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Winning an oscar

6 REPLIES 6
Member

Re: Winning an oscar

Know exactly how you feel.  I too am desperate. I had batwing mammoplasty on 29th October and SNB where they removed 2 nodes.  One was positive so I now have to wait until 29th November for axillary clearance and alsothey found some suspicious cells next to the tumour which they are also going to remove so the wound will be opened again when it is just healing.  I am told it is stage 2 grade 2 and that it is early.  How can it be early when it has already spread to lymph nodes.  I am too strongly oestogen positive and HER neg.  I feel like I am on death row and I am sorry not to be positive but I have tried and then something else happens to knock me down again

Member

Re: Winning an oscar

Hi Sunbeam.

 

you are not alone! I had my mastectomy on the 26th October. A grade 2 measuring 4 cms. I have had the drains out but over the weekend seroma has formed. I couldn’t get up to the hospital Friday afternoon before the nurse went home so couldn’t get it looked at. I’ve got an appointment Monday afternoon where I’m hoping to hear what happens next. They had difficulty getting the lymph nodes so it feels really uncomfortable and the nerve pain is not good either!  My hormone scores were high too. I’m actually fed up with people telling how well I look! How am I supposed to look? I won’t tell you not to stress because you will. It’s all such early days, everything happens relatively quickly so you don’t have time to get to grips with what’s going on. You’ve had the surgery, it’s out. The next bit is hopefully belt and braces.

 

Julia xx

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Member

Re: Winning an oscar

Update, mastectomy and lymph node clearance went well, 3 weeks later still healing and seroma drained 4 times.
Now got full story of it, so it's grade 3, was 23mm, stage 2, 3 lymph nodes, Her2 positive and oestrogen positive.
Don't think I can think positive any more. It's feels like basically waiting for it to spread. It's been untreated by chemicals for almost 10 weeks now and it's another three at least before I may be starting. I feel my future slipping away rapidly. I examined myself religiously but only found it when I had a strange sensation reaching out when lying down. My gp only felt it when I was lying down too.
It hurt so much to see my daughters in distress when we finally told them after I'd had the op. My husband is exhausted and I feel so helpless. He needs to work for another two years until our mortgage is finished but I would get more comfort with sharing time with him.
I'm sorry to bring anyone down reading this. I've read about stress increasing oestregen levels, food that mimics oestrogen, food than can interfere with treatment being effective because of the similarity in chemicals to those the chemo is trying to target and the same holds for the Her2.
I'm stressed and not sleeping so even more oestrogen to make the cancer cells grow.
I'm overwhelmed.
Community Champion

Re: Winning an oscar

Hello Sunbeam,

Sorry to hear about your diagnosis. It can be so frightening and overwhelming initially.

I wanted to wish you well and say beware of Online calculators! For example, the Nottingham Prognostic Index could give someone a poor outcome score. However, this is a score without other treatment such as chemo, radio, hormone etc thrown in. If someone did not realise that then it could be very upsetting! If the full details of the tumour are not known, for example, how many lymph nodes are affected, then it would also be more difficuit to make apt calculations. One calculator that may be used is called NHS Predict. Again the full details would be needed prior to it being of any predictive value.

The BCN maybe isn't being cagey but probably does not want to speculate until the tumour characteristics and lymph situation is more definite. However, as you say it is oestrogen positive, grade 3 and has spread to lymph nodes then based on that, it may be that chemo, hormone and (if post menopausal) bishphosphonate treatments are recommended afterwards. Radiotherapy can also be a possible consideration with mastectomy.

However, this is speculation and may seem mega daunting at the moment. I speak from experience of going through all the mentioned treatments with the addition of Herceptin injections for a year as I was also HER2+. Based on that experience, I would say, get on with enjoying your daughters wedding preparations and have a bleeding good time on the day. What a lovely thing to serve as a distraction and to look forward to at this time so don't allow bleeding BC to spoil it! By the way, I also kept things close to my chest (!) for a time and only told family when I felt I had to.

Best Wishes to you and your family,
Chick 🐥 X
Member

Re: Winning an oscar

All the best for the mastectomy, I had mine 4 weeks ago, told them no plans for reconstruction ever - they do a slightly different op if you tell them that in terms of not leaving spare skin etc. To some extent they can't give you a definite until they've removed all the lmph nodes and looked at them under the microscope.

I have to go back to get my lymph nodes out as some showed up on the sentinel node biopsy. The MDT give recommendations, but you can discuss stuff with them and uultimately it's up to you what you go with. You can ask them about risks and benefits for what they are recommending.

Hugs and hope you enjoy the wedding

Community Champion

Re: Winning an oscar

Hi Sunbeam,
Of course you don’t want to be here, but a warm welcome & we’ve all been there.
It’s usual practice for our cases to be discussed at the MDT & as the whole team looks at it & decides the treatment plan, I was happy with that.
There is a time & place for it, but in the early days of diagnosis, Dr Google is best avoided as we’re in shock, don’t have all the info, therefore sifting through only feeds anxiety & stress.
Your BCN can only tell you what they can, they’re not being cagey, but obviously can’t give you the full details until after the MDT.
Honestly, it does feel better when the treatment plan is confirmed & you know where you’re going with it all.
The uncertainty at this stage is horrible, but we do get through it.
There’s loads of support here, so do come & chat or vent whenever you need to.
Sending hugs
ann x
Member

Winning an oscar

Don't know how to abbreviate it all so bit long sorry. Have grade 3 currently about 25mm and also in lymph nodes but not sure how many. Got 6 out of 8 for oestrogen, I had total hysterectomy years ago with hardly any HRT. Opting for mastectomy which is on 19 October. Feel breast nurse is being cagey in telling me what happens after op. Told me they use some computer thing to help make decision. Why do I not get to be part of the multi disciplinary team meetings? Am I not part of "the team"!! Of course I looked up Dr Google and came across a calculator and itv gave a poor prognosis which has now made me feel really low. My daughter gets married on the 15th October. My husband and I have told no one but have got family together for a meal in November to tell them then. I can't get excited about wedding because cancer is just dominating our world just now. Thinking of excuses for why I'm feeling tired etc until we tell them. I'm not having a reconstruction. I feel we've told them so many fibs, with best intentions, and it's just constantly trying to be normal mum and granny when with them all. I'm just tired from it all.