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Can you ask for a different plan of action?

9 REPLIES 9
WestieRuth
Member

Re: Can you ask for a different plan of action?

Hi

Im having chemo first im hers2 positive and er positve i didnt seem to have a choice just rushed to a chemo chair after diagnosis however the lump has shrunk from 3.7 cm to half an inch after two chemos its also in three nodes so hope it cleans it out before surgery. im really scared and can barely function convinced its been my wine consumption

WestieRuth
Member

Re: Can you ask for a different plan of action?

 hi

im having chemo and feel the same its bloody awful

 

mrsquincey
Member

Re: Can you ask for a different plan of action?

Ty Tara your post has really made me feel a little most positive x 

mrsquincey
Member

Re: Can you ask for a different plan of action?

Ty Jan. I think people looked at my first post. I have double negative for certain still waiting for my her2 results but they are pretty sure imma fall under triple negative and it is stage 3. 

I'm having mri on Monday and ct on Thursday then I need to have a bone scan that I haven't got a appointment for atm. It's all just crazy to me at the moment. Fingers crossed its not spread. Cos I really feel like I've been slapped with enough bad news now I need a little tinkle of light now x 

 

Jaybro
Member

Re: Can you ask for a different plan of action?

Hi mrsquincy

I’m sorry you’re in this position where nothing seems to make sense. The blow of a cancer diagnosis and being in the presence of a consultant so knowledgeable initially tends to silence us. We soon learn!

I’m a bit confused by this thread as I didn’t see a mention of triple negative breast cancer, only grade 3, which we know is advanced. Hopefully your scans will show there has been no spread beyond the tumour or, at most, beyond the lymph nodes. I guess much depends on your age and your personal body image. I had my mastectomy and axillary clearance first (two stage 3 tumours, one of each type, and 19 of 21 lymph nodes infected BUT no spread beyond) because it was pre-Covid days. However, many hospitals have a different approach and prefer to shrink the tumour with chemo before surgery. Like you, I just wanted my breast gone but there’s no escaping the fear of cancer cells so, with hindsight and better understanding, I believe it doesn’t make a great difference which comes first. The risk and certainly the fears are still there regardless. The cancer is removed with surgery but there is no guarantee that some of the little b*****r aren’t still there so you still need chemo and, initially, the horror of the possibility of them spreading is still there.

I’d say it’s essential for you to have a proper conversation about the reasons for chemo before surgery before you agree and sign your treatment plan. Your consultant may wrongly (?) believe you want as much breast preserved as possible. But bear in mind there has been real progress in breast cancer treatment and there is strong evidence that the established pattern (mastectomy, then chemo) is not always best. What I would advise is that you don’t try to inform yourself via Google. It really is the worst thing you can do as it can’t take emotions into account, is often out of date and isn't tailored to your specific circumstances.

Meanwhile, do all you can to focus on your emotional wellbeing, which is a huge part of the cancer experience. Keep yourself grounded, remember the success rates for breast cancer treatment are high and learn to trust your team to know what’s best for your specific circumstances. BUT always ask your questions. I wish you all the best for what lies ahead. It’s hard but it is all manageable and bearable - and nowhere near as frightening as you probably think it is right now. Best wishes, Jan x

ttyler
Community Champion

Re: Can you ask for a different plan of action?

Hi ladies,

just to put a different spin on things. I am Tara, was 36 when diagnosed with TNBC in March. Due to lock down I had surgery first. Finished my last chemo FEC-T on Thursday and will see my oncologist on Wednesday to sort radiotherapy.

 

 When I was diagnosed, my head was screaming just get this out of me. Get them off! I have 2 children 7 and 10 and knew I need to be here for them. To my horror my surgeon kept harping on about me having a therapeutic mammoplasty ( a lumpectomy with uplift) when all I wanted was a mastectomy. I kept thinking why is this person only worried about me having breasts and looking nice I would rather be alive with no breasts? I understand we are all different, each persons body is different, but I am so glad that I took my husband to my appointment that day because he really listened to what was being said, was my ears if you like and made some really good notes which we were able to discuss before I made my final surgery decision. It became clear that although I had a grade 3 TNBC that was aggressive the mammoplasty would be as effective as a mastectomy at this point. I was offered BRAC gene testing due to my family history and my age and the type of cancer I had. I accepted this and the results  thankfully came back negative. It was agreed that if I have the mammoplasty I can opt for mastectomy after chemo if the results of the gene test w ere positive or if I was too worried that the cancer might come back in future, which will be effecting my mental state. Therefore if I want a mastectomy now still after chemo it will be okay and is not ruled out.

 

 Like I have said I had to have surgery first but when I spoke to my consultant Regarding my concerns  about this I was told that chemo is given first as they hope to get rid of all of the cancer before surgery. In contrast, I am told that as they caught my cancer early it has all be removed with clear nodes and margins. The chemo is a mop up to make sure no cancer cells were left behind from surgery. I am not 💯 percent on the full details Of having chemo first, because I had it the opposite way around, but you are well within your rights to discuss your concerns With your consultant, specialist nurse or even by calling the number on the site to talk with a nurse specialist. It may be an idea to write down all of your concerns as bullet points and then you have them in front of you and can get all answers to give your mind a clearer picture.

 

 I know this is such a scary experience, but there are successful treatments for TNBC and although some parts of your treatment journey may be harder than others it is possible to get through and beat this. There are lots of people available to support you  On the site. We all hold onto one another and pull one another along.

 Hope this helps. If you need and more support please let me know.

 Lots of love 💕 Tara xx

Daisy4762
Member

Re: Can you ask for a different plan of action?

Just went back and saw your initial post Mrsquincey. I’m 38 with one toddler, so similar sort of situation, and only a couple of weeks ahead of you on this hellish “journey”. I also got told “apocrine features” tbh not sure what that means, let me know if you find out! 😆 It’s really rubbish, so unfair and frankly I’m *beep* off to have this diagnosis! But I am feeling more positive as time goes on. I have just been through all the scans etc and that is the hardest bit for sure. Be prepared for things having to be investigated that end up hopefully being nothing (I had an ovarian cyst, splenic cyst, swollen thymus and swollen chest nodes they were worried about at various stages all of which have turned out to be fine but it was utter hell waiting for each result). I do have lymph node involvement but my team don’t seem fazed by that so trying not to let it bother me either. I will be crossing my fingers for you for good news from the follow up tests and a swift start to treatment xx

Daisy4762
Member

Re: Can you ask for a different plan of action?

From what I understand (I ask lots of Qs too!) chemo upfront is the norm with triple negative (I am also triple neg). This is because we don’t have the hormonal treatments after surgery. By giving chemo before surgery, they can (in addition to perhaps doing a less invasive surgery) get a better feel for how we respond to the chemo, meaning they have more information for the post-surgical chemo as well. Post surgery it would be harder to tell if the chemo was working on any tiny areas left behind if that makes sense? With triple neg we often have a particularly good response to chemo (fingers crossed we do) so you are still attacking the cancer during these months and sometimes there is very little or even god willing nothing left at surgery. I have just started my neoadjuvant chemo and so far so good. I’m content it’s the right option for me. I do know how you feel though as only a few weeks back when I was diagnosed I shouted at the consultant to “chop them both off” there and then 😆 V best of luck with your treatment xx

Evie-S
Community Champion

Re: Can you ask for a different plan of action?

Hi mrsquincey - I think it’s a very good idea for you to speak to your team to discuss the plan, they will be able to explain the thinking behind it. It is your body and there is nothing at all unreasonable about asking questions. Some people just go along with the plan and don’t want to know - others (like me) asked loads of questions, it is very personal.

I’m not medical so won’t try to explain their reasoning, except to say that chemo can be given first for a number of reasons. I was told in my case that it didn’t make any difference whether I had chemo or surgery first, and I did have chemo first. Sometimes they try to shrink the lump so that the person can have a lumpectomy rather than a mastectomy.

So in short - yes, you really can speak to your team, at any time, to discuss your plan. All the best to you - please feel free to ask any further questions. Evie xx

mrsquincey
Member

Can you ask for a different plan of action?

So I'm still in limbo as I still have to have a mri ct and bone scan to check my cancer is no where else. I am praying its not. 

However the Dr said we will be attacking my grade 3 cancer aggressively with chemo first. 

 

It's playing on my mind terribly. I just want this cancer cut out, I can't imagine having to leave it inside me for 5 months whilst I go through chemo. 

 

I know they say they want to not deform your boob and keep it as normal as possible. But I really don't care about my boobs. Its the last thing on my mind. 

 

Can I say this? Is there any other reason to not do it this way?