Member
Posts: 11
Registered: ‎17-10-2018

Re: Should I have Supraclavicular Fossa Radiotherapy?

Hi debiday

 

I've been reading your posts, and I wondered how you are doing?

I have recently been diagnosed with TNCC in my right breast and 1under arm lymph node. The tumour in my breast measures approx 3cm  x 1.5cm. I received my first dose of EC chemo on Thursday, and have developed a chest infection, so i am now on antibiotics. I've been told that I need to have another 3 cycles of this EC chemo every 3 weeks, before 4 cycles of three weekly Taxo chemo, at the same time as 4 cycles of weekly Carboplatin chemo. After that I am going to be offered a DNA test for the BRCC1 & 2 gene (I am 48 with no known family history of breast cancer), prior to a right mastectomy, with axillary clearance and chest wall and supraclavicular fossa radiotherapy. 

My world has been turned upside down in the last 4 weeks, but I am trying my hardest to remain strong and positive and to focus on taking each day at a time!

xx

 

 

 

Member
Posts: 112
Registered: ‎15-07-2013

Re: Should I have Supraclavicular Fossa Radiotherapy?

Hi debiday, sorry I missed your original post. I'm TN too (MX, ANC, FEC-T) finished rads to chest wall, axilla and SF in March. Just to let you know I was concerned about rads in general but decided to go ahead for the same reasons as you xx
Member
Posts: 4
Registered: ‎28-03-2014

Re: Should I have Supraclavicular Fossa Radiotherapy?

Lo, 

 

I drove my surgeons, oncologists etc. mad with all of my questions! I was armed each appointment with a long list of things that I wanted answers to and as I was constantly researching there was always something new that I wanted to talk about. You must be happy with the people that are treating you. I was not happy with the lack of information my oncologist was giving me so I asked for a second opinion. I was seen by another oncologist, that I immediately clicked with, who was more than happy to sit and listen to my worries and answer my questions. Some one very close to me, with cancer, told me at the start of my journey that this was my battle, and if i didn't fight for things, no one else would. So that's what I did and that's the advice I would give to you....don't let anyone get rude and agitated when you are discussing your life. Just ask for a second opinion. I think the problem is that there are so many people that are diagnosed with cancer, that just want the doctors to do what they have to do and don't want to know about side effects or what the future holds that women llke us, that need to be informed, are sometimes frowned upon.  Good luck with everything....and keep on asking those questions! x

Lo
Member
Posts: 3
Registered: ‎14-05-2014

Re: Should I have Supraclavicular Fossa Radiotherapy?

[ Edited ]

Hi Debiday

Thank you for your prompt response and for the tips on managing some of the side effects.  I had right side breast cancer. I met the RAD Onc 2 days ago and she confirmed the problem with stroke is a concern if the cancer was on the left side.  The RAD Onc was quiet agitated and rude when I asked questions.  I am mainly concerned about the side effects which may likely surface years down the line , which I find is an area of information that the docs are not in a position to provide .  I decided to opt out of RADs and plan to start Tamoxifen soon.

Good luck with the rest of your treatment and I hope all goes well for you. x

Member
Posts: 4
Registered: ‎28-03-2014

Re: Should I have Supraclavicular Fossa Radiotherapy?

Hi Lo,

 

Just to let you know that I finished RADs nearly 5 weeks ago now. I went ahead with the SF radiotherapy and i suppose my final decision was made because I have TNBC, which has a high rate of reoccurence and my lymph nodes were affected. I felt ultimately that I didnt want to leave any stone unturned if you know what I mean? The thought that this type of radiotherapy may increase my incidence of stroke in years to come obviously bothered me but at some point I had to stop worrying and stressing about things that "may" happen...I strongly belive that stress contributes to this horrible illness. I am a fit and healthy person and I will make sure that I continue to be. I would just like to mention that I also researched into Deep Inspiration Breath Hold, a technique that is used in some cancer centres for ladies who are having left side radiotherapy. My hopsital did not currently use it but I persisted and my oncologist made enquires and arranged for radiographers to use this technique on me. It basically involves holding your breath for 20-30 seconds whilst you are being "zapped" and this pushes your heart and some of the lung area out of the radiation field. The advantage of this is less of the heart is treated with radiation and therefore there is less risk of heart disease which is a side effect of left side radiotherapy. You haven't said which side you are having RADs? If you are having left side, definitely worth asking about this technique. If u don't ask u don't get! I used 100% pure, organic, coconut oil every day on my skin and brought an aloe vera plant that i broke stems from, kept in the fridge wrapped in cling film and squeezed on my skin when necessary. You would never guess I have had radiotherapy! I hope this has been helpful and good luck with your treatment x

Member
Posts: 3,842
Registered: ‎01-05-2012

Re: Should I have Supraclavicular Fossa Radiotherapy?

Hello Lo

 

Welcome to the forums. 

 

As well as the support you will receive on the forums we also have a free helpline where you can talk things through with a member of staff who are there to offer emotional support as well as practical information. The free phone number is 0808 800 6000 and the lines are open Monday to Friday 9.00 to 5.00 and Saturday 10.00 to 2.00.

 

Best wishes

June, moderator

 

Lo
Member
Posts: 3
Registered: ‎14-05-2014

Re: Should I have Supraclavicular Fossa Radiotherapy?

Hi debiday, I looked up the forum to check for discussions about RADs for SF and the chestwall and came across your message in April 2014.  I am going thru a similar experience and need to make a decision about whether I should do RADs. Please can I ask if you obtained any further information/research and if you are happy to share the decision?

 

Member
Posts: 7,967
Registered: ‎01-05-2012

Re: Should I have Supraclavicular Fossa Radiotherapy?

Hi debiday and welcome to the BCC forums

In addition to the support you will find here please feel free to call our helpliners for further practical and emotional support, they may also know of other users who have undergone this treatment

Lines are open weekdays 9-5 and Saturdays 10-2 on 0808 800 6000

Take care
Lucy BCC
Member
Posts: 4
Registered: ‎28-03-2014

Should I have Supraclavicular Fossa Radiotherapy?

Hi, I was diagnosed with Triple Negative BC in September 2013 followed by left mastectomy. Tumour size 1.9mm and 3 lymph nodes involved. Lymph node clearance showed further two nodes with micro metastasis. I have had six cycles of FEC-T and am just about to start radiotherapy. My surgeon told me that my cancer was aggressive and invasive and I needed chemo, followed by 6 weeks of radiotherapy to the neck area. When I met with my consultant radiographer recently, she told me my treatment plan involved 3 weeks of radiotherapy to my chest wall. I told her my surgeon's initial suggestion, to which the consultant told me that she was now thinking that maybe I should receive radiotherapy to the chest wall and the neck area (which is called supraclavicular fossa or SF). She explained that is radiotherapy to the SF is quite rare for breast cancer patients and that the side effect is an increased incidence of stroke in later years. Also if 4 or more nodes are positive that can be criteria for SF radiotherapy. She decided to suggest both chest wall and SF radiotherapy and basically told me to go home, research and make my decision. She said it was ultimately, my choice. I am confused and worried about the choice I have to make and it would be really helpful too hear from anyone else who has radiotherapy treatment to the SF. Thank you.