Advice

[Ella]

Hi I,ve just come across this site and would appreciate some advice.I was diagnosed with breast cancer in 99 at which time had a partial mastectomy followed by Chemotherapy and 5 weeks of radiotherapy Lymph nodes all removed and all clear In July of this year i was told that the cancer had returned A local recuurance It was grade 3 ER - is Her2+ I,ve had a full mastectomy and Tramflap reconstruction I was told i would have to have chemo as well My wound has been very slow at healing and my onc is not keen to start any treatment until it show some signs of healing and it is now 11 weeks since the operation I have to now go back in to hospital to have some skin grafting done . I have been told that the benifits of having chemo are very small as they have taken away all the cancer and i get the feeling that the longer this goes on the less chance i will have of any followup treatment Herceptin is not an option at the minute unless i,m prepared to pay at least £25000 for the drug Ella

[jsattaw]

Hi Ella --

Sorry you have to go through this again and that your reconstruction has not progressed more smoothly!

My diagnosis is very similar to yours -- first dx in '98 and a local recurrence this summer. I had a mast -- am ER+/PR+ and Her2+. I did 4X taxol and just started Herceptin. I did not have any node involvement either time.

From my reading, the benefit of chemo alone is anywhere from 15-25% reduction in recurrence and if you're able to get Herceptin, that combined with chemo could deliver another 10% or so.

You didn't mention if they were able to test your lymph nodes or not and whether you had any involvement. I feel like the chemo is giving me reassurance that any remaining cancer cells were killed -- but as you know, every case is different and you have to rely on your intuition and instincts about your care.

Good luck with the skin grafting --

Jill

[Unregistered Ella]

Thanks for replying so quickly
My lymph nodes were all clear. I,m sorry to hear that you have had to go through this again It seems to be harder this time around I had felt that i had beaten it after the 5 years and was totally unprepared for it.It is really great that we can find out information on the internet and to find the support we need at a time when we need it
I was 39 when i was first diagnosed after discovering a small lump in my breast and was told by the onc on my 40th birthday that it was indeed cancer. So there is no way i will be able to forget my first experience with cancer. I going to insist on having some follow up treatment as i feel we need the reassurrance that we have done everything possible to prevent another recurrence and i would not like to have any regrets later on
Thanks again

[Christine MH-UK]

Hi Ella,

Where are you writing from? I ask because things seem to be moving forward in the UK, at least in England, so I don't think you can automatically assume that the you won't be able to get herceptin. As you may have heard, the NHS in Cornwall and Devon and West Yorkshire seem to have just recently agreed to fund herceptin for early breast cancer case that would benefit from herceptin, which is a matter for your oncologist.

Best wishes,

Christine

[Lyn]

Hi Ella, I wouldn't be comfortable being HER2 tested and being positive and not have some form of cover treatment. It is true that a lot of BC surgery can get a clear margin, but the HER2 is a bit scary as we are supposed to have a more agressive form of the disease. I have had a close friend not make it through this, she was treated a year before me in 1997 and they only wanted to take the lump but she insisted on the breast and the lymphs were clear, she had no treatment after that, sher was not tested for HER2, subsequently the following year she developed bone mets and then brain mets, she passed away 3 years ago now, at the same time I have another friend who had the mastectomy and no follow up treatment and she is well with no recoccurences, it seems to be the luck of the draw, this disease does not discriminate so I would feel better if all stops were put in place before anything gets out of hand. Hope this helps, I had a radical mastectomy, chest and pectoral muscle removed and 16 glands all positive, I have been on Herceptin for 4 years now and it has definately slowed down my original agressive cancer. Many microscopical cells call get into the blood stream during surgery and remain dormant until something triggers them I don't want to scare you but at the same time none of us can remain complacent. I hope it all turns out for the best for you, feel free to ask away if you have any doubts.

Love & Hugs Lyn