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Oncologist appointment

Hello Ladies,

I saw my oncologist this afternoon (She was running an hour late! My GP was 40 minutes late when I saw her last Tuesday and when I had my zometa infusion on Friday I had to wait about 45 minutes!) to get my latest CT scan results. This is the fourth consecutive post-treatment scan where I have been stable, so that is good news.

I asked lots of questions, and wanted to know if the tumours had shrunk. She said the metastases in my bones are so tiny that it is hard to measure them, and then I asked about the breast mass. She measured it and it has shrunk. I also decided to bite the bullet and ask about ibrance and why I had not been put on it when I first started treatment. When I told her I had read that it doubles progression free survival when combined with letrozole she agreed, but then said it wasn't offered to me to begin with as it's not generally given to pre-menopausal women when they start treatment. Oh, and money was an issue! I knew that had to have something to do with it. If I had known that sooner I could have gone private and got it. I was a bit irritated when I heard that. She said she hopes I will be on letrozole for many years to come, but the second line of treatment will probably be faslodex.

My oncologist had in her hand a copy of the letter sent to her by the COC doctors in London. While she did not tell me to stop the protocol, she was not in favour of it. She said there is "not enough evidence", but that "it could work" and would not cause any harm. I told her I am willing to give it a go and see how it goes.

Anyway, that's about it. I feel happy that I am continuing to do so well, but I just feel so emotionally drained right now. I have had five appointments so far this month, with one more this Wednesday when I travel down to London to meet Dr Callebout.

Sophie

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Sophie, how great that you are stable and your tumor is shrinking, and just on Letrozole! I was given the Letrozole + Ibrance option at the beginning but was so weak from the cancer that I didn't think I could handle more side effects. Letrozole alone did a great job for a year and a half while I got a lot stronger. When my numbers and mets went up again earlier this year I switched to Faslodex + Ibrance and it's working well too. For me, postponing Ibrance was the right choice, and now I'm glad to have it "fresh" to work with Faslodex. I'm curious to hear if other women had good results with Letrozole + Ibrance, then Faslodex + Ibrance?

Wishing you continued good results!

By the way, in the U.S. they are about to require drug makers to list the price of their drugs on TV commercials. Ibrance advertises constantly here. I wonder if they will be honest and post their $15,000/month price?

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Hi,

Thank you for your well wishes! I am pleased with my progress (as in, no progression!)

Goodness me! How can anyone afford that kind of price tag in America? That is so much money. I hope your insurance covers everything that you need.

Sophie

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I doubt it. Or they will use a figure not true. They need to also say Medicare does not approve the drug. So ridiculous.

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I'm sorry to hear that, Frances.

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Boy if these clinicians had mbc they’d make sure to get everything that could help them. Glad you’re two steps ahead of them

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Thank you! I agree with you. I will continue to add to my regimen and see private doctors as well as NHS doctors to help with this disease. I believe in taking an integrative approach, so everyone can help in some way, but no one doctor has all the answers.

Sophie

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Hi Sophie. I've been living on Faslodex, Arimidex and Xgeva for 5.5 years now with no progression. The side effects are pretty minor. So the way I see it, I'm going to ride this horse until things change and then, Ibrance can be my next step. I hope that your Letrazole can work for a very long time!

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Thank you! That's so kind of you to say so. It's encouraging to hear that you have been on your current medication for so long. I hope you are also able to continue on it for many more years to come, or until the cure comes.

Sophie ❤

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We all need to hang around for a cure. Or at least, better meds to let us "keep on, keeping on!"

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Yes, you're right! Let's keep going. I want to be sacked by my oncologist, not for doing anything wrong, but because I no longer have cancer! 😂😂

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That's an awesome goal!

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Wouldn't it be great though?! Just think, next time you enter the consulting room to be asked why you are there and then told you will never have to return.

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That's the stuff dreams are made of!!!

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Definitely! We need to dream and hope. I'm not a quitter.

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Glad you had positive results again today Sophie and I wish you well with the COC protocol, but take care not to overdo things as you need all your strength ... take some time out for you ! x

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Thank you so much! I am hoping for the best from the COC protocol too. So far, so good! I have had my dad and brother staying for over a week, so it's been a really busy time for me and my husband.

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Hey well done on being stable again..great news

I know that Ibrance is only a treatment for post menopausal ladies..I guess the trials were done on that age group as we are more likely to have mbc than you younger ladies

I’ll be going to London soon for my COC appointment..haven’t informed my GP or oncologist..maybe there isn’t enough evidence for the off label drugs but I haven’t got years to wait and see so I’m like you Sophie and want to give them a go

I hope you get a little rest before your consultation on Wednesday..I was offered an appointment there for June 4th but it clashes with an appointment with the radiologist here do have to rearrange but shouldn’t be long

Good luck

All the best

Barb xx

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Morning Barb,

Thanks for the support. That means a lot. Even though I was kept waiting for ages, my oncologist seemed in a rush. She gets to that point where you can tell she is finished once she has delivered her news and answered some questions. My husband said "Come on, Sophie. It's time to go".

I wish you well with the COC clinic. Let me know how things go for you in London.

A friend has very kindly offered to drive me to London tomorrow to see Dr Callebout, which is so thoughtful of her. It's just what I need!

Enjoy your day,

Sophie ❤

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Hi Sophie

I’ll think of you tomorrow in London..my appointment has been rearranged for June 11th with a doctor Vamadevan who I hope is good...I’m just getting the train from Nottingham..the fast ones only take a few hours...I’m going on my own as there’s nobody to go with me...my husband hasn’t offered so I’m not bothered...I’m quite independent about things like that

Barb xx

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Barb,

Good luck June 11th.

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Hi

So pleased you have no progression that’s great news. I always have to wait when I go for my monthly injection so now we have agreed that I ring them before going up to see how behind they are. Saves me sitting there for 3 hours. I am definitely getting the feeling that money is an issue with ibrance as the hospital pharmacy told me I am now the only one on it in this area. It’s making me nervous as I think they are waiting for any excuse to take me off. I am going to se the COC too just gathering the information they asked for, and I’m hoping my oncologist will be onboard.

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Hi Scandia,

Thank you! That's a good idea about calling ahead of time to check if patients are being seen on time or not. I should have done that yesterday! I had to ask my husband to stop by the hospital canteen to pick us up some sandwiches and wraps because I didn't get seen until almost 2:00pm! I wouldn't have been a happy bunny if I had skipped lunch!

I hope everything works out for you with the COC protocol.

Sophie ❤

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Same to you I am quite excited to go and see them. I want to enhance my treatment as much as possible x

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Thank you! I see Dr Mazibuko. He used to work in the NHS before he moved into private practice. I'm the same as you; I want to enhance what I am doing. I'm sure it will work. Just for good measure, I am also seeing Dr Callebout tomorrow. I'm interested to see what he suggests for me.

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Good for you, who is Dr Callebout? I went to see Dr Johnston at the Marsden and Dr Stebbings in Harley street. I want to combine private with nhs basically just to keep an eye on them and make sure my oncologist is giving me what I need. She was not going to give me ibrance until Dr Johnston told her I should have it. Probably down to cost

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Are you sure you're not my long lost twin?! I feel exactly the same about combining NHS with private health care, as I don't think the NHS provides enough of what I need. Dr Callebout is one of the doctors mentioned in Jane McLelland's "How to Starve cancer" book. I just thought if he was instrumental in helping to cure Jane of her metastatic disease then I wanted to see him too.

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I am reading the book now and I haven’t got to him yet 😂😂 I am finding myself getting more and more suspicious of mainstream treatment page by page which is beginning to concern my husband. We should compare notes

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Ah, OK! I won't spoil it for you then. I am suspicious of conventional treatment too in some respects and my GP and oncologist have admitted that certain things aren't available because of money!! I would be happy to compare notes. I have nearly finished the book.

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Me too! I noticed they are having me see my oncologist twice a month now. Chemo once a week, and yes doctor appointment Takes two hrs. Chemo takes four hrs. I cancelled doctor this week. I have chemo Thursday and doctor again next week. This is crazy. I only go to Newark but you have to pay for parking and , half hour trip each way. I am going to question it this week.

Barbara

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Hi Barbara,

It sounds like you are swamped with appointments too. I hope you can figure things out to where you don't have to go as often, or at least have a couple of appointments on the same day. I managed persuade my oncologist to book my next appointment with her the same day that I am having my next infusion. It's in the same department! It just makes more sense to walk out of the day unit after my treatment, back into the waiting room at reception as I await my appointment with my oncologist. It also means less juggling with my work.

That's a pain about paying for parking. British hospitals (but not all) also charge for parking.

Sophie ❤

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Hi Sophie,

When I mention multiple appointments they say, oh that was a mistake etc. I think once a month for oncologist weekly chemo is enough.

I thought I had a UTI, took antibiotics had three urine cultures, 2 urinalysis all negative. Told to see urologist. This is five weeks of being uncomfortable some blood. Cannot get urologist appointment until July . Called three urologist s in my town. It is like no one cares. Even gave some history and they say sorry no openings.

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Hi Barbara,

Multiple appointments are taxing. It's the time to get there, planning, not to mention the emotional and physical drain of regular visits to the hospital. So I can certainly sympathise. I am self-employed, so can fit most things around my work, but it's still a bit of a pain at times.

I'm sorry to hear about the possible UTI. Are there any other urologists nearby that you can contact? Five weeks is a long time to suffer. Can you take an over the counter cream in the meantime that can help? Or does an actual diagnosis of a UTI have to be made first? I've not had one before, so don't know the best way of proceeding. I just hope you get some relief soon.

Sophie ❤

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I also have my bloods done the same day as my oncologist appointment then I can have my denosumab injections and my new supply of Ibrance...only drawback is I have to hang around for a few hours while bloods are done.,,if it’s a nice day I can go for a walk in the woods nearby...and I always have s book in my bag so never bored

Barb XX

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I guess I’m lucky with the oncologist I go to here in Oregon. I arrive and they draw my bloods usually within the first 5 minutes of getting there. If they are on time I get seen by either the oncologist or the nurse practitioner (they alternate)within 15 minutes and the blood work is on their computer. If I have an infusion they send me back for that right after the oncologist. If all goes right, I’m out of there in 2 hours, no charge for parking. If things are running slow then the most I’ve had to wait is 45 minutes to an hour to see the oncologist. But since he never hurries me, even when he is late, I really don’t mind. I know someone really needs his attention that day! Elaine

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Hi Barbara

I see my oncologist once every 3 months after the scans and my GP when I need to like before so I have blood tests and infusion once every month a few days apart. This leaves the rest of the month free from visits and keeps me sane for now. Nothing like a hospital to make you feel ill. Is there any way you can get them closer together giving you a bigger gap in between sessions?

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That is what I will do this week. I can't even plan a vacation.

Barbara

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My oncologist said she normally sees people monthly but I didn’t see the point unless there is a scan to discuss and she agreed with me. If things change I’ll increase the visits .

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Sorry to butt in, but you said your oncologist likes to see patients monthly? I see mine once every three months and that's just to get my CT scan results.

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She said I could see her monthly as others do but I only wanted an appointment at scan results

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Do you have regular mri’s

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That's how I feel too. I don't see the point of monthly appointments. I haven't had any MRI scans in over a year.

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Hi Sophie. Wonderful scan results and I am so happy for you. Your oncologist seems accommodating with the COC protocol. Honestly I don't think any would actually recommend, mine included but I do know she would support me if I chose to do so. This isn't something I'm considering anyway at this point. Personally I worry about the extra taxing of the liver taking all these extra off label medications, supplements etc in addition to the targeted therapies we already take which can take a toll. I guess I want my liver as healthy as it can be if/when I eventually think about the chemo route. That's just me though and the nurse in me I think.

I also see my oncologist monthly. She has basically taken over all my care including my blood pressure meds etc. I honestly don't see any point of going to my GP for things my oncologist can handle. I was never a person to traipse to the doctor anyway. My oncologist feels that waiting 3 months in between appointments is too long as she likes to physically put an eye on me to better gauge how I am actually feeling. That's just her way with me....I've never asked her how often she sees her other folks. Hope you are able to rest up before your other appointment this week. Take care.

Sandra

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Hi Sandra,

Thank you for the good wishes! I'm pleased things are still looking stable.

I can see where you are coming from with regard to the liver. I don't want to overburden my liver either. My ALT levels were slightly elevated about three months or so after I started treatment and then they went back to normal again and have been within normal range since last year.

I see my GP each month for my zoladex injections and I feel more at ease seeing her regularly than my oncologist. My GP never seems in a rush for me to leave, she listens and is sympathetic. It's good that you like seeing your oncologist every month. It just wouldn't be for me.

Sophie ❤

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I have the same thoughts about COC therapies. I do have phone consultation with them end of the month just to hear what they advise.

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As a nurse you would. I researched the pharmacology on all the drugs that seems to be used with everyone and that's what I'm basing my current decision on. Also I have severe allergies to most antibiotics and I know one is included in the protocol. However that's my decision alone and I certainly don't want to sway anyone. Will be curious for you to post about how your consultation goes. Good luck.

Sandra

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Glad you got good news Sophie. I like your Question Authority attitude, sorry it’s tiring you out though.

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Hi Laura,

Thank you. I had three pages of notes and questions.

Sophie ❤

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Hi Sophie, well done on good results. I do admire your energy and drive and am thinking of you. Life becomes non stop appointments, tests etc doesn't it? We are escaping to the Netherlands today for 4 days. I hope they don't ask me to remove my wig as I look very different from my passport picture with or without the wig! God! I hate all this Fayx

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Hi Fay,

Thank you! I'll be glad when this month is over. It has been very, very busy, not just with my own appointments and treatments, but other personal issues I have been dealing with too. Have fun in the Netherlands. It's lovely over there.

Sophie ❤

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Great news! I'm pre-menopausal and on ibrance and letrozole, can't believe I'm the only one. I get an implant every month (Goserelin I think) to shut down ovaries. Surely you'd be able to push for ibrance if you needed somewhere down the line. I'm hoping to follow you to the COC too - just need to pick up my scan and blood results on Wednesday. Anyway, enjoy the ⛅! X

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Hi Golly,

Thank you! I get the monthly zoladex (goserelen) implant too in order to shut down my ovaries. My oncologist asked how I was getting on with that and if I wanted an oophorectomy instead, but I'm not ready to lose my ovaries. I will push for ibrance down the line if I need it.

I wish you well with the COC protocol.

Sophie ❤

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Hi Sophie,

Glad you continue being stable! Regarding Ibrance, I think they do not offer it if the mets are not too extensive. As you say your mets are very small and they probably think you will do very well with Letrozole alone. They could always add it if there is any progression, so you still have that option. I was pre-menopausal when I started Ibrance, so you do not need to be postmenopausal to have it, but I had extensive bone mets (I even have to had a total hip replacement op!) so did not have the option to just start with Letrozole.

I hope you are doing ok with COC. Was your primary shrinking with Letrozole alone or do you think the COC drugs are helping?

Let us know how you get on with Dr Callebout, I am thinking of making an appointment with him too.

All the best 💕

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Hi Eva,

That's reassuring to hear that, thank you! I remember when I saw the metastases on the screen this time last year. They just looked like a few dark spots, rather than masses (apart from the breast, which was bigger). My oncologist said she hopes to keep me on letrozole for many years to come and that I am doing well on it.

My primary tumour was shrinking before I started the COC protocol, and my understanding is that it will continue to shrink as time goes on and the stem cells (hopefully!) start to die off. My oncologist couldn't say if the two spots on my spine are shrinking or not, as they are so small.

I will add a post after I have seen Dr Callebout. I'm looking forward to hearing what he has to say.

Sophie ❤

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I am so happy that you are having good results ❤️. Ibrance is crazy expensive but with health coverage I am able to afford it. I am post menopause and it was my first line of treatment. It’s good you ask questions and you are getting good results without it.

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Thank you! Maybe ibrance will be added at some point. I'm glad your insurance covers it.

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That’s fantastic Sophie,

I would love to be on Letrozole alone. The fatique and other side effects are so draining. I felt pretty normal with only L. I wish you many more years on it xo

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Thank you!

Sorry to hear that your side effects are hard to handle though. Hopefully they will improve.

Sophie ❤

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Don't you love how venting on here works so much better than punching a pillow for 20 minutes. Besides, when I punched the pillow it exploded and feathers went flying everywhere. I didn't know I still had a pillow that old. :-)

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Yes, venting is wonderful! That's funny about your pillow! 😂😂

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Wish I could have seen that!!...I’m not trying to trivialise your anger ..it’s just that vision of you covered in feathers and very cross!

Barb XX

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You just made my day with that mental picture! I’m sure it wasn’t funny at the time, but....

Elaine

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I have now got to the bit about Dr Callebout and I’m excited for you. Let me know how you get on. It’s good to know who is worth seeing. I had a ridiculous experience with a dietician in Harley street x

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I will let you know how I get on with Dr Callebout tomorrow! I wish I had finished Jane's book before tomorrow's appointment, but I have had a ridiculously busy time this month, especially the last 10 days while my dad and brother have been staying over. Every time I try to pick the book up to read and study it, I am called away or am distracted.

I'm sorry to hear about your negative experience with the dietitian. I have seen two since my diagnosis, one last September and an oncology dietitian more recently. The first one was nice, but she offered more general advice. The one I saw recently said I have a very good diet and actually encouraged me to have treats! She just said to lay off the fermented foods and drink if I ever need chemotherapy. I even read a Royal Marsden cookery book in the hope of getting some more solid dietary advice, but it was more about what to eat if you are going through chemotherapy, need to gain weight, have lost your appetite, how to whip up something quickly when dealing with fatigue and so on. It wasn't really what I was looking for. What happened with the person you saw in Harley Street?

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It’s a long story I’ll tell you later she was also an oncology dietician , I did get a refund so all is well

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Well besides all the waiting that is good news about your scan. Sophie the first time my cancer spread was to the bone and I was only on faslodex for 11 years which kept it at bay. Maybe you won't need the ibrance. I hope things continue going well for you. Makes me happy to hear good news!! Hang in there - 1 more appt to go!!

Kim

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Hi Kim,

Thank you! I have had all my appointments for the month, so can breathe again! I got home from London a short time ago. It was a great appointment.

Sophie

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Stable and shrunken tumors are great news ;)

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Thank you, Mary. I am very goal-driven!

Sophie

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Sophie,

Congratulations on your results and well wishes with the COC protocol.

It is exhausting with so many appts.

Good luck with your Wednesday appt. And then try to rest and relax.

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Hi Marianne,

Thank you! Everything went well with my appointment today. I might post about it tomorrow. I am just so tired now.

Sophie

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Hi Sophie! So happy to read your post and hear about your fantastic news!! Wishing you many more like it! Xoxo

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Hi Leeann,

Thank you! I wish you all the best too.

Sophie x

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Sophie

Am so happy for your good news💕may it continue for a very long time. Good luck with the appt today. You are in my thoughts and prayers😘

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Hi Frances,

Thank you! That is my hope for me and all of us too. My appointment went well. I am just so tired. I got back from London and I just want to soak in a nice hot bath.

Sophie

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I have read about him, does he think he can get you in to a lasting remission? What is his protocol?

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I am hoping so!

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Did you have to Wait long for an appointment? Please let me know how it goes. I’m looking for a holistic doctor. Funny I looked him up yesterday. What made you choose him? I’ve started THC & CBD. Ginger and I’ve ordered some nutritional stuff. My mind is finally coming back after the shock of breaking my neck etc. It has taken 6 months! The CBD helps calm me down.

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I've just posted about how things went with Dr Callebout. I was able to make an appointment easily.

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Hi Sophie,

Okay this is a three day weekend for us. Memorial Day - banks are closed on Monday. I guess you know that as your husband is American. Do you have a long weekend? If so hope its a good one. I am at my son's helping him and my daughter in law navigate new parenthood. Actually, I cleaned the kitchen, took out trash and am doing endless loads of laundry. :) Happy to help them and then I get to love on my baby grandson.

Kim

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Hi Kim,

Yes, same here. This three-day May Bank Holiday coincides with Memorial Day. I'll be car booting (there are two in my brother's village) and then at lunchtime I'm meeting a group of friends for a picnic and walk around some local lakes.

It sounds like you are having fun with your family. I bet they really appreciate all your help.

Sophie ❤

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