Breast cancer

Affected by breast cancer? Join this group to share experiences and ask questions to people who understand what you're going through.

To have the op or try alternative

chloecat45
Posted by

Been diagnosed with cancer, 3 small (largest 1.5cm) nodes of cancer and Grade II DCIS in right breast with pre-cancerous cells around the nodes to a 4.1cm area.  Lymph glands in armpit clear.  Seems that the only treatment on offer is to cut it out and give radiotherapy.

I was happily going down the route of “slice and burn” when I was told that a 6cm lumpectomy would be the slice (this is almost the size of a tennis ball)!  Even though a date was set for the op I had to cancel.  I felt I was being propelled into it both by the ‘team’ and family.  All were ‘for it’ and ‘doing it in my interests’ but I just could not commit.

In checking out websites I find that most of the blogs are to do with secondary cancers and I am more than ever nervous at being cut.  I have however given myself a month to check out other therapies to settle my mind.  I would dearly love to talk to ladies who have been in the same predicament.

Is there anyone out there?

.... still fighting this nasty little critter ....

dealite
Posted by

Chloecat45:
I have been reading this book, Dr. Susan Love's Breast Book, and just about finished (have had it for three days only).  Make sure you get the 5th edition published in 2010.  She covers every thing and I mean everything about breast cancer.  It shows you how to read your reports and interpret them for you.  I downloaded to my kindle app. online and my kindle.

The reason I tell you this, is because it really has told me every option out there for every type of breast cancer and every grade and stage and stats associated with treatments.

You have to do the research.  I'm still scared silly and frantic, but the knowledge has calmed me a bit so when I make a decision, I know I"ll have checked into every avenue.

chloecat45
Posted by

Hi dealite

Thanks for this.  Haven't got online app or kindle so will have to go out to shops for hard copy. 

Been going through the discussions and am learning a lot but oh so many, to my mind, horror stories.......

.... still fighting this nasty little critter ....

KateG
Posted by

PLEASE may I encourage you to go down the convential route because it WORKS. Doctors and scientists have studied for years and years to come up with this treatment. I know its not pleasant but it is doable and it saves lives.

Best wishes

KateG


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Sascha Rose
Posted by

Chloecat - you don´t say if your cancer is hormone sensitive or not?  You could ask for a biopsy to see if it is adn then ask for hormones first as they may reduce the lumps first - I note yours is IN SITU but with pre cancerous changes in nodes so there is a risk of spread over a month so a delay does carry SOME element of risk. Not trying to scare you but just to inform

My advice - get yourself a second opinion from another Oncology team asap and then make a decision.....or possibly another team AND an integrative doctor (who can tell you the best from all fields and not just the conventional)

Radiotherapy pre surgery is not advised as radiation damages tissue and causes problematic or delayed healing

I did not follow the traditional treatment route either but is it possible your response may be a knee jerk reaction to the shock? 

 

Good luck

chloecat45
Posted by

Thanks to KateG and Sacha Rose for comments.

Cancer is oestrogen receptive and could take Tamoxifen, if necessary, pre-op.  Still looking on web and two good therapies have come to light, Hyperthermia and Photodynamic - the latter looking very encouraging.  Only problem I don't think they have been used on patients in the first instance.  I am still dithering and the kind sentiments of copy letters I receive from the consultant to my doctor make me, only sometimes, lean towards surgery.  The negative effects of conventional treatment are definitely not for me! (and I say that with tongue in cheek).  It does seem that yes it does work but only after you have gone through the mill with the treatment.  Not happy with future expected outcomes though.

In the meantime, looking after health, diet and exercise (more than usual).  Funny thing though, just today I felt the area of my breast (still cant feel the lumps) and it felt cool!!!! Going to sit and watch TV now with heat pad on the area!

.... still fighting this nasty little critter ....

The Lady Muck
Posted by

I'm sorry, but I'm with Kate on this.

 

Steve Jobs didn't believe in conventional medicine, and I'm afraid it didn't end well for him.

 

Unless the lump is totally out, you are not going to know completely what stage you are at. I don't mean to scare you, but it could be worse.

 

My initial diagnosis was DCIS and  despite being enlarged my lymph nodes tested negative. I opted for a mastectomy and when everything was tested in full, it was found that I had 2 invasive carcinomas, stage 2 and 3, and in fact, 3 of 16 lymph nodes were found to be positive for tumour cells.

 

They cannot tell everything from a biopsy because they are looking for such tiny cells and it is impossible to tell without disecting the whole thing.

 

However, I do appreciate that it is bloody scary and a horrid idea - having part of your breast cut away, but the surgeons and whole Multi Disciplinary Team do know what they are doing. It won't just be one person assessing you, it will be the whole team.

 

If you aren't sure then a 2nd opinion might be a good idea.

 

To be honest, I don't fancy the side effects that will come with the chemo, RT, tamoxifen, and Herceptin that I am about to have, but I prefer the CHANCE of having the side effects, or not, as the case may be, to the other option, which is death.

 

I know what I have said is harsh, but in some ways it is pretty cut and dried.

 

Best of luck making your decision.

 

LM x

Rebecca x

ck1
Posted by

Hi Chloecat45,

Sorry to hear that you are going through such a hard decision.

After reading your post I felt compelled to respond.  When I was diagnosed with Invasive breast cancer, 2.5 cm lump ,grade 3 also with DCIS as a bonus in August this year  I was demented with worry.  I am 46 years old and I considered alternative therapies but after reading everything through MacMillan and reading other forums I felt more informed and able to come to terms with future treatments, albeit dramatic and invasive in their own right.  I have had a mastectomy and am preparing now to start chemo shortly followed by hormone therapy for at least five years.  I have a husband and a child and a full-time job.  I feel that if I did not do everything I could to beat this beast they would never forgive me and for whatever time I would have left I would not forgive myself.  The risk of trying alternative therapies, in my mind, was not worth it.  

I had an aunt who ignored all the symptoms of breast cancer and when finally seeking medical advice was found to be stage 4.  Sadly she passed away in her late forties leaving a husband and 4 sons behind.

You may see people posting on forums about secondary cancers but what you don't see are all the numerous people who have had 'conventional' treatment who are out the other side and living with no evidence of the cancer.  Most do go on to live long, healthy and active lives.

I know you want to talk to people who may reinforce alternative therapies / treatments but please consider conventional treatments because as others have stated they do work.  None of us wanted to be cut or to have our bodies bombarded with x-rays or filled with poison.  This disease will only spread if not kept at bay.  If you would like more information about the actual operation and implications of treatment and reconstructions please ask.  There are many people out there who are able to offer advice and support.

Only you can make your decision but take into consideration that many people do not use forums and just move on with their lives after successful treatment. 

It may be worth considering conventional treatments with extra therapies such as reflexology and meditation as complimentary treatments.

Good luck to you whatever you decide.

CK x

CK1

KateG
Posted by

Just a few more positive promotions for conventional treatments; there are 48,400 new cases a year but 95% will survive for longer than ten years. In 1970 only 80% survived (still really good odds!). There was a documentary recently which suggested that within the next few years BC would become a 'chronic' disease - ie one that could be kept at bay for many years allowing women to live a natural life-span.

Another person who went down the alternative therapy treatment was Caron Keating. She espoused healthy diets and sunshine and sea in Australia but eventually succumbed to the disease.

Best wishes

KateG


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YvonneN
Posted by

Hi Chloecat45,

This is tough, and having breast cancer isn't just about the actual medical or conventional treatment to try and cure it, it's also about dealing with the emotional side too - the turmoil we all go through of shock, horror, denial, anger, fear - the list is endless, and the depths this diagnosis can take you to are really frightening.

I know and understand where you are coming from. It sound like you are feeling badgered by everyone around you - the medics and friends and family - to accept the conventional medical treatment. They all have only your best interests at heart, but they can't make that decision for you, and the more pressure you are under, the less room there is in your head to make the decision that is right for you, so that you are in control of your treatment.

Control is a very central issue in this whole cancer thing for me. I want to know everything, I want to call at least some of the shots, and I needed time to get my head around it all and make a decision on treatment that I could live with, because whatever anybody else says, I was the only one who would have to cope with any of the horrors of treatment first hand.

For a brief time I was so frightened of all the treatments that I was seriously considering refusing any of it. I am severely needle phobic, and that has made every step of my treatment incredibly traumatic, and i knew that it would be a severe ordeal.

I hope you come to the same decision I did, to go down the conventional route. There may be some success stories with the alternative treatments, but they are outweighed time and again but the conventional route - with a well over 90% success rate. It's a huge gamble to take the less followed routes, and I wasn't prepared in the end to take any unnecessary risks.

I also do a lot of other stuff, diet, visualising, resting, exercising, etc etc and have made quite significant life style changes I've researched which will up my success odds in beating this, and this also helps me feel I have some control in this thing.

One day, wouldn't it be nice if there was a single pill you could take to get rid of breast cancer, but until then, we haven't many choices, and if we want to live, unfortunately there is only one choice to make. It's a hard, tough difficult choice all the same, but unless you can commit to that choice because it's the one that you sincerely know is right for you, not because other people tell you to, you could feel very out of control. If you go down the conventional route, it's still your body, and you can opt out any time. But if you take too long to reach a decision, it may be too late to opt in.

Good luck with whatever you decide, either way isn't an easy ride, but please keep in touch and keep us posted - we're all in this together

Yvonne xxx

yvonnenewbold.blogspot.com

I've got cancer but cancer hasn't got me

Linda36
Posted by

Yvonne

 

When you are talking about alternative treatments, are you are including anti hormonal treatment such as anastroloze, as has been suggested to me by my consultant?

chloecat45
Posted by

Many thanks to everyone who has replied to my piece. 

Some have been severely negative but then I expected that (as its hard to understand someone who wants to deviate from the conventional route) and some have helped to stop me to re-consider the conventional route.  However, my head still cannot come to terms with the side effects of the conventional treatment though.  Why would anyone choose to go this path! when the alternatives on this Macmillan site show another way.  What also keeps pushing its way into my head is this route was chosen as it is cost effective to the NHS.  Is this the cheaper of the routes!?! leaving your immune system to deal with the after effects? - if it can!

Leaning, at the moment, to Photodynamics - looks 'chuddy-blood'.

.... still fighting this nasty little critter ....

ladybird51
Posted by

Hi Cloe

I am so sorry that you are very conflicted and very confused. Gosh we've all been there dozens of times! Everyone here is really trying to help you. But I have found some of your remarks very upsetting and undermining so I need to comment.

I am one of those woman who at this moment in time who has chosen the very tried and tested, conventional route and is trying to "come to terms" with the side effects plus the loss of a breast and my hair.

WHY go down this path? Because I want to live. I want the best chance I can get for myself and my family. I'll fight for that and go through the hardship of leaving my "immune system to deal with the after effects , if it can".

I turn to this site as I know I am not alone.There are some lovely ladies here who have given me some very helpful advice as I travel down this route. They all mean well and have every ones best interests at heart. 

When I sat with my breast care team and oncologist to discuss my treatment not once did I feel that they were giving me the cheaper, cost effective version. Thank goodness for the N.H.S. If I had to pay for all of my treatments I would be dead!  

Kay x

chloecat45
Posted by

Hi dealite

Received my copy of Dr Susan Love's Breast Book.  Many many thanks for recommending.  I've started it and can't put it down but need to get some sleep now.

.... still fighting this nasty little critter ....

chloecat45
Posted by

Hi Kay

Thanks for the comments.  As you are aware we all hope for another treatment that looks good and can do the 'business' without the side effects but we also know that there can come a time when we have to go down the conventional route.  Everything about my case screams a good outcome on this route and to my benefit there is a little bit of time for me to think things through and do the research.  Not too long though and I have given myself, and in agreement with my consultant, one month before I decide (only 2 weeks in).  Additionally I have today talked with the Breast Cancer Nurse at my hospital and she is going away to do some research so that she also is up to date on the new treatment/s I have mentioned to her.

The book dealite recommended, 'Dr Susan Love's Breast Book', is truly enhancing my knowledge and I have individually thanked her on this discussion.

I never meant to offend and probably put into words what each and everyone one of us has thought at one time or another.  I'm just not conventional and have to find out as much as I can before making a decision because in the end it is my decision and I have to live with it.  I have a large family and circle of friends who now understand this and are willing to accept my final decision.

I send you all the love I have and wish you a speedy recovery.

.... still fighting this nasty little critter ....