I had a mastectomy last week and have another nerve wracking week to wait for results and treatment plan. I have felt healthy throughout and am very worried about the debilitating side effects if I need chemo or radiotherapy. What are the consequences of choosing not to have
these therapies?
It depends what kind of BC you had and about the health of your lymph nodes. I got a few pages printed with different possibilities and their outcome. It was about 7-8% longer survival rates for each additional treatment but who would decide not to have any treatment whatsoever?
Hi I had a mastectomy 7 wks ago. I suffer several illness as it is, I am self management of them. have been for 23 years. I suffer with most of the
side effects that chemo gives anyway. with little energy. COPD ,Asthma, neuropathy and other stuff.
I was shown a paper by my oncologist from the predict website 60 40 when I asked what did the 40 women die from. the answer was we don't know.
so on that basis I decided that having my whole breast removed and the 3 lymph nodes clear. I am taking my chances and not having chemo.nor any further treatment.
we don,t all want to do bib and braces and more support and TRUE info should be available. that's what I feel. I don't make this decision lightly either.
but I do need to have some sort of a life while I am alive. and what little energy I do have is precious, not to be gambled with on spurious figures. what do others think.
There are many side effects to the treatments. I for instance suffer from lymphoedema which is quite crippling. The medicine that I'm taking can make me suffer from osteoporosis which is another crippling side effect so I understand your point of view and wish you good luck with the choice you've made.
I am on my second set of sessions of chemo. To be honest, each persons experience is different, so really you should not judge how you may react from those reactions of others. For example, my first sessions of T and C chemo, although I had joint pains and numb fingers and toes with the hairloss, I mainly carried on as normal, whereas a colleague of mine found she could not move without being sick. On this current chemo C and A, I am ok. Sleepy but generally ok, nail beds hurt a little, for first few days slight nausea feeling but ok. Choosing chemo.... Well if chemo is the treatment, although aggressive, that will possibly cure your cancer, why would anyone refuse It? I don't think doctors would suggest it if it wasn't necessary. Unfortunately I have triple negative breast cancer and there is nothing available to treat it other than surgery, chemo and radiotherapy. I had a double mastectomy on the 5th Jan. Sadly, residual cancer cells were found. I had a bone and organ scan last week to see if it has spread. Waiting for the results is hell. Good luck with your treatment. x
Hope the result of your scan will bring a smile on your face. Also, hope your second chemotherapy treatment will ensure the cancer cells will never ever visit you again.
Keep peddling Lainey you're a strong lady. Wishing you the best for good results x
Thanks Mell, I'll let you know how it's gone when I Ger the results. I'm.feeling fairly positive today. This blooming picc line dressing is annoying though... Lol xx
Glad you mentioned the PICC line annoying you, mine annoys me too. My armpit is sore today in my good arm (not the one I had the Lymphs removed from)??????? Wishing you a speedy journey x
Hi Mell, just dropping you A line, baseline CT scan all clear, LFT elevated as liver is struggling to process the chemo, but no spread of cancer... Back on track to my recovery.... Happy days xxx
Hi, I am also triple neg and had 4 Lymphs affected out of 19. I had a full mastectomy and the surgeon said the got all the cancer out. I keep hearing about residual cells and nothing was mentioned to me which has started the worry as the surgeon wasn't forthcoming about the triple neg. I don't really know what triple neg means to my survival??? What is T and C?? I am having FEC-t chemo, day 8 today of round one - been tiring but not anywhere near as bad as I imagined. Wishing you well on your journey x
Hi Saralouise. I prefer the picc to the port but it does annoy me when the dressing gets all loose lol. I see you were asking about T and C, A and C etc. They are basically just different mixes of chemo. I cant rememeber their full names but if you google T and C chemo, it takes you to a breast care website and it explains it all very well really. I would not worry unduly about residual cells. If they had found any in your tissue that they removed during your mastectomy your consultant really should have told you. What happened to me was, I had been given a "technically all clear" from my surgical oncologist, but I had to still see my chemo oncologist. He explained to me that yes I was 'technically cancer free' in the sense that they had removed the three tumours I had in my left breast, as well as a full clear out of the left axilla, (basically all the lymph nodes from the left side). I had a double mastectomy as I felt that the odds of it returning with triple neg were too high to take the chance of not having my breast removed. When they tested the tissue in the lab after the operation, the tissue from my left breast presented with what are called 'residual cancer cells'. These are tiny cells smaller than two mm that cannot be detected by any scan. Because there was a significant amount of residual cells and the fact that I was lymph node positive, it is then taken as a given that there are probably residual cells swimming around in my body. So before they can 'take root' anywhere else and create further cancer, a stronger chemo is used, to go in something along the lines of a minesweeper, and to clear up these cells. I will also be having radiotherapy too. The tissue from my right breast was clear so that gave me some relief. I had a baseline CT scan of bones and organs on Wednesday of last week to see if any cancer has developed anywhere else. My CT scan last October was clear. I am hoping for the same this time, and that the cancer has not Metatised (gone anywhere else). The wait is not very nice as all sorts of senarios go through your head. It makes keeping positive a bit of a chore, but It has to be done. I wish you well in your recovery and hope you are given the all clear very soon. Chin up Saralouise, we are very strong women who have support from each other, because at the end of the day, nobody knows what it is like and no matter how well meaning some folk are, I don't half feel like giving them a damn good kick when they say, your fine, be positive, don't think like that etc.... I hope they never ever have to find out what it is like.
Take care hon, here if you need a shoulder xxx
Thank you for your reply, that helps explain some things. I wanted my right breast removed but surgeon refused and no waiting to go through genetic testing! I will pay private if it comes to it. Are you on Facebook as there is a good support group called Healing Boobies that is full of very good information . I wish you lots of luck and let me know how the results go - will be thinking of you xxxxx
Lainey this is so helpful thank you, you are a diamond ❤️. I know it was a while ago now and we are all still benefitting from your helpful and encouraging posts, so thank you so much for being here 😘😘😌.
Hi SaraLouise just dropping you A line, baseline CT scan all clear, LFT elevated as liver is struggling to process the chemo, but no spread of cancer... Back on track to my recovery.... Happy days xxx
Lainey that's fantastic, so pleased for you and your family. Onwards and upwards now! X
Absolutely... It certainly lightens the load 
feeling great today x
Fabulous news, thank you for letting me know. How are you doing???? Have you seen the Facebook closed group Healing Boobies?? It's a very good site with loads of great help and learning and has members from all over the world. Hope the sun has been shining where you are,Hampshire has been very spring like. What's next for you?? Sending you lots of love and best wishes. So pleased for you xxx
I was read was but i bet so happy all clean but you never belive it so right no unstand if not been few it
So sorry you're going through this Lainey the waiting must be torture!! I agree with you about treatment why would you refuse something that can save or prolong your life???? These treatments cost thousands of pounds they wouldn't give them if they didn't think they would give someone a better chance of survival. I think we should trust the specialists to give us that chance. Stay positive Lainey stay strong✊💞 wishing you well hun xx
you give cancer a chance if you dont have the therapies. chemo is tough. radio not so bad at all. im triple negative and that is aggressive if i allowed it to come back. i had surgeries chemo radio and 2 yrs on having another attempt at reconstruction..its a lifelong battle. i will say that i am now feeling quite healthy and will return to work after this op and recovery. ive had damage to my arms and this is due to toxicity of drugs .. i think a port in the chest is better than repeated attemts t9 go into your veins. it is a small procedure in theatre i think to have a port in but i think my arms would be stronger now. my veins are corded in left arm and its painful daily.
I agree elainemaria. Following breast cancer 4 years ago I had a single mastectomy then an elective mastectomy rather than reduction and reconstruction. I am well but I cannot have needles in my right arm, where they removed all my lymph nodes as I have lymphodema and I have on-going treatment for that and the veins in my left arm, where I had the iv chemo, have collapsed and apart from a few tiny veins, have never recovered. if I had to go through chemo again I would definitely have the line inserted in my chest. Chemo is not a walk in the park but I accept it saved my life.
I agree. I had a portocath inserted for chemo and it was so much easier. Especially when I saw people with heat blankets trying to raise a vein. On a positive note I did not find the treatment too bad. Did not go to work and just concentrated on myself and my family. If I felt tired I slept. I was lucky to have a wide circle of friends who fussed over me. Do whatever you can to make it easier. Meditation good as well for nausea x good luck x
I totally agree elainemaria. I'm like you. Triple negative. I had a port but it was not tremendously successful for me as I developed sepsis. However I niw have a picc line in and it is so much easier. I too have nerve damage to my left arm after both chemo and lymph nodes removed. (5/14 infected) veins are shot. However without the chemo we wouldn't be here. I hope and pray that things get easier for you. xx
The waiting for results is the worst part, once you know what kind of cancer it is and then they can discuss treatment options and side effects with you. There is a predictor tool the oncologist can use, which illustrates the benefit of each therapy used in terms of your prognosis. On mine it showed surgery was the most significant along with chemotherapy, radiotherapy and hormonal therapy at about 16%.
There are no guarantees with anything but these treatments can increase chances of survival significantly, despite the side effects, it is definitely worth going through. Everyone is different but there are lots of ways to manage and cope with side effects, these drugs save lives so well worth a few months of discomfort.
Good luck with your results. X
Hopefully the results will show that you do not need further treatment. If you do I think that you must go ahead with it. We all cope differently with chemo and radio but it is worth it in the end. Fortunately I didn't suffer too many side effects. Some of it is mind over matter. Think positive and try and carry on as normal as possible. Hopefully you have a good support network of family and friends -they kept me going throughout all my treatments. Good luck with your results xx
I had FEC-T chemo and had very few side effects, mainly tiredness. Your prognosis is vastly improved if you have the recommended treatment. Your consultant wouldn't suggest chemo if he didn't think it necessary. Good luck with whatever you decide
Hi as others have said everyone is different. And it really depends on a variety of factors to how important follow up treatment is. This is the question you need to ask your Oncologist. He/she should explain to you if further treatment is needed what percentage it can reduce it coming back. There is a tool called Predict that can be used to give these percentages they vary hugely between individuals. So for me for example chemotherapy gave me a 20% further increase of survival after 5 year, hormone suppressive tablets another 15% and so on. So everyone total percentage of survival is very different. A friend of mine decided against one of the therapies offered to her as it made only a 1% difference.
However be aware that these stats are based on outcomes from several years ago so as breast cancer treatment is improving all the time the survival rates will have gone up too -so best not to be too literal about them!!
Similarly chemotherapy if needed varies according to what type combination you have, the duration, the dose level and the frequency. Some people sail through it but will admit a big proportion of us do feel pretty ill and a smaller percentage (Iwas one of these) was really ill. However am glad I did it. There is lots of support and meds to counteract side effects, a 24hr phone line to ring if you are suffering etc... So a lot of the nasty effects can be well managed so long as you ask!! I'm a wimp but survived it!!
You are going through a really horrid time and having an op is no small matter. Ask lots of questions, Ring breastcancercare helpline they are really good at explaining stuff and if you have one ask your breast care nurse too.
Remember breast cancer is one of the most treatable cancers these days. I know it sounds an odd thing to say but frankly am glad it was breast cancer I got -much better that then the other cancers!!! 😊😊
I have had chemo, radiotherapy and still receiving herceptin jabs and on tamoxifen. The way I look at it, throw as much as u can at this horrible disease to kick it's ass. Good luck x
Hi I just replied to Rebec . I was HER2+ NO ER or PR and all three lymph nodes clear.
My decsion is not taken lightly and I cant find any help or support on making it either. which I consider bad.
I might have breast cancer...waiting on biopsy results 
Scared and Uninspired, Rare Aggressive Breast Cancer, What is Next?
Finished Breast Cancer Treatment
and the journey continues 
