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Feel stuned

14 REPLIES 14
Anniej
Community Champion

Re: Feel stuned

Well, Pinklily, you are going to be in stitches....cos when your hair comes back it will be just a curly mass. Aka the chemo frizz. I loved mine and was really disappointed when it went straight again. I wore scarves with straw hats last year, and felt very glam. I'm now able to ditch the scarves, but love the hats so much I keep wearing them, and adding to my collection. I bought my fair trade scarves from the Charlie bear shop in my hospital. The volunteers there made the scarves up for me in a number of styles. Enjoyed the freedom of a new look.  X

Chick1
Member

Re: Feel stuned

Hello Pinklily,

Thank you for your detaiked response regarding the hormone treatment. I think some people will find it useful.

I totally agree. We may arrive at different conclusions but what is important is not that we agree but that we make informed choices that are suitable for us as individuals and that we are very comfortable with. One size does not fit all, as the saying goes.

I hope the rest of your treatment goes well and wish you and your famiky all the very best.

Regards, Chick 🐥 X
pinklily
Member

Re: Feel stuned

Hi Anniej
Like you I've had my hair cut short and already had some nice scarfs sent from china, if I'm going to go bold, I'm going to do it with style. I've only been told that I will have chemo over 18 weeks and then three full weeks, including weekends of radiotherapy, what drugs I will have with the chemo, I've no idea, my surgeon would only say discuss that with the oncologist and I don't need to see you for a year.
Like you I have found this site a god send and with people like you, the support has been tremendous. My problem is, I have to have all the Ts crossed and all the i dotted, I like to have things done in order and all the information, so I can process and make sense of things. When I'm given, as you said the runaround, I feel vulnerable.
My hairdresser said, when my hair grows back it could be curly, I laughed, it never has been, but my mother always wanted me to have curly hair, so it will be funny if it does. lol

pinklily
Member

Re: Feel stuned

Hello Chick1

 

The reason I, or rather we have decided hormone treatment is not a good idea, is because I have arthritis and fibromyalgia, they are kept under control and I am practically pain free, by taking Naproxin. I'm 62 and apart from cancer have a very healthy and active life style i.e, walking for miles, dancing modern jive, swimming and after a bone density test, I was told my result was above average for someone of my age.

 

Yesterday I walked 10 miles up and down hills and on the flat. When I got home, I was not a bit tired, that's how I want to remain.

 

I have spent hour upon hour, researching the affects, statistics and the research into hormone treatment, in the UK, Canada, Australia, New Zealand and America and have been stunned in what I've read. I don't want to say what my evidence for my conclusion is, because I would not want anyone else to take my findings as a reason why they should not have hormone treatment, I can only come to the conclusion what is right for me.

 

I know that some of the side effects will cause me problems, both physicaly and mentally. It was not an instant decision to make, I needed to discuss it with my hubby, my cousin and even my close friends, just to make sure I was not subconsciously being negative. But I know for what ever time I have left in this world, I want quality of life, even if that means less quantity. 

 

I don't fear death, I don't fear cancer, but I want to do all the things I'm doing now, without side affects preventing me from doing them, for as many years as I can with my hubby, who is 10 years older than me and very fit and healthy. I would not expect anyone else to make this decision, although I know a lot of women who have and I've spoken to them to get an idea of how their decision has affected their lifes.

 

At the end off the day, we each make decisions on what we are told, or what we believe and that's why I decided to have chemo if required and radiotherapy, but that's where it stops.

 

If the cancer comes back again at some stage, I will deal with it then.

 

Hope that answers your question, difficult for some people to understand I know, but that's what makes us individuals, we all take different paths in life.

 

I'm so pleased you were able to sort things out, it's just so frustrating that as well as dealing with cancer, we have to do our own admin and chase things up, I know the stress is not helpful when trying to recover.

 

This is my 13th major operation and I have to say, non of the other ops I've had have caused me or my hubby anywhere near the stress with the admin staff as this one has.xx

pinklily
Member

Re: Feel stuned

Hi Appletree
Thanks again for the info. I had three lymph nodes taken, all clear. The surgeon has no communication skills, although, after I complained to a number of people, he seemed to be more human on Friday. I've done a lot of research since being diagnosed, including research results and stats, so I'm fairly knowledgeable about cancer and treatment, just struggling with the fact that as a human with the condition, I'm being treated like an insignificant human being.
I appreciate the info you are giving, it's people like yourself that make me feel I'm not alone and making common sense of the whole situation.
Anniej
Community Champion

Re: Feel stuned

Hi Pinklily, you do seem to have been given the runaround . What a shame when you really need support. From my experience your wounds need to heal really well before chemo as your immune system will be well and truly compromised. Do you know what regime has been suggested? Some seem to be better tolerated than others, although as we are all unique we do respond very differently to the same treatments. I have always come here for advice and support, and found the downloadable material excellent. Google does not have Doctor in front of his name, so I would stay well away from that. The NHS works within time limits, and although it seems long to us from this side, they always seem, in my experience, to proceed in quite a timely fashion. My hair was quite short, so when it fell out in lumps and felt quite tingly and painful I just had it all shaved off. Made me feel much tidier! Hoping everything goes your way. Best wishes for the rest of your treatment. X

Chick1
Member

Re: Feel stuned

Hello again Pinklily, 

 

I know I gave a thorough response to your other post on the Chemo thread, but as others have said,  time to chemo after surgery can vary.  There has been research undertaken to indicate the sooner,  the better.  I don't think up to 8 weeks is unusual.  I take it that they couldn't start it now even if available as your wound still needs to fully heal.  So that is what is important, that you do all you can to fully assist that. I like the comment that you made on the other thread about who ever sewed you up not being as good a seamstress as yourself!

 

Even with all the stress,  it's good to see you and your supportive hubby maintaining a sense of dark humour so to speak.  IE That the cancer may not kill you but the treatment may give you another stroke.  Oh darling I bleeding hope not!  And yes,  you are so right,  "cancer does not have a holiday or time off... "- good for you to stand your ground and let them know the impact.  You could always feed back formally if it helps you get it out of your system and may prevent it happening to others. 

 

We should be able to trust in Services and make sure they get our appointments and information right.  Praise them where Service is good and also let them know where it falls short to help others hopefully in the future. 

 

I have an appointment due for Bishphosphonate infusion next week. On checking with the relevant ward, and institution as nothing received in the post, no appointment planned!!  Fortunately,  I have made arrangements today directly through another Oncologist I know at another institution where I have previously had treatment,  so there will not be any delay.  However,  I will feedback my experience in a constructive manner.   Not everyone is necessarily able to be such "an active participant in their treatment Etc" and such things can be forgotten about/overlooked to our disadvantage as occurred to yourself and nearly to me!! 

 

On another matter,  I see you have declined  hormone treatment.  Just out of interest,  what guided you in this direction? Not that you have to answer of course!  It is just some women struggle with this decision and yet you seem quite resolute. 

 

All the best to you again Pinklily, 

 

Chick 🐣 X

 

 

Appletree
Member

Re: Feel stuned

Pinklily, my heart goes out to you. It's not surprising you need to rant.

 

As chemo affects your immune system making you very vulnerable to infections, I would have thought the Oncologist will have to wait for your wound to recover before starting on chemo.

 

It doesn't sound as though your pathology results were too alarming, although the surgeon could clearly do with training in communicating with patients. Grade 2 is medium, ER +3 is fairly low (max is 😎 and a tumour <3cm is not especially large. From your post, I'm presuming it came out with a clear margin.

 

My own tumour was invasive ductal Grade 3 (fast growing), ER + 8/8 (very strongly E R+ve) and 2.5 cm. One sentinel node had metastaces, so they removed all 26 nodes from the axilla (they were all clear). Even so, the Medical Oncologist agreed I was in the borderline group of women where chemo was concerned and I was given the opportunity to take part in a randomised trial which is testing a test to distinguish between patients in that group needing chemo, and those being overtreated. They wouldn't recommend a patient as a candidate for such a trial unless they were confident chemo wasn't essential. That was one of the factors prompting my decision to decline chemo. (I am on endocrine therapy.)

 

What I'm leading up to is that, one way or another, it doesn't sound as though starting your chemo is of absolute urgency. Assuming your tumour and any affected lymph nodes have been removed, chemo is being given for preventative reasons, rather than curative. Your weeping wound needs to be cleared up completely first. Have you had all or some lymph nodes removed from your axilla? If that is so, your immune system will have been compromised to some extent, anyway, so they'll have to be careful before lowering it further. 

 

Although it's unlikely to be any consolation, my axillary wound weeped for weeks and I eventually had to return for surgery for it to be excised. It was pumped full of antibiotics, which I had to take in pill form for a further week.

 

All the best. I do understand your frustration.

 

pinklily
Member

Re: Feel stuned

Had you started hormone treatment before chemo Sue?
pinklily
Member

Re: Feel stuned

If I'm not having hormone treatment, which I've declined, do you think they will start chemo earlier. I'm retired, no problems there, had my hair cut short four weeks ago and booked in for the 21st to have it cut shorter. Thanks Sue
pinklily
Member

Re: Feel stuned

Thanks for your reply Appletree.

 

I already knew the results from my biosy, invasive, grade 2, ER+3 and I had been told it was 1.5cm.

I told the surgeon on Friday, I am not going to have hormone treatment for a number of reasons, he respects that and has said I will defenatly be having chemo in that case, as well as radiotherapy to follow. When he said it was nearly 3cm rather than 1.5, it just knocked me a bit, before that he had been very dismissive about giving me any information and I had complained to the bcn about his attitude.

 

I've had to chase up the appointment for my surgery because the admin staff had not done their job properly, but everyone I spoke to blamed everyone else. I was told on Friday I would be recieving a letter in the post this week with regard to my oncology appointment, when I checked yesterday to see what date it would be, I was told, I'm not even on the system, spoke to the bcn again and she said, it was probably because both the oncology ladies had gone on holiday at the same time, so I told her, cancer does not have a holiday or time off and what stupid manager would allow both people to go on holiday without getting cover for the position?

 

The surgeon is not very happy I've been doing research or talking to other people on the forums, he told me before surgery on the 14th Aug, I'd prefer patients not to go on the internet for anything, he didn't know I was an IT lecturer before I retired, that comment was the only thing that's made me smile since I was diagnosed.

 

The bcn said I was in control, that's a load of dribble, I'm far from in control.

 

Now to add insult to injury, my wound under my arm is weepy and my doctor has had to put me on antibiotics and told me to keep the wound covered as the stitch on both ends have come through and catcing on my clothing, which needless to say has made the wound, red, angry and sore.

 

If one more person tells me, try not to get stressed, I will scream.

 

My husband said, the cancer may not kill you, but the stress will give you another stroke and it's all mostly caused by the lack of communication between the staff at Canterbuy and Margate and people not even bothering to reply to my phone messages when asked.

 

Sorry, had a bit of a rant, but at the moment I'm wondering, why on earth am I putting myself all through this and I have not even started chemo yet, or got an appointment for an oncologist.

Sue C
Community Champion

Re: Feel stuned

Hi pinklilly
Chemo needs to be started within 12 weeks after surgery, so there is plenty of time.
Use this time to rest and recover from surgery. Drink plenty of water and carry out the daily exercises.
In terms of planning, have a think about eg, work, childcare etc. Prepare for days when you won't feel up to much. Maybe think about getting your hair cut short if not already.
These are all very practical things of course. But just give yourself time to heal.
Best wishes
Sue xx
Appletree
Member

Re: Feel stuned

Dear Pinklily

 

I echo what Paulus has said. It sounds as though you've received really poor treatment and need clarification.

 

In your situation, I think I'd phone the BCN and make an appointment to see her face-to-face, before you see the Oncologist. Then be frank with her about how you feel, and ask her to talk you through the details.

 

From your post, it seems that you've already had surgery. Didn't the Surgeon tell you the pathology results, which should have been through c. 3 weeks after surgery? He/she should be able to tell you the size of the tumour removed, the grade, whether ER +ve or -ve, and whether HER2 +ve or -ve. I would ask your BCN about this and request a copy of the report your breast surgeon will have sent/will send your GP.

 

As far as I know, it's not unusual to wait for 8 weeks after surgery for adjuvant treatments to start. The wounds need to heel well before you have post-op treatments. If you're having chemo, that usually comes first, followed by radiotherapy if you're having that. Hormone therapy, if that is on the menu, can go alongside radiotherapy. Your BCN should be able to tell you the programme.

 

In my case, my pathology results took 3 weeks to come through. Then there was a Multidisciplinary Team meeting about the results (Surgeon, Oncologist, Radiologist, BCN) to discuss treatment recommendations, then I had an appointment with the Surgeon to discuss the results, followed a week later by an appointment with the Medical Oncologist to discuss the treatments and give my consent. As I declined chemo, I was then referred on to the Clinical Oncologist (Radiologist) and was immediately started on hormone therapy as I was strongly ER+ve.

 

Had I accepted chemo, that would have come first before rads and hormone therapy, but there would have been a wait. I was still having problems with my axilla wound which kept leaking serum. This meant extra surgery 5 1/2 weeks after the original WLE and axillary node clearance. I had a further 4 weeks to wait before radiotherapy started, to allow for complete recovery of the wound site. So, rads didn't start until 9 1/2 weeks after the main surgery. Had I had chemo, that would have started about then, and rad and hormone therapy would have waited until after chemo.

 

Every patient is unique, so you need to have your own programme outlined to you. Be firm with them and don't be afraid to tell them if you feel swamped by the situation.

 

You could also ask the BCN which websites she recommends for reliable information. I was directed to Breast Cancer Care, Cancer Research UK and Macmillans, all of which are very comprehensive and trustworthy. There is a great deal of misleading rubbish on the www.

 

I do hope things improve for you soon.

 

Paulus
Member

Re: Feel stuned

oh pinklily,

 

You sound as if you really need someone to 'pull it all together ' for you, so that you can make sense of what is happening.  Telling you ' the cancer is bigger than he thought ' is not the way you need to hear things.

Maybe one of the other ladies will come on and be able to point you in the right direction of who can help you with this  -  this is not a time for you to have 'vague comments' or lack of order from the professionals you need to rely on.

 

I reallly sympathise.  My instinct says your BCN, or maybe the specialisist oncology specialist nurses?  

 

Sending you a hug, but you need more than that - good that you have a fab hubby xx

pinklily
Member

Feel stuned

On Friday my surgeon told me the cancer was bigger than he thought, I don't know why, but I felt like I had been hit round the back of the head with a cricket bat. I've been very pragmatic up till then, but I just felt stunned. He also said I would be having chemo before radiotherapy, due to the size. I was not worried about having chemo or radiotherapy, but I now feel like I'm losing control of what's happening, it's not a good feeling for me.

 

I've also had to chase up to get an appointement with an oncologist as I was told, for some unkown reason I had not been put on the system again. My CN told me today I would see the oncologist now approx 17th September and should start chemo at the end of September, beginning of October,with luck, although it's still not certain, that's eight weeks after surgery, seems an awful long time and I don't know what comes before chemo, but I'm reading up on it.

 

My darling husband is holding my hand all through this, but at the moment, I feel like I'm falling from a mighty height and it's frightening me.