Chemo or not?

[Gillyflower]

So glad to hear you were able to make a decision and that your Oncologist is also supporting you!  How did your first chemo go? 

Please keep me posted on how you are doing - I'm still considering COC protocol at some point myself so it would be interesting to hear how you get on with the combined regime.

Good luck with your treatment, hope all goes well xxx

[Susiewong]

Thank you so much for your reply. 

I'm starting chemo on 19th.2 cycles 3 weeks apart, then a scan. 

In the end, my onco is supportive of me doing the COC protocol, diet change and increase my exercising regime. 

I'm apprehensive about chemo but coc protocol increases efficacy of chemo and they recommend a combined approach. 

Xx

[Gillyflower]

Hi again Susie,

I just had another thought which I wanted to share, as I really feel for you as your dilemma is a difficult one.  I faced all of these questions too when I went through my primary and secondary diagnoses.

Firstly, I think its important to trust your gut instinct.  My nurses recently had a conversation with me about this.  Its your body and you know it best and if you think its telling you something, listen to it.  Your clinical team can only advise you what they think is best for you but that doesn't necessasrily mean they are always 100% right and you most certainly don't have to do everything they suggest.  So if you have a gut instinct, tell your Oncologist about this and make it really clear to them about how you feel.  Encourage your Oncologist to discuss your fears of chemo with you to help you find a compromise, or some way of meeting in the middle in regards to a treatment plan that they can offer you.

Secondly, yes there is some research out there which shows that some cancers can become more aggressive or change after chemotherapy or any type of cancer treatment.  From what I've read, this is a fairly rare response (this was also my concern and I pretty much cried before every session because I was distraught at the fact I had to have it).  This is something you can discuss with your Oncologist and ask questions about to help you make a decision.

Thirdly, you can always ask for time to think about things and weigh up your decision.  I've read other people's stories who faced this dilemma and wanted time to think about their options prior to starting chemo.  They agreed with their Oncologist they would have some time away to think and see how things go without treatment.  If this was a substantial period of time, eg. three or more months, the Oncologist would request a CT scan at the next appointment to see what the cancer was doing. 

There were cases where individuals had no/minimal cancer progression, whereas some others did and then opted for treatment at that point.  The main thing I took from these stories is that people seemed more confident that chemo was then the right option for them, or there was more information available from scans which meant that other treatment options could be explored.

Nicky is right in that just because you have chemo on one occasion, it doesn't automatically mean you have to have it forever.  A good Oncologist wants you to be as well as you can be whilst the disease is being managed and won't want to keep you on chemo if they can help it.  There are guidelines (called NICE guidelines) that inform Oncology practice to suggest what treatments should be offered and at what stage to breast cancer patients.  Its worth a read (its an easy to read flowchart) if you think something like that might help you xxx

[Susiewong]

Hi Nicky, 

II'm reading though that chemo can make cancer more aggressive and eventually options chemo wise run out😯

My BC is er/pr+ her 2-

My lung cancer is likely TTF1 adenocarcinoma. Both non aggressive (at mo) both low level.

Chemo can cause me lots of other issues some may be permanent and at mo I'm well with no symptoms. I won't be if I start chemo.. 

This is so difficult... But I really appreciate your advice x

[nicky08]

Hi Susie

Depending on what your SBC is identified as (triple negative/triple positive/hormone positive) there are other ways of treating it, not just chemo. I know it’s difficult, from what you have written previously, to determine what your own type of SBC is but over the 12 years or so of having SBC I haven’t been on chemo all the time, so it doesn’t mean that if you go down the chemo route you will stay on it with no other options. This is the case for triple negative (as there are no receptors to target) but not the case with other types. Just in case that’s your main concern although I agree with you that, at the moment, you may not want to start on chemo at this point. Decisions, decisions!
Nicky x

[Susiewong]

Hi love mama, 

Thank you so much for your response. It's such a hard decision to make but my gut instinct is telling me that chemo now while all is stable with no progression is too toxic and brutal. My thinking is to try COC protocol along with more supplements, dietary change etc to try and hit the cancer and weaken it.. Then go in with a lower dose of chemo. Do COC for 2 months, get scanned and see... 

Once you are on the chemo train you can't get off🤷‍♀️. 

Hope you are OK?

X

[lovemama]

Hi Susie,

Just to share my experience.

I am type II diabetic and have been on metformin (500mg twice daily) since 1999. My mammogram in Oct 2010 came back clear. In Dec the same year I found a lump (about marble size) in my breast. The walk-in clinic physician (probably based on the mammogram result)told me it was cyst and could be absorbed automatically by the body. In March 2011 I felt the lump had grown to about 1.5 inches. My GP examined both my breasts and my armpits. He sent me for the ultrasound/biopsy.  In about 1.5 week the biopsy result came back as positive. I then had my mastectomy in 3 weeks time. stage 3 with 5.5 cm tumor, 8 out of 27 lymph nodes were affected. In a post surgery follow up appointment with my GP, he said he was very surprised so many nodes  were affected and he didn't feel any when the first time he examined my armpit. I also felt the lymph nodes had grown one by one during the waiting time. That means, the cancer had spread to 8 lymph nodes in 4.5 weeks time.  Personally, I really can not agree metformin has any ability to kill the cancer cells or maybe, even to slow down the aggressiveness. At least I can not see.

My mom was type II diabetic and had high cholesterol. She was on metformin and Lipitor when she was diagnosed stage 1 ER+ bc in 2004 and sbc (met to colon and blood vessel) in 2012. She only had 1 round of chemo and chose not to have any more chemo due to her age (70 yo) and also the side effect (not able to recognize her family and friends for 1 month).

My dad had been on Lipitor for 25+ years when he was diagnosed secondary colon cancer spread to liver (initial 2 cm tumor) with unknown primary (primary not found). He did not have any treatment but only lipitor. When he passed away after 3 months, his liver tumor grown to 9cm.

I understand Taxol treat both breast cancer and lung cancer. I had 8 rounds of THP (and ??maybe with metformin??)  which cleared all the lesions in heart(?)/lung/sternum/abdominal lining.

ps. I am not any medical. I just feel COC protocol may work being a complementary therapy but can not look it as the main treatment. 

[Susiewong]

Thank you Nicky....

Nothing is ever straightforward. 

I'll carry on researching and asking questions. There will be a way forward. 

Many thanks for responding and sensible advice. 

Xx

[Susiewong]

Thank you gillyflower

All you say makes total sense. Lots of questions still to ask. 

Really appreciate your advice and input. 

Xx

[Gillyflower]

Hi Susie,

It sounds like you have perplexed the medics and I can understand why you want to try the COC protocol instead of chemo.  I would also be asking the same questions as you if the cancer is stable and not aggressive.  Either your Oncologist hasn't given you the full picture and reasoning as to whey they want to give chemo or they really are over-treating you.  It might be worth you speaking to your Oncologist again and getting him to put everything in a letter to you about the rationale for why the want to give you chemo at this point as perhaps there are future concerns that they are thinking of but haven't properly communicated to you.

I don't have any experience of the COC protocol myself however like many others, I have seriously looked into it.  I hadn't made my mind up about it yet as I couldn't find anyone online that has actually been doing it for SBC and had successful results with it.  I also noted from their website there is a cost and they also won't accept new patients without approval from their current Oncologist.

Have you thought about getting a second opinon from a different Oncologist (at a different hospital)?  I always think in cases where you have some confusion or doubt about what is being suggested and why, its handy to get a second opinion.

Your Oncologist wouldn't be allowed to stop you from trying the COC protocol but you might hit a barrier if you decided to go ahead and the COC clinic want approval from your Oncologist.  I have read of cases where some patients have had to get a different Oncologist who was aware of the COC protocol and willing to give their consent.

The main thing to be aware of with COC or any of these alternative medicine routes is to do thorough research beforehand (and not go off anecdotes on the internet!) as unfortunately, there really isn't enough proper clinical evidence to prove that alternative treatments work at all, or work well for everyone.  Hence why maybe getting a second opinion may help as not every Oncologist holds the same view and some might share more information than others. 

Best wishes to you and good luck, whatever you decide! xx

[nicky08]

Hi Susie

Thanks, that does help with understanding what might be best for you. I am aware of the COC protocol but have no experience of it so I can’t comment on whether you go with it or not. Someone else who is on it may have more detailed input.  I guess if your SBCis being closely monitored, but not aggressively treated that this point, it might be worth exploring. In the case of triple negative SBC the ‘watch and see’ principle is sometimes used particularly when it is not an aggressive strain of BC.
Good Luck

Nicky x

[Susiewong]

Hi Nicky, 

I have secondary BC and secondary lung cancer😩

However, I've been told it's low level. Neither cancer aggressive. Stable on scans since March. No progression. No change. 

Think they were perplexed by what's going on with me as I've also had an autoimmune disease since I was 23. On steroids off and on since then but it's been in remission for last 2 years. I feel well. Am asymptomatic. Best I've felt for years....

Chemo at this stage seems a sledgehammer to crack a nut. Oncologist even told me it's legal poisoning. I just feel the alternative approach with maybe some low level chemo is a better way forward.. But it's not an easy decision to make. 

Thanks for your input

X

[Susiewong]

Hi Summer60, 

Thanks for replying 😊. We discussed with oncologist Jane Mclelland protocol and he told me they would not allow both treatments. I had to do 1 first then the other and they are recommending chemo first. I'm not happy to try chemo first. I want to try the COC protocol. 

Chemo treatment is 6 rounds every 3 weeks with carboplatin and paxlitaxel. I have a very complex medical history. My current diagnosis is secondary lung cancer... They can't locate the primary.. Said my body may have got rid of it. I have also secondary BC. They've told me it's highly unusual. I don't have tumors but microscopic evidence of these cancers in my nodes. My mediadtinal nodes show evidence of the lung cancer, my other node in my pleural lining, which is very small shows evidence of secondary BC, but it's not showing much hormone which my original BC was er/pr positive her2neg.

They have said my cancer is low level and stable since March.. 

I just feel they are overreacting by hitting this hard. I feel they will be poking the tiger.. It's all very confusing. X

[Summer60]

Hi Susie

As far as I'm aware, Jane McLelland's protocol was created to be used alongside cancer treatment and not instead of it.

Have you spoken to your Oncologist about different treatment options? Some treatments are kinder than others.

Best of luck to you whatever you decide to do.

[nicky08]

Hi Susie

Just checking whether you have secondary BC or not. Unfortunately the title heading of this section is misleading as it doesn’t state it’s in the secondary part of the forum, it just says ‘Treatments and Medical issues’ so from a quick search of appropriate places to add a new post this would seem the right one. 
The answers you get will be quite different depending on the stage of your BC, whether it’s primary or secondary. We can help either way with your question once we know more.

Nicky x

[Pawsome]

I guess at the end of the day this is a personal decision for you to make. I would urge you to have a good talk with your oncologist / breast care nurse before making any decisions. What I would also say is that whilst stage 4 might not be curable many ladies live with it successfully for many years - we’re talking up to 15 years. It can be managed successfully for a long period of time and depending on your type of cancer most of the new treatments are very easy to manage. I haven’t changed my life at all since my diagnosis and still work full time etc. It might also be having a look at a recent BBC documentary before making any decisions. It called ‘False hope? Alternative cancer cures’. It is available on the iPlayer and watching it might also help inform your decisions about treatment. 

[Susiewong]

Big decisions to make... I am considering not having chemo as treatment and thinking of choosing the protocols recommended in the book How to Starve Cancer by Jane Mclelland. 

Is this a mistake? Chemo is so brutal and it won't cure me...

Grateful for any thoughts. 

Good wishes to everyone