Checkups - when, what type etc…
Checkups - when, what type etc… Can anybody help me please. I am halfway through one year of Herceptin, after having WLE, 3FEC 3Taxotere, 26 Rads. I have had my first annual mammogram since the one that the diagnosis was made from which seemed fine.
What can I expect in the way of checks from now on and how often. I feel so abandoned. Sounds overley dramatic I know, but that is the way I feel. I think if I had some sort of structure for the next few years laid out before me I would feel more in control, but at the moment I just don’t know what my next move is. I never see my oncologist anymore - at least when I was having chemo I got to see her and talk to somebody. But now I feel there is nobody. I live in France and things are very different I think here in terms of moral support - basically they don’t think you need it.Maybe I am just weak. Sorry, having a bad day/week/month!! Many thanks.
Jane
Hi Jane firstly, dont say your weak - your not; your just having a bad day/week/month. ;o)
i can fully understand why you feel left out on a limb. i was the very same two yrs ago, i made my appointments myself (simply by getting in touch with the BCN’s) b coz i felt ‘forgotten about’
at present i have had another mastecomy - so no more mammograms then - and am undergoing chemo, but i do still wonder what will happen to me. where do i go after all this? will i have regular call outs for check ups?
i have read many threads on the same line as yours in ‘under going treatment’ and the ladies have said, maybe its because of all the appointments etc you have had someone there to talk to - if u know wot i mean - i suggest that u contact your Breast Clinic and ask what kind of follow ups you will get.
at my hospital its check ups (ie ultrasounds and 'gropes) for 3 months after yr op then 3 mnths after that. then 6 mnths then 1 yr after that. then 2 yrs until your ‘5yr clearance’ is given. !!!
i am sorry that i cant give u any more than that - im probably not the right one to ask really but i felt u just needed to know that someone ‘heard you’
if no one does respond try going to ‘undergong treatment’ im sure there are threads on there
take care Jane loadsa luv adele xxxxx
ps heres a hug for you (((((((HUG))))))) xxxxxxxxxxxxxxxxxxx
thank you thank you so much for responding, it really does help knowing somebody is there that understands, Your words meant alot!
Kind regards and I hope all goes well for you.
Jane
Helpful post Hi Jane, sorry you aren’t feeling so good.
A very helpful post on how you feel when treatment ends is under ‘Feels like I’m going mad’, bottom of p1, posted by Karina under the heading ‘You’re not alone’. She has pasted in a paper by Dr Peter Harvey called After the Treatment Finsihes - Then What?
I am not nearly at that stage but have printed it out for future reference. I can identify with what he says even though I am only halfway through chemo. It is well worth reading.
There is a reference to it in another thread but I can’t remember where that is.
Hope this helps.
Meg
post-treatment Everyone feels at a loss immediately after completion of treatment - you are not alone and definitely not weak. After all there have been several months of intensive care and contact which suddenly cease. Usually here there will be a 6-monthly check up for 5 years. If there’s no evidence of disease development within that time frame, then you would be discharged as clear. The information below shows that the French system is longer and more intensive.
Incidentally, have you come across this French site? If you haven’t, they have a forum which might be able to help:
I also found this on another French site:
SURVEILLANCE APRES TRAITEMENT
Les patientes traitées pour un cancer du sein font l’objet d’une surveillance régulière, en principe sur une période de 20 ans.
En ce qui concerne le rythme de cette surveillance, d’une manière générale il est admis qu’il doit être effectué selon le schéma suivant, modulé en fonction des éléments qui permettent de saisir une éventuelle gravité pronostique, àsavoir un examen tous les 4 mois pendant 2 ou 5 ans, puis 2 examens annuels de 5 à10 ans postÂÂthérapeutiques, et enfin un examen annuel jusqu’àla 20e année.
Les contrôles comportent un examen clinique lors de chaque consultation; la réalisation d’une radiographie thoracique une fois par an àla recherche d’une éventuelle métastase pulmonaire, des mammographies tous les 2 ans; une échographie hépatique annuelle dans les cas considérés comme àhaut risque sur le plan pronostique; et enfin des prélèvements sanguins réguliers pour surveillance de la formule sanguine et dosage des marqueurs tumoraux, en particulier l’A.C.E. (antigène carcino ÂÂembryonnaire) et le C.A. 15.3.
Cette surveillance a également pour but d’évaluer l’existence d’éventuelles séquelles thérapeutiques et d’y apporter la réponse adaptée. Parmi celle-ci, il faut citer le IymphÃ…“dème du membre supérieur (gros bras) du côté traité dont la fréquence dépend de la nature du traitement initial.
En effet, le lymphÃ…“dème est rare après traitement par irradiation exclusive; il est un peu plus fréquent en cas d’intervention sur l’aisselle ayant retiré les chaînes ganglionnaires; il devient significativement plus fréquent (de l’ordre de 22 à24 %) lorsqu’il y a eu association d’une intervention chirurgicale et d’une radiothérapie au niveau du creux axillaire.
C’est d’ailleurs une des raisons pour lesquelles l’irradiation du creux axillaire qui était auparavant quasiment systématique dès qu’existait une atteinte ganglionnaire, même de faible importance, est abandonnée actuellement lorsque l’exérèse des chaînes ganglionnaires de l’aisselle a été réalisée par un chirurgien expérimenté.
L’irradiation axillaire n’est maintenue que si l’atteinte ganglionnaire était massive et comportait notamment des effractions de la capsule des ganglions avec dissémination dans la graisse périphérique, ceci faisant craindre la possibilité d’une récidive au niveau de l’aisselle.
Enfin il ne faut pas oublier un élément fondamental représenté par la réinsertion des patientes atteintes d’un cancer du sein, car celle-ci ne se fait pas sans un certain nombre de difficultés.
Les séquelles thérapeutiques ont des conséquences psychologiques et sociales, aussi bien dans le couple que dans le reste de l’environnement humain et touchent chaque patiente àdes degrés divers et àdes moments variables de l’évolution de sa maladie.
Un soutien psychologique peut être apporté, dans toute la mesure du possible, et peut aider les patientes àsurmonter cette épreuve en leur apportant la démonstration qu’il est possible de vivre ànouveau comme avant. Ce soutien peut être obtenu par la rencontre avec d’anciennes malades qui ont réussi àsurmonter la plupart de leurs difficultés.
{I do love looking at other countries’ information - can be very illuminating.}
Honestly, the best thing is to start looking forward to planning your own plans. You still have this forum to give you support and the BCC support system if you want to talk to a voice.
Best wishes!
Check ups Thought I’d let you know what check ups I have so you can compare.
For the 1st 2 years I am seeing someone every 3 months (the breast consultant and the oncologist alternate). I have a mammogram once a year. After 2 years (next Jan!!) I will have 6 monthly check ups. My breast care nurse is available any time for a chat or queries.
Hope this helps
fantan
Hi,
I finished treatment just over 1 year ago. I had a check up and mammogram last February and a check up last month. I’m due a check up and mammogram next February and i’ve a sneaky suspicion i’ll then be on annual checks. I find it very scary as i’m at a pretty high risk of recurrence. In this area they seem to wait for symptoms to appear.
Kelley
check up i finished my chemo in may my rads in june and i’m seeing my oncologist every 3 months at the moment,
well i should be but he wants to give me herceptin so i’m seeing him more regular at the moment.
i was dx 12 months ago on 7th october, so saturday just gone wasnt a good day to be honest.
i had my 1st ever mamogram then so when will i be sent for, for my next one ? [at least i’ve only got 1 boob to do this time]
kim x
Check ups …or not… Hi Jane,
I felt much like you when I was “discharged” by my Onc after finishing 26 rads (2 surgeries and 6 x FEc chemo). I too wondered, who is going to check me out in the future? Turned out it would be my bc surgeon - fine, he is great, but I don’t need further surgery! I got Mondor’s disease in the bc breast and it took many months to sort it out, basically because he had a stroke and I had to see other useless surgeons who told me it was due to radiotherapy, who were entirely wrong.
I am seen once a year in the breast care clinic and they will only give me a 2 yrly mammo. I have questioned this many times, and both the Oncs and surgeons say that mammos/radiation can cause breast cancer! What a catch 22 - why, indeed do we then have them to diagnose bc? I have never had an answer.
Like you, I would feel much better if I saw an Onc, even occasionally to check breast tumour markers, but they don’t do this in England unless you have symptomatic problems. To be fair, they did do a bone scan when I had problems in my hips, when I was worried about bone mets, but it turned out I had arthritis. They certainly don’t do blood tests for cancer markers, and I am cross about this.
I got privately tested for HER2, but I was negative, so guess I am off the radar for them now. I am not at all happy about my follow up - my friends in the USA have yearly mammos and they don’t even have breast cancer. I really don’t know where we go from here, but I did talk to my GP last year and asked if I could have a yearly mammo privately and he said yes - my tumour was not palpable, even by my GP.and had spread to my lymph nodes, so I am very concerned about a recurrence.
Good luck, and take care.
Liz.
variation in check ups? I had surgery (WLE/ANC) in March followed by rads which finished in July. Last month I saw the onc for my post-rads check and also a separate appointment for a check up with the surgeon, which was six months from the op. I will be seen every six months, alternately by the onc and at the breast clinic, I will have a mammogram next February followed by annual mammograms for the next five years, and I have a fantastic BC nurse who has told me to contact her at any time in the future if I have any concerns.
Considering my good prognosis (small lump, low grade,no spread) I am surprised that I seem to be having more regular check ups than some of you who have had more treatment and wonder why there seems to be such a variation in how we are cared for afterwards?
Best wishes,
Nicky x