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just diagnosed, questions...

11 REPLIES 11
ljmostlyautumn
Member

Re: just diagnosed, questions...

Hi Goldengirl - so sorry you are going through all this. You are naturally anxious and in need of info - and I remember how helpless I felt not knowing what options were or anyone that had been through it.

 

You asked about recon. For my initial mastectomy, i didn't want recon straightaway as i was having chemo and radio and I didn't want any delay or more time in hospital away from my 3 little girls. However, when all treatment was finished and I tested positive for BRCA1, I had a second (prophylactic)  MX and bi-lateral (both sides) recon at the same time. I have had 3 types of recon: DIEP, Tram,  (both using my tummy muscles and fat) and later, a Lat Dorsi recon (using back muscle). My story is on Amazon: 'The Big C in my Bra - Dealing with brCa' and it describes the whole lot, from diagnosis to nipple tattoos.  I hope it helps you through. Happy to answer any questions at all, anytime. xxx 

goldengirl
Member

Re: just diagnosed, questions...

Hi Ive got Invasive lobular cancer left side and just had biopsy of an undeterminabke on right side . had  a lymph node biopsy left side and it came back reactive which they say may be because of breast biopsy. Anyone have ideas on this? Also has anyone had reconstruction  at the same time as mx? Really really want to hear from anyone who's done this and what type and what the thought. also did you need rads and did it affect result?? AHH so many ???s I don't know how to decide! I'm so anxious and panicky -  it comes and goes and yet I'm trying to stay positive and focused! Love to all out there in this very large boat! x

Jo_BCC
Member

Re: just diagnosed, questions...

Hi Helenr51

Welcome to the Breast Cancer Care discussion forums, you've come to the right place for some good, honest support from the many informed users of this site.

While you are waiting for replies, I have put for you below the  link to one of BCC's publications you might find helpful. Also our helpline team are just a free phone call away, 0808 800 6000 lines open Mon-Fri 9-5 and Sat 10-2

 

http://www2.breastcancercare.org.uk/publications/treatment-side-effects/your-operation-recovery-bcc1...

 

Take care,

Jo, Moderator

helenr51
Member

Re: just diagnosed, questions...

I had my Mastectomy 13 days ago and I am still in a great deal of pain but like everyone else the waiting for the body and bone scans are the worst. If only it could be fast forwarded it would be fantastic. I keep reading stories from others diagnosed with breast cancer and sometimes it helps and other times makes things worse. Just having the chance to talk to others going through the same as you means so much. It's been found that one of my lymph nodes is also cancerous and I keep reminding myself that it's only one and other times I fear that it may have spread further if it has already reached a lymph node. If anyone wants to talk further I'm here x

Alis531
Member

Re: just diagnosed, questions...

Hi Roosmama,
I'm pretty much in the same position at the moment, I'm 29 diagnosed two weeks ago. Due to family history have decided to have a bilateral mastectomy which will go ahead on the 17th of September. Other than that I pretty much know nothing else at the moment!!
I'm waiting on the results of my bone and CT scans to see if I have anything anywhere else. Aside from the shock of diagnosis, impact on my life,family and friends and being scared of what's ahead of me I'm struggling the most with not knowing anything!! I'm such a pro-active person but this waiting game is making me feel even more useless/helpless.

If it helps, I just want you to know you're not alone xx
Guest user
Not applicable

Re: just diagnosed, questions...

Thank you so much for your replies. I so appreciate hearing from  people who've been there. You're right, the wait is by far the hardest part so far. I'm genuinely not afraid of anything I've been told so far apart from the fear it could have spread. I'm almost paralyzed by fear when I think about it. 😞  x

 

Dogmad84
Member

Re: just diagnosed, questions...

Hello, Roosmama12 . I am sorry you are going through such an anxious time.

  I was diagnosed with PBC in August 2011.  I had a lumpectomy for a half a centimetre sized DCIS, which the biopsy discovered contained a teeny patch of Invasive cancer.  Imagine my disbelief when they found that such a teeny tumour had already spread to 3 out of 10 lymph nodes tested, so I went on to have a full lymph node clearance. Like you, I felt  fit and well, full of energy, which made my diagnosis even more of a shock!

Because the lymph nodes were effected, like you I also had to have an MRI scan, and also a bone scan.  I have to say that the waiting for results of the scans, to see if it had spread, was by far the worst thing I went through- even though I subsequently also needed chemo and radio. 

The surgery was quite straight forward, but it was the waiting for results [which thank god were all clear]- which were, for me, a modern form of torture!!  Family are kind and re assuring, but the angst while you wait cannot be understood unless you have gone through it yourself!! Nothing can be said to make you feel less apprehensive, can it?

I was very worried about developing lymphoedema in the arm, after the lymph node clearance- however, I was fine, and I think that  religiously following the exercises on the wall chart I was given post surgery, really helped.  Nearly two years on after the surgery, my arm, fingers crossed, continues to be fine, but  to this day  I use a pair of  small size dumbells, given to me by my daughter, daily for five minutes, and I really think that they help keep the arm supple etc.

I found it helpful to get through treatment in small steps, rather than looking too far ahead. So the first step was the surgery and recovery, then  came each round of chemo, etc.  It is not easy, but you DO get through it, and there is light at the end of the tunnel, so I wish you well on your journey- you will soon be through it.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

  

 

Sam_BCC
Member

Re: just diagnosed, questions...

Hi roosmama12

 

Firstly, welcome to the forums, I am sure you will find it a great source of information and support.

I'm sorry to read of your diagnosis, the first few days and weeks are always difficult when coming to terms with things and getting to grips with your treatment plans, etc.

As well as the support you are receiving here on the forums you might find it helpful to order the BCC resources pack. It has been specifically designed for those newly diagnosed and contains information to help you better understand your diagnosis, test results and the various treatments available. If you would like to order a copy just follow the link bellow:-

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


Also, do give the helpline a ring if you need any further support or information. They're on 0808 800 6000. Open 9-5 Monday to Friday and 9-2 Saturday.

Best wishes Sam, BCC Facilitator

Guest user
Not applicable

Re: just diagnosed, questions...

Hi Roosmama - What a scary time for you, it does get easier when you know exactly what you're dealing with and once treatment is underway. As previously said, its normal to feel a bit paranoid, its because your're fearing the worst but not becuase anything is being kept from you. Keep posting and more folks will come along that can relate to you and your stage and type of treatment Hang on in there...x  

Guest user
Not applicable

Re: just diagnosed, questions...

Thank you for your reply. You have no idea how much I appreciate an honest answer. I'm scared because initially we thought it was 2 tumours as there was 2 masses on the ultrasound, one in the breast close to the armpit and one close by in the armpit. (the armpit one was smaller and more round (I take it this is the lymph node one) I had biopsies on both. To me it seems like it was a pretty big lump (although I can't physically feel it) so I guess that's adding to my anxiety. X

Boxofrogs
Member

Re: just diagnosed, questions...

They are NOT keeping anything from you, but it's quite normal to be paranoid in this way. BCN is right in telling you they will know much more about the type of cancer and what type of treatment you might need once the pathologists have studied the cancer tissue. You will meet many people on here who have had node involvement, including me. I too freaked out. It was worse than the initial lump result. Anyhow, I was told the node involvement still put me in the early diagnosis camp and it didn't change where I sat prognosis/statistic wise but it did influence treatment decisions. I had a clearance and am in the middle of chemo. If there hadn't been node involvement, I think the treatment would have gone on to hormone after chemo but I now have radiation to look forward to. All of it so far has been very doable. You will get through this.
Guest user
Not applicable

just diagnosed, questions...

Hi all, I was pretty much told I had BC a week ago when I had a scan, mammogram and biopsy in hospital. I'm only 30 so they were surprised, as was I. I went back yesterday to be told it is BC in my left axilla (not sure of spelling) and in my lymph nodes. I've been booked in for a lumpectomy and lymph node clearance next Thursday. I've got a CT on Tuesday and following it all chemotherapy, radiotherapy and potentially hormone treatment. I'm gobsmacked as I feel fine! I'm trying to stay positive but obviously I have my moments. What I'm after really is some honest advice/comments about having cancer in your lymph nodes. It's that which is bothering me the most as I really don't understand what it means. Does it mean it could/would have spread elsewhere? Is it symptomatic of an aggressive type of cancer? I'm really confused and my BCN has only said they won't know properly until after surgery and CT. however, I think it must be a normal reaction to want to know everything and I'm scared they're keeping something from me. 😞 I have a 17mth old and I'm more scared of losing him than any treatments I'll be having. X