ADVICE wanted

Norman Dunn · New User Joined: 04 Jan 2008 Posts: 4 Location: UK

My sister who's a young 59 had breast cancer 5 yrs ago & thought she'd beaten it with the Chemo she was given. Since then she has went to the Hospital who treated her every 6 months to be checked out. Her last check was 29th Oct 2007 where she was told if you are as good as this in 6 mths time we are discharging you. A mamogram was booked for Dec 7th & by then my sister was experiencing pain & couldn't lift her arm very high. She asked if they'd check her but they said they were too busy.An appointment was made for the 10th Dec & she found they were too busy again so she went to her own Doctor. He took one look and said 'Mastitis' & my sis was delighted as she thought it was Cancer. Shortly afterwards she was breathless & had to see her Doctor who noticed her Heart Rate was sky high & she had Fluid on her Lungs so she was admitted to Hospital. Since then we've been told she has Cancer in a few places but NOT on the liver which is good news. I think they said she may have some in the bones.The cancer is not in her lungs yet but in the lining which causes the fluid to build up & make breathing dificult.

How can my sister have Cancer this badly so quickly?
Did the 29th Oct Check miss she had Cancer?
Next week she starts Chemo so hope she can beat this horrible disease.
Thank you for reading this ,
Norman Dunn
UK Citizen.

Vee Smith · Moderator Joined: 12 Feb 2006 Posts: 750 Location: UK

Hi, Norman.

So sorry your sister has this happening to her. She has done well to have had five years before secondaries. It is not likely to be something that happened quickly unless her original bc was aggressive.

Fluid in the lung cavity builds up over time until it becomes a problem, at which point someone may take notice. It was 9 months from when I first complained of breathing problems before cancer was diagnosed [bc, with lung, bone and skin metastases]. I had had breathing problems for six months prior to that. I am still here four years later, with [so far] no further problem in the lungs. The skin secondary is a bore, but controllable.

As to the check on 29 Oct., the problem with the checks is that they concentrate on the site of the original bc. Your sister must have confidence to insist that she knows that something is not right and that she wants further checks.

Which chemo are they putting her onto?

And if you feel able to say, where in the UK is your sister? [postcode lottery and all that!]

Norman Dunn · New User Joined: 04 Jan 2008 Posts: 4 Location: UK

[Hello Vee,
Thank you for your quick reply.
My sister is being treated in NE England but I better not say exactly where. We have been told the post code lottery wont affect her so no matter what the cost of drugs, she'll get them if reqd.
My wife who goes with her everytime takes notes & has wrote down Chemotherapy next week 'CYTOTOXIC' and 'TOXOL'. She mentions steroids aswell 'DEXAMETHSONE' (Hope shes spelled them correctly)

I think her cancer 5 yrs ago was aggressive but from the 29th Oct to her complaining about pain 7th of Dec is only 4 weeks. Surely its not that fast?

Her lungs have fluid building up & her heart rate is 130 beats per min. Lungs were drained but building again but hope Chemo will sort that out. She wasn't fit enough for Chemo today so is being admitted to Hosp on Monday for at least a couple of days & hopefully will start treatment.

All we can do is pray she beats it again.
Many many thanks Vee
NORMAN@Dunn247.com

Vee Smith · Moderator Joined: 12 Feb 2006 Posts: 750 Location: UK

Hi, Norman - I am afraid it does sound a bit aggressive, but they seem to be moving reasonably fast. It is possible she has some additional subinfection.

Dexamethasone is a steroid used in controlling nausea.

Cytotoxic means "toxic to cells" and is a description of the action of the chemotherapy.

I think the other word is probably Taxol, which is Paclitaxel, a chemotherapy drug, and is a taxane derived from the Pacific yew.

Useful information to have is the nature of the cancer - whether it is hormone positive or negative, and to what degree.

Keep in touch.

Norman Dunn · New User Joined: 04 Jan 2008 Posts: 4 Location: UK

Hello again Vee,
Thank you for taking the trouble to reply each time.

The nature of the cancer she had 5 yrs ago was that she was told that Tamoxifen wouldn't have worked & it was to do with the hormones.

They have done a biopsy a few days ago so it is possibly the same as last time ie can't use Tamoxifen. I'll ask my wife to verify this on Monday when my sister is admitted .

Much appreciated Vee & if I get more news next week I will keep in touch.

All the best,
NORMAN

Vee Smith · Moderator Joined: 12 Feb 2006 Posts: 750 Location: UK

Hi Norman. I have been thinking that it may be sensible for you to post on the British site for BC - in their Secondaries forum. It is not as friendly or accessible as this one, but there may be people there whose experience matches your sisters, and indeed may be being treated in same region.

The site is: http://www.breastcancercare.org.uk/bcc-forum/discussions/

At the same time, please keep in touch here. I would like to know how things go.

best wishes

Norman Dunn · New User Joined: 04 Jan 2008 Posts: 4 Location: UK

Hello Vee,
Thanks for trying to help but I dont want to get too obsessive about it. Hopefully treatment will start tomorrow or Tuesday & start working quickly. A Senior consultant who is supposed to be the top one for the Chemo & other treatments is seeing her tomorrow. All we can do is hope & pray it works like last time.Then in 5 yrs if it comes back we may have cures. I still wonder & suspect mistakes were made & she had this cancer pre Oct 29th which was missed by them. Sis said all they did to check was 'hoke & poke' her.(Ie a good feel) Surely she should have had blood tests & possibly scans every 6 mths, as we have a National Health Service here in the UK which we all contribute to.

Thanks a lot for all the trouble you've taken,
regards
NORMAN

Vee Smith · Moderator Joined: 12 Feb 2006 Posts: 750 Location: UK

We do indeed - hope it continues to work well for her. My experience is that you often have to be vigorously active in putting pressure on the system in order to ensure you get what you need.

I fully appreciate that you do not want to become too obsessed, but if you do need feedback from Brits, BCC is the place to start.

best wishes.

derekinSA · Posted: Tue Jan 08, 2008 5:06 am Post subject: Re: ADVICE wanted

Hi Norman

The idea of been "too obsessive about it" can be valid but hey, cancer advocacy and patient rights are a topic close to my heart. Often the patient is too sick to get into it with the people who are supposed to be treating them.

Ask the questions that are bothering you and keep asking, if one person cannot give you an answer, ask them who can, till you are satisfied.

Fu#$ it I always say. Make them earn their money. Your sister deserves the best possible care and treatment.

I have heard good things about patient advocacy groups in the UK so if you are not 100% happy look them up

Google “Jean Mossman” for info on cancer patient rights in the UK

That all said, my thoughts are with your sister and you on your journey. Recurrence is the scariest word for me and my heart and faith go out to your sister.
_________________
With Love
Derek

Cancer Survivor, in remission since July 07

Life coach

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