilding and normal so I'm told. Hopefully at some point soon my reconstruction will stop feeling like someone bolted a lump of lead to my chest! It's a very odd sensation that you can't really explain unless you go through it yourself.

I'm very relieved its all over, my heart and thoughts are with all those still going through diagnosis and treatment, its one hell of a roller coaster and one I hope never to be ridding again. Xx

[Cheryl17]

Hi Sharon pleased to hear all is going well. I now have had my MX and LD flap reconstruction plus implant on the 11th jan. I have just received the pathology report and i too am clear which is fantastic news. I have been told I do not need to take tamoxifen or need any othe treatment apart from annual mammograms fo the other breast which is such a relief. Continue to heal well like me you probably have been told to rest, rest and more rest. Healing hugs being sent to you. Xxxxxx


Lynne, My DCIS diagnosis changed from 5cm pre op to 9cm and was behind the nipple so lalthough I wasn't given the choice Lumpectomy or MX my consultant made the right call and took everything including the nipple. I do hope that you don't need any further treatment and my fingers and toes are crossed for you. I know the waiting game sucks and is the worst position to be in. My thoughts are with you. Please let me know.special non worry fairy dust coming to you now ....xxxxxxx
Deb how did your results go? Thinking of you xxxx

[Sharon0569]

Hi Annie,

im told that since I had a mastectomy I don't need tamoxifen. There's no sign of cancer in the remaining breast so nothing for the estrogen to feed.

I'll mention it next time I see the nurse.

[Annie22]

Hi Sharon,
Did your oncologist or surgeon talk to you about taking Tamoxifen (if you are pre or post menopausal) or Arimidex (if you are post-menopausal) - as a 'belt and braces' approach?
If you are oestrogen positive, I understand this to mean that the oestrogen could have contributed to your DCIS. Therefore blocking oestrogen production might be a good idea for the future. Obviously, I don't know what your report says, but I understand that some hospitals do this and some don't (and it all depends on your pathology report).
There is no rush to sort this out, as these drugs are long-term (up to 5 years), so if he did think you'd benefit from them it isn't something that you'd need to hurry to start taking, but it might be worth asking your Macmillan Nurse what the policy is at your hospital.
I know people who have been given the drugs and people who haven't - it is all down to the pathology. I'm only flagging this as your consultant seems to be a bit dithery.
Annie

[Lyn1957]

Hi Sharon, glad to hear you are doing well from your MX and recon, hopefully the pain will subside soon.
I'm still playing the waiting game WLE 5 days ago, have no idea whats instore for me consultant has really said much at all just i've gone from 5mm dcis to nearly 3cm which in my eyes is a big difference.
Your emotions no doubt will catch up with you once you completely step of the roller coaster.
I am extremely happy for you and wish you all the very best take care and look after yourself let your body heal.
XXXXXX

[Sharon0569]

Hi,
My MX with statice recon is complete and I'm post op by 2 1/2 weeks, still store and my armpit is very painful. After tellimg me they didnt need to check my nodes they changed there mind. I'm happy with my reconstruction, the size and shape is good. My final pathology report was nodes were clear,18mm lump DCIS high grade with estrogen positive indicator. I'm glad I opted for the MX and have received the all clear. No further treatment needed just regular mammograms.

My consultant was a little odd, he kept changing his recommendations each time I saw him, first he wouldn't save the nipple,then he said he would and on the day of surgery he changed again and reccomended against saving it. Then the length of time I have to wear a bra 24/7 goes up each time I see him, he's up to 3 months now which is fine for him as he's not the one who has to suffer the discomfort of it rubbing and pressing on sore points. He really could do with being more decisive in what is a difficult enough time already. Finally after disagreeing with the mx originally he declared the morning after the op that it was the best decision after all as my breast was unusually dense which concerned him.

It feels like the last 2 months have been a whirlwind and I must have stepped into someone else's life. I don't think the full impact has hit me yet, I've barely cried. I'm sure at some point the emotions will catch up with me.

Good luck to everyone about to start treatment or still going through it and don't let the roller coaster carry you through a treatment plan your not happy with stick to your guns and insist on what you feel is best after all it is your body and mind who else knows it better than you.

X

[Deb2307]

Hi, funny how life gets away from you at times, I went for a mamogram as I had an absess in the right breast, which they dealt with promptly but they discovered 2 areas on the left side which I had to have biopsies on. One came back benign the other DCIS. Since then I have had surgery and I am now waiting for the results, hopefully this week. Be nice to yourself, no-one said we had to cope with everything all of the time, do the best you can and accept support when you can.

[Sharon0569]

Hi,

Well the 2nd biopsy showed the other cysts in the same breast were benign thankfully. I asked a few questions about my diagnosis and found out the lump is 1.3cm and High Grade. My consultant reccomended a WLE and possible Radiotherapy after but also said that the radiotherapy might not be required and when I asked about checking the lymph nodes he said it wasn't necesary.

I have asked for a mastectomy, the fact its high grade and at this stage he's not talking about anything other than a WLE concerns me. I don't want to risk it returning and also do not want the stress of worrying everytime something doesn't feel right.

I'm seeing my BCN on Weds to discuss the Mastectomy and reconstruction. Date is provisionally booked for Jan 3rd.

[Jacx]

Hi Sharon0569, yes, you can ask for a mx instead of WLE. After I had time to step back and think about my diagnosis and treatment plan that had been planned for me, I decided to ask for Mx instead of WLE (Nov 2012).
For all the same reasons as you, I rang the breast nurse and she spoke to the surgeon on my behalf to request a mx. BCN thought he would want to see me to discuss it in more detail, and I suggested a 'telephone appointment' with him so it wouldn't delay anything. As it turned out, he was very happy to do a mx, I suspect the surgeons are conscious of trying to preserve our breasts as much as they can, but the decision should include your views as well.
A friend said to me....'if you don't ask, the answer will always be no'
Good luck with your treatment.
Jac x

[Sharon0569]

Hi,

Thanks ladies for the kind words and encouragement, trying to stay positive for those around me however i'd quite like to just curl up and feel sorry for myself 🙂

I'm sure as you say once all of the results are in I'll feel a lot more positive.

Good luck with your treatments fingers crossed for you all.

[Jus]

Hi Sharon,
I'm really sorry you have had to join us and I completely understand where you are.
I was diagnosed 3 weeks ago with a tumour of 23mm x 28mm with an area of malignant calcification directly behind. In total both bits together are 58mm (from the front to the back of the breast) and I am only an A cup size. I hadn't even felt a lump in my breast only a lump in my armpit, which turned out to be my lymph node (which also showed positive for cancer cells). It means I will have to have a mastectomy and lymph node removal after I have had chemo which I am staring on Friday. This doesn't mean yours will be though. Sometimes our imagination when we don't know what's happening is worse than the reality
I know the waiting between appointments is dreadful as we're always worrying about what we will be told but Revcat is right when you know exactly what is happening and you have dates for treatment to start it feels more manageable. You are not alone and the people on the forums on this site really help you to feel that. None of my close friends of my age have gone through this and it has really helped to talk and ask questions on the forums.
I hope you get answers swiftly and that it is good news. Keep your chin up.
Jus x

[Cheryl17]

Hi Sharon0569. I too am on this part of the journey. I was diagonsed with DCIS in two sites intermediate to high grade and had my SLN last Monday. I am still tired and sore bra less for most of the day. Results day tomorrow, I am praying the nodes are clear but the waiting is so tiring and worrying. My consultant advised me the way forward was to have a mx and immediate reconstruction. Good luck with your results xxxxx big hugs xxxxxx

[Sharon0569]

Hi,

Went back to the hospital last Thursday and had a SNB, awaiting the results but probably wont hear until next week. The waiting is the hardest thing, I'm trying to keep positive but finding it hard.

Is it normal to feel so tired, i've not had any treatment or anything to make me feel overly tired but I feel totally drained. I've put a lot of it down to not sleeping right through the night, I wake several times at the moment.

Can anyone tell me can I opt for a mastectomy with reconstruction rather than WLE if it's not what the Doctor reccomends? I'm concerned that given I have these calcifications already it could come back, I was told that the calcifications put me at higher risk anyway. I spoke briefly to my nurse and she seemed to think it was a knee jerk reaction.

Thanks

[RevCat]

Hi Sharon, so sorry you have had to join us, and sorry too that your post has not had many replies too - there are a few very busy threads just now, and htings do get missed.

The early days are by far the worst - not knowing, imagining, fearing the worst. It may sound daft, but once you have a treatment plan it will get more copeable, and hopefully things will get moving quickly, so that things get sorted and you can move forward.

My coping strategy in the early days was to keep busy and distract myself, but you will find your own way... cry , shout, spend, read, whatever it is (within reason 😉 )

Hope you get some answers from people at a similar stage soon, who will be able to give more appropriate replies. In the meantime, I'm sending you a big cyber hug

[Jo_BCC]

Hi Sharon

Welcome to the Breast Cancer Care discussion forums, where the users of this site have a wealth of knowledge and experience between them and will be along soon to offer you support.

In the meantime I have put for you below links to some of BCC's publications you might find helpful. Also our helpline team are just a free phone call away if you need someone to talk to in confidence, 0808 800 6000.

http://www2.breastcancercare.org.uk/publications/diagnosed-breast-cancer/breast-cancer-you-diagnosis...

http://www2.breastcancercare.org.uk/publications/diagnosed-breast-cancer/resource-pack-primary-early...

Take care,

Jo, Facilitator