Lumpectomy Lounge....let's talk!
Comments
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Way to go Sandymomto3.
The Oncotype test is one of the few tests you want to get as low a grade on as possible! :-)
Well done. Tell your genes, well done from all of us.
Isn't it amazing how doctors seem to not answer questions? I always think I am crazy when I leave the doctor's office no wiser than when I went in.
Maybe they are taught special classes at Med School - like "How to avoid giving patients answers 101".
Apologies to any doctors out there who may be reading this - we know you work hard and do your best.0 -
my genetic testing came back negative yiipppiii so lumpectomy it is
I must have lucked out on my doctors they are great at answering questions and very open minded!! Also personally calls me on questions I call in and updates and test!!!0 -
Yay, Annika! So happy for you! That was the final deciding factor for me when determining LX vs. MX. If I'd come back BRCA positive, I was prepared for BMX, but with a negative result, I went with the BLX instead. So glad you have good, understanding docs. That makes all the difference in calming "some" of our fears!0 -
Hello Ladies
I saw the RO today and have my simulation and tats on Monday - probably starting rads about a week and a half after that. 25 treatments with the boosts added to the last treatments if my hard patch (hematoma) has cleared up - otherwise will have boosts separately after the 25.
I also saw my MO and got the Oncotype Dx test score back - 21. I am in the intermediate zone and MO says there is no reason to do chemo - she says it won't change the probability of a return whether I have the chemo or not.
I was disappointed not to get a low score. Also surprised that the MO gave me a script for Tamoxifen and told me I had time to start before rads and should do so. Originally she said I would start after rads. I don't know if it was just a random decision on her part or connected to the Oncotype score. Did anyone else not doing chemo start Tamoxifen before rads?
I will be buying my bottle tomorrow and starting tomorrow night.
I haven't seen too many people here with an Oncotype score of 21 (or in the intermediate zone) who weren't doing chemo. Many of you seem to have been given the choice to do chemo or not but my MO didn't seem to think there was any need (also taking into account my ER+/PR+ and low Ki 6-9%).
Any thoughts? USA doctors seem more likely to give women the choice to do Mastectomy or Lumpectomy and to do chemo or not. I would have thought these are ideas that should be decided medically not by what seems better to the individual (who is shocked, distressed, and basically knows very little about BC).
So I am curious what you lumpies have to add - meanwhile I am not fighting to do chemo if the MO thinks its not needed. (The RO didn't seem to think it was needed either. He didn't offer an opinion on it at all.)
I am putting on my big girl panties now and going for a healthy walk instead of stressing.
Hugs to all.0 -
Hi Bounce -- sorry you got a score in the intermediate range for your Oncotype -- when I was waiting for my score to come back, I was thinking about what I would do if it came back in that range, and I thought I might go for a second opinion or ask whether the med onc would present my case to the tumour board. .....................................................................................................................................
PS -- I also have a bottle of tamoxifen sitting on my counter. Haven't taken any yet, as my next step is more surgery and I need to understand that timing first. I thought I would get it and try to make friends with it before starting to take it:)
........................................................................................Good for you for going out for a walk!
Ridley (who no longer seems to be able to post with paragraphs.....)0 -
Bounce, I had a 21 on my oncotype. I had grade 3 which is more aggressive and micromets in 1/3 nodes. My oncologist knew I had been researching before he gave me the score. The tumor was small, only 1 cm with clear margins following the LX. I told him, "We have to do chemo" although number wise from the oncotype lab it show minimal benefit. The micromets and grade 3 were what concerned me.....concern not that it would recur but that it would spread. My onc explained that the chemo searches out the "different" fast growing cells and attacks them so that there would be more benefit for example to a grade 3 than a grade 1 because the cells are more "different". He definitely waited for my reaction after showing me the score and as much as I did not want to do chemo, I chose to and he agreed for my personal case. I have no regrets although chemo was very hard and tiring. I used Penguin Cold Caps so I survived 4 infusions and kept most of my hair.0 -
HI Bounce.
I also stressed a bit about the fact that my Onco score in the middle zone. My Oncho score is 18 and I was also told there was nobenifit to me to have chemo- it was not even offered to me. He basically said no chemo- looked at my breast after rads and handed me a script for Tamixofen. I was kind of in shock. Just have to trust that the MO knows what they are doing. actually had a family member lecturing me on the fact I was not having it. Not sure when she became a doctor, but that is another story.
Did you get to see your oncho paperwork? It explains more on there. I asked for a copy when I was back at the clinic the next time as the time he told me no chemo I was in shock and didn't think to ask.
Hugs Bounce
Annika CONGRATS!! I like how they did things with you better than with me. I always questioned why I was not offered the Brac test before surgery as why do it twice if I turned out positive. Monday I got the final paperwork on my Braca test. Two weeks ago when the results were back I begged them to let me know the results as waiting til yesterday would have killed me..
I am sorry if I am missing anyone in this post, but for some reason I am not able to scroll up.0 -
Hi, all. Tomorrow I have my first MO appt and get the results of my oncotype dx test. What should I expect at this appointment? I've heard others on these boards say that I should expect some kind of examination, blood pressure, temp, etc. Is that standard and if this doesn't happen, should I request it? What kinds of questions should I ask? I have seen some people say that their MO prescribed tamoxifen at the outset of their radiation. Others said their MOs want them to wait until they're finished with radiation before taking the tamoxifen. What is the risk? If I find out I don't need chemo at tomorrow's appt, I expect to begin radiation on both breasts in November. Thank you for your suggestions.0 -
Hi Summergal
My MO phoned on Sunday (regular work day this neck of the woods!) to say she had the results and they were low so need to do anything except carry on with RO. I asked what the actual score was expecting to hear about an 8 and she said 21.
To make a long story short I made an appointment to discuss the results on Tuesday and she was very brief and said there was no point in me doing chemo as I had ER+\PR+ positive receptors that would do well with Tamoxifen and a slow growing type of cancer which would not be affected much by chemo. No discusion. No ifs or buts!
Then she heard I would only be starting rads in 2 weeks time and wrote a script for Tamoxifen and told me to start taking it.
I told her I hadn't prepared my list of questions about Tamoxifen yet! She said she would prefer it if at this stage (had lumpectomy on 1st of September) I was doing either rads or Tamoxifen - so she suggested 2 weeks was enough time to see if I was doing OK with it and that I could wait till after rads to take it but she thought I should start now.
I figure MO knows whats best so put on my big girl panties (after a panic post here which helped me get calmer) went for a walk and bought the T and even took my first one last night.
I am glad the MO started me on T unexpectedly as I didn't have time to stress out about it. And I actualy feel good that I am protecting my other boob.
My MO speaks too fast I can hardly understand a thing she says. It doesn't seem to settle into my memory.
Next conversation with her I am going to ask her to slow down a bit. I have to remember she is human and that I can stop her when I need to think!
Does anyone know how long Tamoxifen takes to start working? Does it have to build up or is one dose a treatment dose for 24 hours?
How long before I notice hot flushes or falling out hair?
Sorry, I seem to have gone off topic.
I found this link which seems to suggest there is no right answer.
http://www.breastcancer.org/treatment/radiation/ask_expert/question_24
I just wanted to let you know we are thinking of you, hoping and praying for the best and waiting to hear from you.
Hugs.0 -
I too had an intermediate score on my oncotype a 22. My oncologist had said from the start (just looking at the pathology report) that he thought I would come back low or low intermediate - (which I did) and that with the other stats he wouldn't recommend chemo for me. I also researched lots of oncotype sites that showed the benefits for a low intermediate score and they all show minimal benefits.
I know everyone is different with different stats - but my RO confirmed that as well - Of course no promises - but then the risks that come with chemo still offer no promises. Guess we'll just have to wait and see. Interesting ride for sure0 -
HI All,
I started on Tamoxifen on Sept 27th. I didnt put my big girl panties on for 11 days as I was too scared to start it and had had it since Sept 16th. I started to notice a few things the first couple weeks. I read about and was told about flash effects. My nurse coordinator told me to expect more side effects the first couple weeks. I am not sure why.. I did start having quite a few hot flashes after a few days, and trouble sleeping which is a pain. But now the hot flashes are not as often it seems. I also found out I have to take tamoxifen and then go to bed right away. If I take it and stay up at all I can not sleep at all . I have been able to sleep about 6 hours straight with only waking up once or twice with hot flashes. I know everyone is different and I see my Onc Nurse Practioner on Oct 25th.
I see Benedryl can not be taken when a person is on Tamoxifen. I wonder what it does if you take it at the same time- I have food alergies to seafood and once in awhile have to take bendedryl because of something being cooked with seafood etc at a cafe..
Anyone else heard anything about benedryl?0 -
I have a question for the group.
Do any of you notice that you can feel a hard spot where the cancer was removed? The surgeon told me fluid would fill in the cavity where the cancer had been removed so that I would not have an indented breast. I noticed that under the incision I can feel a very hard spot that is about 2 by 4 inches? It is painful if I press on it or sleep on it. I am worried about a seroma . I do see the Oncologist Nurse Practioner on the 25th of this month to discuss the SE of tamo, I probably could ask her then too.
The PT gal said it was not scar tissue and that she felt maybe it was from my internal rads. I did hear rads can make a breast hard.
Thanks0 -
Hi there Ndgrrl
I asked my surgeon about my hard spot a while ago and she said it was fine and would eventually soften up. She didn't offer any other explanation and was in a big rush so I didn't push further.
This week my RO examined me and said because of the large hematoma they might have to add the boosts on at the end of my treatments intead of doing them with the usual treatments.
So that seems to be my hard spot explained - a hematoma.
I asked the RO if there was anything that I could do to help it resolve - like cream or massage and he said - no! He is not a talkative man.
I have been rubbing Waleda Arnica Oil into my SNB scar to try keep it soft and now I am rubbing it on my boob too.
I don't know if it will help or kill me (the thought crossed my mind that maybe I should leave whatever old blood is there to get zapped by rads rather than risk moving it around).
I think its little things like this that sometimes drive me crazy. I have a very simple decision to make and I feel like its Life or Death! Like taking Tamoxifen before rads or after. I feel like I am gambling with my life. You have done rads so don't worry about any of that.
Later on I am going for a walk to calm myself down.
To get back to your question - I am 8 and a half weeks post lumpectomy and still have a hard section - the skin on top and around is numb but if a put pressure on it it hurts.
Given all you have been through with going back to work too soon I think it is probably just a question of time for it to heal but like Ruthblu always says - if you aren't sure make an appointment for the doc to check it out.
Shoutout to Ruthblu - exercise really helps - thanks for your encouragement a while ago. I am nowhere near my goal but am knocking of blocks of exercise 15 minutes at a time and getting to enjoy it.0 -
Bounce - can you explain further your feelings about being fearful of taking Tamoxifen before or after rads? I am in the same position and I admit I have not researched enough about either rads or tamoxifen to know why people are afraid. Thanks.0 -
Summergal
Shoot - I lost my post - retyping.
After you raised the issue I checked it out. Some doctors think taking Tamoxifen will cause any cancer cells to become dormant - and less probable that the radiation will kill them.
Once you stop taking T after 5 or 10 years - they will wake up again and grow.
There is no proof either way to show if this is right or wrong.
But radiation does kill quickly dividing cells better than regular cells.
I am trying to send a fax to my RO to ask him what to do as I saw him first and when he asked if I was taking any medication I said no - then I saw the MO who started me on the T and I didn't even think she might be making a mistake!
No one is answerng the phones at the Radiation Center today because the staff has gone away on their anual fun day. I know they deserve it but I feel like swearing. Something a bit stronger than gosh darn too!
Like some wise woman on this site said - Sometimes Life sucks. I prefer it when it doesn't.
I keep thinking I shouldn't worry - one T more or less won't kill me. Or will it?! Insert evil chuckle here for sound effects.
Sending love and calming thoughts to all.0 -
Hi, all,
Had my first MO appt today and received the results of my oncotype tests. I got a score of 7 on my left breast and 14 on my right breast, so no chemo for me! Moving right on to radiation...and my MO said he will start me on Tamoxifen in January when I'm finished with rads. He said the same thing Bounce did above...that the Tamoxifen can cause the cancer cells to "hide" from the radiation, so it's best not to do it concurrently. I asked about the hard spots under my incisions and he said they are scar tissue and might soften over time, but won't ever really go away.
Now I start the process of learning all about radiation! Whoopee! Spent the past four months in a crash course on breast cancer 101...will I get my M.D. at the end of all this? So, to start...what are these boosts I keep hearing everyone mention?0 -
Yay on the low Oncotype scores summer! My RO explained the boosts as being targeted rads at the tumor site. I had my radiation planning on Tuesday, and scheduled for my first treatment next Thursday 10/24! Happy to be moving forward.0 -
I go in for lumpectomy and sentinel biopsy nov 6th. My dr says Ive had this lump since 2009 and its a lazy cancer. Something she has never seen. Anyone heard of this before?0 -
YEA SUMMER- HAPPY HAPPY DANCE!!!
Sandy- good luck on your first rad treatment.
Thanks for the information on the scar tissue. I am not sure what is going on with me as it aches. Rads might be still kicking in - IDK
Adoption- I wonder how the doctor would know how long you have had it? I have not heard of Lazy cancer, unless she is referring to grade 1 cancer? Maybe someone else will know more about this than I...0 -
the Dr compared my films to 2009 films. Dr in 2009 didnt diagnose me at that time. Tumor has not grown since then. Or at least so they say.0 -
its 1.1cm.0 -
Hi Summergal and anyone else freaked out by the starting Tamoxifen before starting rads debate.
My oncology unit does not work on Friday. I was able to get a message to my MO and she sent a message back (pity she couldn't phone me directly but at least she answered via the nurses' station - and BAD BAD RO for not answering my message because he is the one I really want to get confirmation from).
MO said there is no proof Tamoxifen renders radiation less effective and I should carry on taking it.
So I will until Sunday when I intend getting RO's opinion and then I will have to decide what to do.
If I can stop it during rads and then resume after I would prefer that - but I first need to find out how long the dose lasts for and how long it takes to leave your system completely.
I am thinking a call to the drug manufacturer (in my case Teva) might be the way to go to get some real info.
Also - I have learned a lesson early on and will get my MO's and RO's mobile numbers or e-mail addresses for future emergency (or important) questions out of office hours.
The nurse only agreed to try and contact a doctor for me after first refusing to do so and telling me to wait until after the weekend when I told her I have cancer not a head cold and I don't want to worry myself to death for 2 days! Then I cried. Thats when she got helpful.
I guess I will be spending quite some time this weekend trying to google reliable information. I am learning that anything from two or more years ago is probably out of date and some new study proves something different.
Also - I wish I understood statistics better.
MO says the cancer has a 10 to 12% chance of recurring (which Tamoxifen will cut in half).
RO says without radiation cancer has a 30% chance of returning to the same breast (Radiation cutting the risk to 8% - so maybe that is the figure the MO is referrng to)
And I have seen info posted else saying between 20% to 30% of patients with early stage breast cancer develop metastatic breast cancer!
WTF!!!!! My MO just smiled and told me the 5 year survival rate is 95-98% she didn't say anything about 30% later on down the line.
Again I feel like I got thrown in the ocean and better learn to start surfing!
Am off to rub lashings of Arnica oil on my lymph node incision and boob! It is so calming.
Am also counting on medical science to come up with some new treatment options.0 -
Bounce. Did you get the papework that comes along with the Oncho DX test. There are grafts on it etc...
It gives a reaccurance score on there. Then it gives you a reaccurance scrore for if you take Tamixifen, then it will also give you another score with chemo etc..
That is probably where the MO is getting the information on reaccurance... My Onco score was 18. I have a reaccurance score of 12% if I take Tamixifen that lowers to 6% and then if I had did chemo it lowered it to 3 % but with the chemo the MO factored in the sideeffects and said that the benefits did not outweigh the risks of chemo.
IF you do not have a copy of that Oncho score paper you may want to ask the MO office to send it to you. It explains things a bit more on there- Some of it is hard to read and since my MO didnt go over it with me I had to do the research on my own- Some of it is black and white though.
Its awful when you do not know which way to turn. I described it as being in the driveway of a busy street and someone was gonna take the brake off or my car and I was going to be thrown out into traffice not knowing exactly where I was going and afraid to be ran over by traffic!
It won't hurt you to stop taking the Tamoxifen and starting back up after rads? I know my neice and cousin didn't do tamo until after they were done with rads. An example is my neice was dianosed in May and starts Rads shortly and still is not on Tamixofen.
Keep your chin up and try to keep yourself busy, that is all you really can do..0 -
Hi ndgrrl
Thanks for the calming down.
My copy of the Oncotype is a copy not an original printout and some of the writing is not legible!
Also my MO did not explain it the way you have - she said the Oncotype score presumes you will be using Tamoxifen and doing radiation.
Mainly I was upset about the 20-30% statistic I read about mets because that is prediction without time limit whereas all other stats given are for 5 or 10 years. I thought Oncotype was a 10 year prediction.
I will speak to my RO about Tamoxifen.
I think often doctors do know more than us (even though its hard for us to believe :-) ) and I think there may have been something specific about my case that led the MO to start me on Tamoxifen sooner rather than later.
I see a lot of posts where ladies encourage each other to go with their gut feelings or intuition. Someone once said you don't fight cancer with intuition you fight it with hard cold knowledge.
I think a lot of ladies who do choose chemo are not informed of the long-term side effects on their health which go way beyond puking and hair loss. I admire their courage but courage often gets people killed. Because I am not a doctor or specifically not an oncologist I am not equipped to make these decisions rationally. I would think that having a 3 out of 100 chance rather than a 6 out of 100 chance would be worth the risk of chemo but I don't know what long-term damage chemo does. And googling it isn't enough to have an indepth answer. At some point I have to trust my doctors who have all the specifics of my pathalogy report.
Unfortuntely not everything about cancer is exactley known and there are grey areas.
I hate pink and I hate grey!
Today is going to be a bright yellow day for me. I am going to be on the lookout for all things yellow. I intend going for a long walk and looking for yellow flowers.
Will carry on taking Tamoxifen and will try speak to MO and RO this week when I go for my simulation as well as getting an original printout of the Oncotype Score.
And now to add fuel to the fire ........ Ladies, has any of you heard of a test avalaible to see if you metabolize Tamoxifen well or not? I heard there was a way to check if Tamoxifen would be effective or not. Turns out some people don't metabolize it well and it is less effective for them.0 -
HI Bounce.,
I made a typo- with an Oncho score of 18 I have a reaccurance score of 18 and with Tamo- it goes down to 6 percent and with chemo it would go down to 2 to 3 percent its kind of on the line. I did notice that the Oncho is based on 10 yrs.
I know how it is to not get answers and it is so very difficult to trust doctors when its our life we are trusting them with. I like you always wonder did I pick the correct doctor does he know his stuff?
I scared myself some by ending up on sites that were not the best. so I chose to only go to sites such as this one, American Cancer Society and the Mayo Clinic site as well as reading the books the cancer center gave me.
Have fun brightening things up with Yellow I would have a hard time finding that here- though there are lots of gold leaves on the ground and after Sunday lots of white stuff expected to be on the group.0 -
Summergal,
Once again we seem to be Twins. Your oncotype scores are also very similar to mine. Mine were 15 on left and 9 on the right. The higher score corresponded to the larger of the two tumors, as well as also being the micromets side. So, now you are on to rads!
I just finished 23/30 on the right, and started 2/30 on the left side. We also did not treat both sides at same time bec. it might double side effects, so I am just now starting doing both at once, so there are a couple weeks of overlap. Last weekend, (before ever starting the left side) the fatigue was terrible. I felt like a basket case. So tired, and I burst out into tears more times than I could count all last weekend. RO was going to start other side on Monday, but after talking to me, he said, why not wait a few days and think about it. It was totally up to me. I could even wait and do 12 weeks if I wanted, but that is a long time, and it will start stretching into holidays, etc.
Last weekend, I felt like I would never feel good again, and that fatigue and cancer had gotten the best if me, but by Wednesday I felt back to "normal" (whatever that is now), so I felt good about starting left side rads on Thursday. So far so good, except for nipple pain and itching on right side. It hurts too much to even rub anything on, but I need to. I am still waiting for the double whammy of fatigue, but so far it hasn't hit me.
ndgrrl, you and a few others mentioned about having a large hard area in their breast. I too have that in the right breast, a large rectangular area, but it isn't really near the incisions. It has been there since before rads, or maybe I first noticed it the day I started rads, since that is the first day I dared to really touch the area since surgery. I still have large areas of numbness, too. Of course my big fear is that there is another cancerous area that they missed, but then I try to calm myself down by reminding myself that I have had over 4 weeks of rads on that side so far, and wouldn't it kill it? I don't know... So much to worry about.
Bounce, I know what you mean about these confusing oncotype reports. All those percentages to figure out. One thing I also thought was weird on mine, is that the ER/PR percentages are so different from those on my original biopsy reports. For example, both biopsies showed very highly ER positive, with high intensity. On my post surgery pathology report, they are barely there, or are week intensity, or moderate for PR. On the oncotype test, the ER for left side is barely above the threshold for ER positive, it is 6.7, and minimum for ER positive criteria is 6.5. Hope you get the answers you need about the Tamoxifan. I will be starting in December, after rads.
Happy weekend to all!0 -
Hi Summergal and anyone following the Tamoxifen before or after rads question.
I spoke with my RO today (he is head of the department of radiology at the cancer center).
He said that while what I said about the cells being dormant "sounds nice" it has not been proven that giving Tamoxifen before and during radiation makes the treatment any less effective or makes the SE's of radiation any worse. He said I can take T without any worries.
I asked if there were enough studies of decent size to prove this and he said "yes".
I said I would like to stop during rads and I asked how long for the T to clear out my body and he said "a few days".
So that's my info - straight from the horses (RO's) mouth.
L2girl - good luck - what can we say - rest as much as you need and be twice as nice to yourself as you usually are. You have a long treatment. Try keep good nutrition, rest and humour as much as possible.
Best wishes to all.0 -
bounce - I had a test to check how I would metabolize T since my MO found that another pill I am on could effect the T as well. My MO said the test isn't completely accurate, but after this test and all her checking with my other med she decided I needed twice the typical dose and that is what I took until January when I switched to Femera after my Opherectomy and hysterectomy. I also had no major SE while on T even though I was on a double dose. I also started T a couple weeks into rads. My MO did not want me starting at the same time as rads in case there were reactions to either they would know which one was causing the reaction. Let me know if you have any other questions.0 -
Momof3greatkids - thanks for the reply
It is reassuring to know both that you took a double dose and were ok and that you started during rads.
Thanks0 -
Hi all,
I got an automated call from the hospital Saturday that said I needed to get in touch with mammography. I did just that today and they told me I was supposed to have a 6 month follow up on right breast( the breast I had the lumpectomy in) So I got ahold of the breast center and the nurse there rattles off that I had a suspicous looking complicated cyst at 11:00 in my breast that they noticed when they did the biopsy at 12:00. The same breast that cancer was found in( this was just in July)
Now they just want to watch the 11:00 mass. WTH??? is what I am thinking- NO ONE told me about any of this. I mean couldnt they just have biopsied it while I was there if it was suspicious and taken care of it when I had surgery in that same breast- what is this 6 month waiting thing, and then if it is something, does that mean I have to go through all this again?
They did put me through to the doctor who had did my biopsy and she talked to me for quite awhile and I also mentioned to her about the ball of hardness under my incision and she is suspecting I have a seroma. She told me when I see the NP( was able to up that appt to this Wed) and if she thinks that it is also a seroma that they could possibly check out the other mass at the same time if I can get fitted in for an appointment. I am two hours from the facility so I really do hope they can "fit me in"
I really really really thought this was getting better and it was past- but what the heck!!! I just do not understand their reasoning behind waiting 6 months when I was having surgery anyway!
Talk about FREAKING OUT!!! Sigh..:(0
