Have just got the results on my lump in neck (see previous) and absolutely devastated. Seems to have spread not just to neck but other lymph nodes in the fatty area of stomach linked to bowel I think. I am now waiting for a treatment plan, but can’t seem to take it in. Probably wrong to have asked the consultant about how serious this was on a scale of 1 - 10 (he said 5/6 - and I should have a few years). This doen’t seem good to me… Does anyone have any positive stories? Am feeling very low. I still have to tell the children. Also I have just started a new job (teaching) and am wondering if I will be strong enough this time round to work through it. Money is tight and changing jobs means I have lost a lot of accrued sick pay. Would really like to hear from anyone that has had similar secondary spread.
Hello Patricia
I am really sorry to hear your news. I had a lump in my neck and I was also told that I had metases in my lymph glands in stomach, chest, lungs and liver. I found this out last March all on the same day. I was told that the prognosis wsn’t good BUT after having one lot of Chemo last year and having fluid drained from my lungs twice I am feeling really well ( a lot better than I have for a long time) I am only on Armidex and Zoladex now and this seems to be holding my metases at bay.
So there is hope and once they start you on some treatment things will hopefully improve for you
take care CAroline
Hi PatriciaM,
So sorry to hear you have secondary spread to the lymph nodes too.
I was diagnosed with secondary spread to the lymph nodes in the the left axilla in 2002 despite no cancer being found in the left breast. I had cancer in the right breast 3 times but the lymph nodes in the right axilla remained clear and noone could understand why I had the spread to the lymph nodes in the the left axilla. I became known as the lady with the unusual presentation.
Despite the malignant lump in the left axilla remaining undiagnosed for 3 months whilst I waited for an “urgent” appointment and growing from pea size to larger than walnut size, pumping out aggressive grade 3 ER+, HER2+++ cells all the while, I responded well to FEC (yuk) and femara and remain reasonably well 6 years later. I wasn’t even prescribed herceptin as it was not on general release in 2002 and when it started being prescribed, I was beyond the 6 months chemo period.
My 17 year old daughter already knew I had cancer (she was 5 when I had my first diagnosis ) and although I told her about the reoccurence and spread to the opposite lymph, rightly or wrongly, I didn’t tell her about the implications of secondary cancer. Well as it turns out, she got her her A levels, went to university and gradutated this year with a first class honours and touch wood, I am still reasonably well.
Keeping my fingers crossed for you too.
Take care.
Wendy x
Dear Patricia
I’m sorry to hear that your cancer has spread. A new diagnosis is shattering so not surprised you are feeling grim. I had spread to the nodes in my neck and chest wall in April 2007 after primary diagnosis in 2003. I’ve had several chemotherapies since then and still have mutliple nodes in neck, internal mammary and axilla with cancer. I discovered last night that my latest scan showed there may be some tiny nodes in my left para aortic area (which looking it up on the internet I understand is pelvic area.) I’m due to start more chemotherapy shortly.
Anyway I think the coded numbers thing with your oncologist will probably have frightenend you even more, cause who’s to know how or what s/he means by scoring you 5 or 6? What matters is how your cancer responds to treatment so try to find out as much as you possibly can about what your tretament options are…this will depend on whether your cancer is er+and pr+ and her2+ or not. There are quite a lot of different drugs which can be tried and you will now have regular scans to check how well the disease is responding.
Sorry to hear about your new job…sometimes education authrorities and schools have reciprocal agreements about accrued sick pay, though not always. I was lucky when I was diagnosed cause I was in the University scetor and though I had a new job I had accrued full sick pay rights from a previous job.
Depending on how you respond to tretament you may be able to work…some peopel do, some don’t…though I think a school is hard! I think until you have a better picture of your treatment and your disaese (like are the nodes in your abdomen large or small…mine are tiny and so far my oncologist isn’t tkaing much notice of them) then maybe just talk to your children in a low key way. Tell them your cancer has returned but you’re having treatment…anything else can come later.
Most people with secondary spread have it to major organs such as liver; lungs or to bones and then there’s a whole variety of other kinds of spread regionally and systemically which don’t fall into that pattern…its hard to get information about and its hard to find others precisely similar so I know from my own expereince it can feel very lonely.
I think you’ve already ‘met’ dawnhc who had lumps in her neck a while back and is still being treated successully for those and bone mets.
very best wishes
Jane
dear Patricia, I have secondary spread to the lymph nodes too, I was diagnosed primarily in 2005 (triple negative), recurrence in the same breast in 2006, and spread in February this year. Since I have two biopsies of the node that came out negative and a CT scan that was inconclusive, the doctors were very positive about the whole thing, so it was a huge shock for me when the PET scan detected multiple positive nodes in my supraclavicular area. I remember I couldn’t even cry, I just started crying one hour later, when I was in the middle of the street! it is very difficult to take in, and changes the way you see your life forever. there are two things the doctor says that I am holding on to when I go through a dark moment. he said that a lymphatic spread is not a sign of a very aggressive cancer, and he also said he knows some women that responded well to therapy and are in complete remission since then. I know the prognosis is not good, but I hope we can be like those women.
I think since we have this sort of secondary spread, we should keep in contact and compare therapies that are done in different hospitals, it would be good to exchange this type of information.
xxx
sabrina
Thank you so much everyone, especially for the positive comments which I really need at the moment. The whole consultation last night was so depressing and left me feeling that I was now just waiting to die (and I don’t feel ready for that yet). I hope that when I finally get to speak to an oncologist things might be more clear. Didn’t sleep at all last night due to pains in my side, mainly at the back and having to empty my bladder every hour. Have had an upset stomach for a few weeks now and bladder problems which I now feel are related to the secondaries, but waiting now for my breast nurse to get back to me about the treatment. My neck now looks HUGE. They want me to start straight treatment away but as I have moved, I need to find a more local hospital. There is a BUPA just up the road but they don’t do chemotherapy.
Jane, should I ask what grade of cancer was found in the lymph node?
Would really like to keep in contact with you both, Sabrina where are you being treated?, Your oncologist sounds most encouraging, I hope mine will be as up beat.
Pat
Dear Pat
I hope you can find a good local hospital…if possible try to find a centre with a good reputation for cancer but i know eaiser said than done if you don’t happen to live near one. I was originally treated in London but then moved and have limited local choice and am not mad about my oncologist. I recently had a brilliant consultation with a guy at the Royal Marsden in London, and would certaintly recommend getting a second opinion there if you are in any way doubtful or confused about your treatment.
You could ask about your cancer grade but it won’t tell you much as most breast cancers which spread are grade 3, (or 2). The reason I asked about your er, pr and her2 status is that this will make a big difference to the range of treatment options open to you. If you are er+ and pr+ yoyu could have aramotase inhinbitors, if her2+ then herceptin is an option. Whatever there are severla different chemotehrpaies to try. I always get a written copy of my CT scan (not the slides…just the written report)so I cna see excatly what has been siad. That helps me. You need to know whether your gastric problems are cancer related or just coincidental.
When I was diagnosed 16 months ago I was told it was unlikely my cancer would go into complete remission but that it might go into partial remission…so far it has sort of been ‘contained’ though it is bigger right now (though my major organs are still OK). Grade 3 cancers (mine is) don’'t all behave in the same way. As I said before so much depends on how your cancer responds to treatment and you won’t know that until you get onto tretament.
I found that the man at the Marsden was utterly honest, realistic, treated me as an intelligent adult, and left me feeling good and hopeful within the parameters of the possible.
best wishes
Jane
Dear Jane
Thanks again for your support. I am er positive and also herception+ (slightly). Major organs seem to be OK at the moment too. Could you explain please, what is pr+? - I want to try and sound like an intelligent adult when I meet the oncologist, even if at the moment I feel like a very scared and stroppy child.
best wishes to you also
Pat
Dear Patricia, I am treated in Barcelona (I live in Barcelona although I am Italian), in a quite famous hospital with a quite famous group specialised in breast cancer. My oncologist is not an optimistic person in general, but I think he is cautious in giving no hopes. Please let me know what is your treatment plan when you know something about it, my cancer is different (triple negative) but I am interested to know what they offer around the world.
Pr+ means that your tumor expresses the receptor for progesterone, that can be “blocked” like the estrogen receptor with some treatments.
Jane, I talk to an oncologist in Paris during the weekend, she told me that they have very good results with Taxotere+Avastin, for people that already so I would be very interested to know what they told you about avastin in Marsden.
xxx
sabrina
Hi Sabrina
The guy at the Marsden did not recommend avastin for me and I’m happy with his opinion for me.
Jane
sorry Jane, there is one part missing in my comment, I meant “for people that already had epirubicin or taxol”.
sorry for asking about their opinion on avastin, but I am just 42 and I am trying to collect as much information as possible.
Hi there - my secondaries were diagnosed in March (lymph and bones). I am currenty on zometa and avastin. The taxotere (6 doses) has either shrunk or stopped everything from being active. (except some soft tissue mets with my onc. thinks are hormone sensitive - so have now started zoladex and femara). My onc. is “optimistic” though clearly no cure he believs given a fair wind and the right response we should treat this situation as a chronic disease that needs managing.
Gerry
Hi Sabrina
Fine to ask. I am a bit circumspect about writing about avastin because the conversation I had with the guy at the Marsden seems to be somewhat different from ones he’s had with other patients. I keep an eye on trial results and am not personally enthusiatsic about avastin though don’t want to dent others’ hopes. Maybe I heard from the guy at the Marsden what I wanted to hear. But I know that in the US patients lobbying groups were not all happy with the FDA approval of avastin for advanced breast cancer.
Like everyone else I want to live as long as I can and like anyone with triple neg disaese I am s*** scared of my limited treatment options but I’m also philosophical and am just not going to lose sleep over a drug which my PCT wouldn’t fund, that my insurance co,. probably won’t fund, that appears to have marginal benefits on overall survival in breast cancer pateints and that I don’t paricularly want. But everyone is different. If this were a herceptin type drug on rationing then i’d be out there lobbying…but avastin is not the new herceptin.
very best wishes to you…pm me if you want any more info.
best wishes
Jane
Jane
Hi Jane, Sabrina
What I find really odd is that my onc has switched his position on Avastin - I am a bit confused on this - so now I am getting it next week. I dont have unreleastic hopes with it, but I suppose on balance its good to have a shot at it. I know this will probably seem a bit ungrateful to those who have fought for this drug…its very odd, I guess I the conclusion is that oncs are perfectly capable of apparently contradicting themselves - I do this at work myself,
take care
cathy
Hi Pat,
sorry to hear your news this disease is the pits (for want of a better word).
I was dx with secs May 2004 had various chemos currently on avastin due to return to taxol next month or sooner if problems with liver gets out of control.
I am a glass half full type of person which has helped my family as it must be difficult for nearest and dearest if depression is an issue.
We have had many happy times and some sad ones since diagnosis just like life before really!
This forum has been a godsend always someone to help answer questions.
I have outlived several expected expiry dates and hope to continue to do so. The practical stuff gets dealt with when I feel well rather than when I feel ill. It is so much easier writing a letter to a dearly loved one when you think you will still be around to post it!
Love Debsxxx
Hi Katherine
Yes I think oncs do change their minds, contradict themselves etc. Oncology is I think an art as much as a science…there are no sure fire certainties.
I often think of the high dose chemotherapy issue in this regard. In the 1980s and into the 1990s it was common in the USA for women with advanced bc and advanced ovarian cnacer to be treated with high dose chemotherpay, bone marrow tranpslant which was a really horrible procedure involving hospitalisation and remoavl of all white blood cells. (they got whirled round some kind of ‘washing machine’ contraption) It was also used in UK but not so widely (it was one of the tretaments Linda McCartney had). Initial evidence suggested that survival rates were improved but subsequentely found this was not the case so the practice has I think completely stopped. Lots of the women in Musa Meyer’s book on secondary breast acncer (now over 10 years old) had it. I don’t know for sure but I guess there was some controversy in the UK about this kind of chemo not being so widespread as in the US and I guess there was postcode lottery about it too.
Somehow I think everyone with cancer has to find their own way way of living with the uncertianty about treatments, and for myself I draw a line under how far I will go to get the next and the next treatment…I do the best I can like getting my second opinion to hope that the treatment I’m getting is kind of ‘good enough’ knowing that in 10 years time the treatment for breast cancer might be so far moved on that the treatment I’ve got this far will seem completely wrong and out dated.
I hate to think of anyone reading reports of avastin and thinking if they don’t get it that somehow their lives have been compromised…I feel angry and upset when I read some (not all) of the media exploitation of patients around this issue.
And so next week you will start taxol and avastin and I will start taxol alone…and who knows which treatment will be ‘better’ or how long either treatments will ‘work’ for either of us. And niether of us will ever know whether the treatment was right except in the unlikely event that we are both still alive in 20 years to tell the tale… I hope your treatment goes as well as it possibly can as I hope for mine…and I hope we are both still posting for as long as we possibly can,
very best wishes and thoughts
Jane
What can i say jane - agree with everything you say.
take Care.
cathy