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[pepperminty]

Hi ladies,

I have just had a punch hole biopsy, ultra sound  and a detailed mammogram and the nurse mentioned cancer. I have a wait for the results of a few weeks ( apparently they have a back log). I am scared of the outcome, and taking things one day at a time while I wait. Are there any useful bits of advice anyone can give me about what to ask at my results appointment? Only positive answers please as I am a bit fragile.   
I also wondered if the NHS would do genetic testing to risk assess the likelihood of cancer etc. I know Sarah Beeney had a genetic test resulting in her having a double mastectomy ( reconstruction ) and ovary removal.
I am also worried that they may try to take away my vaginal estrogen.
I am still taking it all in .

PMxx

[Epona52]

Hi peppermint,
I don't have any advice but hopefully you don't have to wait that long for results..
Wishing you the best of luck, try not to worry
X

[CLKD]

It amazes me that medics mention the 'C' word without explaining! 

Pepperminty    - mayB make a list of your concerns and contact the dept to tell them how worried you R!  Why did you have the investigations, I found a lump which required removal but at no time did the Consultant leave me in any doubt about why this was necessary; how the treatment plan would be carried out etc..

It's like they throw out these words without thinking of the consequences!!!!!  or how worried patients might be !!!! 

[pepperminty]

When you say she mentioned cancer my lovely,what do you mean?
I had a biopsy and ultrasound done,twice, first time it was a cyst the second time it was a hard fat deposit,which they removed under general anaesthetic,then tested,all was ok.
My mum,her sister AND their mother all had mastectomies,so as you can imagine I worry about it a lot but neither of my sisters have had it,so I'm keeping my fingers crossed.
Such a shame you have to wait so long for the results though 

Thank you for the reply - it was all a whirl wind and she just said it was likely cancer , and I was told 3 weeks for the results. So a bit worried .

PMXX

[pepperminty]

It amazes me that medics mention the 'C' word without explaining! 

Pepperminty    - mayB make a list of your concerns and contact the dept to tell them how worried you R!  Why did you have the investigations, I found a lump which required removal but at no time did the Consultant leave me in any doubt about why this was necessary; how the treatment plan would be carried out etc..

It's like they throw out these words without thinking of the consequences!!!!!  or how worried patients might be !!!! 

Thanks for the reply -she just said cancer and then they went onto to tell me that there are lots of treatments! I have no idea what type etc .

PMxx

[pepperminty]

Thankyou everyone for your responses , it is a very worrying time being told  most likely cancer then it is the wait. My mind has been working over time.

PMxx

[CLKD]

Very unprofessional in my opinion!!!!!  What do U plan to do to discuss your worries?  No patient in any speciality should be left without explanations!   

Continue with your VA treatment regardless of what you are told. You mentioned a nurse, was she with you throughout those investigations?  I would be contacting my GP initially to press the point of how worried this has left me feeling. The Surgery may be able to tell U more if information has been sent from the Dept after your investigations.

Take some1 with you to the GP and other appts required.  3 weeks is a long while to wait for results, sadly it's the state of the NHS in these modern times  .  Is there a PALS dept at the Hospital who may be able to ask questions if your GP seems relucantant, the Hospital should have details. PALS liaise between patients and the medics - they were extremely helpful when I required the truth when Mum was making up stories!!

Have a list of your concerns B4 you contact PALS who can tell U how they are able to help with your concerns.

Also make a note of how surgical intervention should it be required impact on your daily routines, i.e. cook and freeze; money requirements etc.. 

[CLKD]

Macmillan Cancer Support -

Because cancer can affect your life in so many ways, we do whatever it takes to give people the support they need.. This Charity may also be able to offer advice even if the test results show 'nil of note'.  Until investigations get to someone who actually knows what they are talking about, you are to this point 'cancer free'. 

Who referred you and why for these tests? 

[CLKD]

I had to get an emergency appt with the GP recently and went via the triage system, filling in a form which was shown to the appropriate medic; rather than having to wait 3/4 weeks for an appt., I was seen within 24 hours. Might B worth while you looking at your Surgery website to C if this is a requirement. 

[Terri123]

Try to have someone with you when you receive any results.  Two heads are better than one on such occasions

I've had breast cancer treatment, genetic testing leading to prophylactic surgeries and enhanced screening.  In order for genetic testing to be clinically worthwhile there's a whole protocol around number of relatives who may have been diagnosed with relevant cancers and at what ages.  Yes, maybe something to ask about at some stage but maybe deal with the current situation first.

All the best.

[pepperminty]

Try to have someone with you when you receive any results.  Two heads are better than one on such occasions

I've had breast cancer treatment, genetic testing leading to prophylactic surgeries and enhanced screening.  In order for genetic testing to be clinically worthwhile there's a whole protocol around number of relatives who may have been diagnosed with relevant cancers and at what ages.  Yes, maybe something to ask about at some stage but maybe deal with the current situation first.

All the best.

Thank you for the advice , my husband will be there. Yes one thing at a time. It is the long wait and not knowing.

PMX

[CLKD]

 

[bombsh3ll]

I'm so sorry you're dealing with this.

Do you have a family history of breast cancer?

The NHS don't usually do genetic testing unless someone is particularly young, has bilateral disease or has a strong family history.

However IF worst case it is breast cancer, you can absolutely advocate for mastectomy on the affected side plus contralateral risk reducing mastectomy, rather than just a lumpectomy. This often (but not always) avoids radiotherapy.

I had 7 affected relatives, young ages, bilateral disease, one ovarian, and I fought tooth and nail throughout my twenties for risk reducing mastectomies which I was finally grudgingly given at 29.

When genetic testing did become available, I learned I was negative, however I am incredibly thankful that I got it done, as I had large heavy breasts and the psychological trauma of having watched it rip through my family wouldn't have been erased by a negative test.

This has been tremendously freeing for me psychologically, and whilst it is not quite the same IF you have already developed a cancer, if this is early stage with no spread and you were to get both breasts removed, the physical and psychological benefits of the procedure going forward would be of almost the same value as a prophylactic surgery.

That was my cousin's situation, she had it on one side, fought for mastectomy rather than lumpectomy - you have more leverage with a diagnosis than someone seeking preventative surgery - then she fought for the other removed, which she was initially denied but stood her ground and eventually got it. The pathology showed she had also had an undetected cancer on that side too.

She now lives breast free and cancer free as well, and that was about 15 years ago.

Please try not to worry excessively whilst waiting for results. IF it is breast cancer, it is highly treatable now, and the main thing is it has been caught.

If you have daughters or sisters and cannot get genetic testing on the NHS, you can obtain this privately if you want. The cost now is a few hundred pounds, when it first came to market it was thousands.

[Mary G]

Sorry to hear you are going through this pepperminty.  Did something come up on a routine mammogram?  Most lumps are not sinister but that probably isn't much help right now.  Really they should have given you far more detail ie did they think it was a cyst, was it a liquid filled lump etc.  They would have a very good idea from the ultrasound.

I would phone one of the breast cancer charities and talk the whole thing through with someone who has plenty of knowledge and experience.

Best wishes.

[pepperminty]

I'm so sorry you're dealing with this.

Do you have a family history of breast cancer?

The NHS don't usually do genetic testing unless someone is particularly young, has bilateral disease or has a strong family history.

However IF worst case it is breast cancer, you can absolutely advocate for mastectomy on the affected side plus contralateral risk reducing mastectomy, rather than just a lumpectomy. This often (but not always) avoids radiotherapy.

I had 7 affected relatives, young ages, bilateral disease, one ovarian, and I fought tooth and nail throughout my twenties for risk reducing mastectomies which I was finally grudgingly given at 29.

When genetic testing did become available, I learned I was negative, however I am incredibly thankful that I got it done, as I had large heavy breasts and the psychological trauma of having watched it rip through my family wouldn't have been erased by a negative test.

This has been tremendously freeing for me psychologically, and whilst it is not quite the same IF you have already developed a cancer, if this is early stage with no spread and you were to get both breasts removed, the physical and psychological benefits of the procedure going forward would be of almost the same value as a prophylactic surgery.

That was my cousin's situation, she had it on one side, fought for mastectomy rather than lumpectomy - you have more leverage with a diagnosis than someone seeking preventative surgery - then she fought for the other removed, which she was initially denied but stood her ground and eventually got it. The pathology showed she had also had an undetected cancer on that side too.

She now lives breast free and cancer free as well, and that was about 15 years ago.

Please try not to worry excessively whilst waiting for results. IF it is breast cancer, it is highly treatable now, and the main thing is it has been caught.

If you have daughters or sisters and cannot get genetic testing on the NHS, you can obtain this privately if you want. The cost now is a few hundred pounds, when it first came to market it was thousands.

Hi, yes my mother had breast cancer - in exactly the same place and side. Now she tells me her side of the family - aunts etc were prone to it ! I haven't a clue what the outcome of the tests will be but, if it saves my life and more worry in the future I would rather have them removed. But I think I would consider small implants /reconstruction under advisement. I did have a DNA test done ( for health) which showed an increase in breast cancer risk . I just hope they don't take away my vagifem.  Thank you for the support. It is so isolating being told to come back in 3 weeks, you feel like your life is literally on hold.

PMxx